I had a letter today from Oxford and I'm struggling to work out if its good or bad news.
My bloods have come back negative, but the Dr only mentions the standard ACHR and MuSK test which I have had done previously and been negative on. They were supposed to be using a more sensitive assay that had been recently developed. So either its been done and is negative or hasn't been done and theres been a mess up in the lab. What is for sure is that I am actually no further on than I was in December 2009 or at any point since October 2008.
The other news is that they want me to stay at Oxford as an inpatient. They would like to re do the Tensilon Test and the Ice pack test. Both of which I have previously responded to. The dr wants to carry these out before doing what he classed a more invasive procedure like PLEX (Plasma Exchange). They also want me to see a neuro-opthamologist again, the same people I saw in October 2008.
I am suspicious and cautious purely because of the way I have been treated previously when I have been an inpatient.
The other news is that Dr Y has sent me a copy of the letter he sent Oxford. This has made me quite angry as it basically says she's asking for referrals all over the place and is there any point?
To put the facts straight, I was sent to Oxford by Dr X in October 2008. I didn't ask for the referral my consultant did. I asked to be referred to London queens square, but declined the referral when Oxford said that they would see me again. I was referred after I asked to see a pulmanologist locally, that referral proved I had de-saturation of oxygen. I then asked to be referred back to Oxford, as Oxford had asked me to be if my condition declined, which everyone had agreed it had. So I am not Dr shopping as Dr Y's letter infers. I am doing what they should be doing which is to try and find out what is wrong with me. Its not difficult the clues are there. Im stable on steroids and I respond to mestinon.
I just struggle to see why this is so hard to diagnose.
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Friday, 29 January 2010
Wednesday, 27 January 2010
shades of grey...................
People with MG can suffer what is know in medical circles as a "Crisis". This is in a very basic level of explanation a term to describe a life threatening inability to breathe. In the most serious cases patients can end up having to be mechanically ventilated. A crisis usually occurs with poorly managed MG, the patient having an infection, stress or heat or it could be caused by some unknown factor.
The problem that MG patients have is that most neurologists have very little understanding of respiratory issues. If you are very lucky as an MG patient you maybe referred to a Pulmanologist. However if the pulmanologist has no understanding of how neuro muscular diseases affect the respiratory system, you can be in trouble!
I was referred to an excellent pulmanologist but his / her speciality was COPD, not neuro muscular disorders. When I was investigated for breathing problems which were backed up by the pulse oximeter that I wore the Pulmanologist had no explanation for why this was happening. The only conclusion he could reach was that I was holding my breath. Luckily my Neurologist and GP were concerned enough to provide me with Oxygen at home to support me when I was having problems. But this is as far as it has got. No further investigations have taken place and no one knows why my oxygen saturation plummets. Or why I can feel very short of breath and it doesn't show on a pulse ox.
With MG relying on a pulse ox can be dangerous. Patients having breathing difficulties can become extremely ill extremely quickly. This can all happen without any drop in oxygen saturation being recorded on a pulse ox. Oxygen saturation can be the last thing to drop as the issue is not with Oxygen but the amount of carbon dioxide that is remaining in the blood. The most reliable way for an MG patient to be analysed is to conduct an Arterial Blood Gas test. However these can be interpretted incorrectly and patients told that they are suffering from panic attacks, when infact they are struggling for breath.
This happened to me in January 2009. I had been struggling to breathe for most of the morning. By 1pm I could barely talk, my chest felt like it was being crushed and I had a real sense of panic. When the ambulance arrived my oxygen saturation was 92%. My venous blood gasses were showing I had a problem. But due to the fact I had no confirmed diagnosis of MG the neurologist on cal told the resus team to ignore all the information they had infront of them as he believed I was suffering from a panic attack. Thankfully my condition improved, but the outcome could have been very different.
Unfortunately in MG there is very little understanding on how or why the respiratory system is involved. For Neurologists on the whole the situation is seen as black and white. The way they see things is that you either have no breathing problems or you are in crisis, there are no shades of grey.
I have now spent a couple of years poking around on different MG forums and the consensous is that quite a few MG patients have issues with their breathing that are not being addressed by their neurologists. The people I have come into contact with around the globe all say the same thing - that their neurologists view the situation as in as long as you aren't in crisis then your breathing is fine.
The concern for me is this simply isn't the case and no one is addressing the issue or possibly even researching it. Surely if enough MG patients are reporting these symptoms to their neurologists this should be investigated. Unfortunately neurology seems to operate in a bubble, where there is only black and white and shades of grey do not exist.
The problem that MG patients have is that most neurologists have very little understanding of respiratory issues. If you are very lucky as an MG patient you maybe referred to a Pulmanologist. However if the pulmanologist has no understanding of how neuro muscular diseases affect the respiratory system, you can be in trouble!
I was referred to an excellent pulmanologist but his / her speciality was COPD, not neuro muscular disorders. When I was investigated for breathing problems which were backed up by the pulse oximeter that I wore the Pulmanologist had no explanation for why this was happening. The only conclusion he could reach was that I was holding my breath. Luckily my Neurologist and GP were concerned enough to provide me with Oxygen at home to support me when I was having problems. But this is as far as it has got. No further investigations have taken place and no one knows why my oxygen saturation plummets. Or why I can feel very short of breath and it doesn't show on a pulse ox.
With MG relying on a pulse ox can be dangerous. Patients having breathing difficulties can become extremely ill extremely quickly. This can all happen without any drop in oxygen saturation being recorded on a pulse ox. Oxygen saturation can be the last thing to drop as the issue is not with Oxygen but the amount of carbon dioxide that is remaining in the blood. The most reliable way for an MG patient to be analysed is to conduct an Arterial Blood Gas test. However these can be interpretted incorrectly and patients told that they are suffering from panic attacks, when infact they are struggling for breath.
This happened to me in January 2009. I had been struggling to breathe for most of the morning. By 1pm I could barely talk, my chest felt like it was being crushed and I had a real sense of panic. When the ambulance arrived my oxygen saturation was 92%. My venous blood gasses were showing I had a problem. But due to the fact I had no confirmed diagnosis of MG the neurologist on cal told the resus team to ignore all the information they had infront of them as he believed I was suffering from a panic attack. Thankfully my condition improved, but the outcome could have been very different.
Unfortunately in MG there is very little understanding on how or why the respiratory system is involved. For Neurologists on the whole the situation is seen as black and white. The way they see things is that you either have no breathing problems or you are in crisis, there are no shades of grey.
I have now spent a couple of years poking around on different MG forums and the consensous is that quite a few MG patients have issues with their breathing that are not being addressed by their neurologists. The people I have come into contact with around the globe all say the same thing - that their neurologists view the situation as in as long as you aren't in crisis then your breathing is fine.
The concern for me is this simply isn't the case and no one is addressing the issue or possibly even researching it. Surely if enough MG patients are reporting these symptoms to their neurologists this should be investigated. Unfortunately neurology seems to operate in a bubble, where there is only black and white and shades of grey do not exist.
Tuesday, 26 January 2010
Lovely Day
Had a really lovely day today, had a visit from E today. Managed to catch up on all the gossip and just generally chat. I ended up on oxygen though as I suddenly couldn't breathe and my face started going south! E's used to it now so she just asked if I was tired. I was tired but as I explained to her if I get in a bad way when I'm having fun I dont care! Its when I wake up crappy I get really annoyed.
We taught E how to play poker today! I have the feeling she could get quite mercenary if there was money involved! We just need to convert S now and we could have litte poker tournaments! It was hard going for me as I kept losing the plot and not remembering which cards I had and what cards were winning hands. Really good fun though, even with the oxygen concentrator chugging away in the background!
I emailed Oxford today to ask if the blood tests had come back as its 6 weeks now. Hopefully I will get a response soon. The physio department at the local hospital contacted me today for the stress test as Ive had to put it off again. The physio was really lovely and very switched on. Couldn't understand why I was being given oxygen at home but had no respiratory consultant and that no investigations were taking place. She couldn't understand why the GP thought there would be an issue with the PCT. She is going to contact the Respiratory Consultants secretary and ask if he will refer me to London or at least write to my GP to see if he can push things along. So at last something maybe happening.
Talking to the physio today restored my faith in the people that work in the NHS. That there are people that actually care and will do their best for a patient.
What a lovely day ......
We taught E how to play poker today! I have the feeling she could get quite mercenary if there was money involved! We just need to convert S now and we could have litte poker tournaments! It was hard going for me as I kept losing the plot and not remembering which cards I had and what cards were winning hands. Really good fun though, even with the oxygen concentrator chugging away in the background!
I emailed Oxford today to ask if the blood tests had come back as its 6 weeks now. Hopefully I will get a response soon. The physio department at the local hospital contacted me today for the stress test as Ive had to put it off again. The physio was really lovely and very switched on. Couldn't understand why I was being given oxygen at home but had no respiratory consultant and that no investigations were taking place. She couldn't understand why the GP thought there would be an issue with the PCT. She is going to contact the Respiratory Consultants secretary and ask if he will refer me to London or at least write to my GP to see if he can push things along. So at last something maybe happening.
Talking to the physio today restored my faith in the people that work in the NHS. That there are people that actually care and will do their best for a patient.
What a lovely day ......
Monday, 25 January 2010
Still Waiting ......
It will be 6 weeks on Wednesday since I had my blood drawn for tests and Im still non the wiser as to if anything has shown up in them. MG seems to be the disease that is all about waiting. Blood tests take an age, neurologists adopt a wait and see approach, its all just waiting, waiting, waiting. Never any doing!
Im also waiting to hear whether or not my request to be seen by a specialist in London will be allowed. I have no idea how long it takes to get the Primary Care Trusts approval or for my GP to contact the Oxford Dr. Again more waiting in limbo land and still no effective treatment.
On a positive note I saw my 18 week old Nephew on Saturday. I haven't seen him since he was 4 weeks old and hes huge now! I held him and played with him for around an hour. I have been struggling to use my arms ever since. It shocks me at how weak I have become that I struggle to hold a baby. I dont mind my arms being weak, it was a good use of energy and happy to pay the price. I get more upset when I have wasted energy on something that doesn't bring rewards or if I wake up weak and feeble. That feels dreadfully unfair.
Im also waiting to hear whether or not my request to be seen by a specialist in London will be allowed. I have no idea how long it takes to get the Primary Care Trusts approval or for my GP to contact the Oxford Dr. Again more waiting in limbo land and still no effective treatment.
On a positive note I saw my 18 week old Nephew on Saturday. I haven't seen him since he was 4 weeks old and hes huge now! I held him and played with him for around an hour. I have been struggling to use my arms ever since. It shocks me at how weak I have become that I struggle to hold a baby. I dont mind my arms being weak, it was a good use of energy and happy to pay the price. I get more upset when I have wasted energy on something that doesn't bring rewards or if I wake up weak and feeble. That feels dreadfully unfair.
Friday, 22 January 2010
why does it take so long?
Ive made many friends through the internet via forums for which I am truly thankful for.
Through reading all the various threads on different forums it has become quite clear to me that the battle to get a diagnosis of Myasthenia Gravis is common throughout the world, regardless of the standard of medical care provided in the patients country.
Someone once posted on a forum that the average length of time it took a female to get a diagnosis of MG was 7-8 years! This diagnosis usually came after many visits to many "specialists" and usually involved some aspect of metal health involvement. As far too often patients are told that the illness "is all in their heads". On the other hand the length of time it took male patients was 12 -24 months. So why are the men being taken more seriously than the other 51% of the worlds population? Have we really moved no further on than the 19th Century in our beliefs that a womans uterus is what is causing her "hysteria"?
Some of the personal stories on the forums make you want to weep. One patient has tested positive for ACHR and is still being told that they do not have MG. Other patients have reached the point of mechanical ventilation before the diagnosis is confirmed, despite telling their Dr's, for years in some cases, that they are having problems breathing, swallowing or even moving. Others have been discharged from hospital unable to feed themselves or walk and have been told they are suffering from coversion disorder.I met another MG patient in person it had taken them several years to be diagnosed. They were initially diagnosed with anorexia as they had become dangerously thin. At no point did anyone examine why this patient couldn't eat or swallow properly. It was far easier to write them off as suffering from anorexia, which meant in effect if they didn't improve it was down to them, not that the Dr's had misdiagnosed them. Some have been sectioned under the mental health act. This is a criminal way to treat people who are seriously ill. Yet it goes on unreported and ignored. These cases are from developed countries not the developing world. Yet we seem to be unable or unwilling to do anything about this.
Unfortunately it is women who are usually told that it is all in their head. What is more frightening is that the people that are telling them this do not have qualifications in the field of mental health, it is neurologists that are saying this. A lot of times when these patients see experts in mental health they are told that there is nothing mentally wrong with them.
When I was in hospital last year I met a woman who was in her 80's and had just been diagnosed with MG. This woman was an extremely strong woman. She had lost two husbands one to cancer and her second husband who had MS she had nursed for 25 years. She was very old school and she believed and trusted in everything that her GP told her. She had been his patient for many years. Six years ago, she developed problems swallowing, smiling and could no longer whistle. Her GP told her that he believed she had suffered a small stroke. There were no further investigations done to prove that the diagnosis was correct it was accepted due to her age that this was the case. When she continued to deteriorate, which was very slowly it was again suggested that she had suffered another small stroke. By this point she could not eat solid foods and her voice was always slurred. Again no investigations took place. It took 6 years for her to deteriorate and collapse. When I met her she had been fed via a nasal gastric tube for around a month and had just recieved her diagnosis. She had been started on steroids and mestinon and was improving every day. She told me she felt as good as she did when she was in her thirties. By the end of her stay she was driving me nuts with her constant whistling! She whistled all the time as for 6 years she had been unable to.
I understand that the medical profession say that this is rare but rare doesn't mean it doesn't exist. Rare just means it doesn't happen that often but it still happens. My concern is that MG isn't actually as rare as the medical profession make it out to be. I think that there are many other people out there like me who are battling to get the correct diagnosis. Until we are officially diagnosed we do not end up in the statistics. Or how about the people that are never diagnosed and/ or are given an incorrect diagnosis? How many people out there are falling into this category?
My concern is its takes far too long for patients to be diagnosed or for this disease to even be considered. My mother used to just sit and type all my symptoms into a search engine and repeatedly it would come back with Myasthenia Gravis. If my mum who has no medical training can do this why can't the Dr's?
Through reading all the various threads on different forums it has become quite clear to me that the battle to get a diagnosis of Myasthenia Gravis is common throughout the world, regardless of the standard of medical care provided in the patients country.
Someone once posted on a forum that the average length of time it took a female to get a diagnosis of MG was 7-8 years! This diagnosis usually came after many visits to many "specialists" and usually involved some aspect of metal health involvement. As far too often patients are told that the illness "is all in their heads". On the other hand the length of time it took male patients was 12 -24 months. So why are the men being taken more seriously than the other 51% of the worlds population? Have we really moved no further on than the 19th Century in our beliefs that a womans uterus is what is causing her "hysteria"?
Some of the personal stories on the forums make you want to weep. One patient has tested positive for ACHR and is still being told that they do not have MG. Other patients have reached the point of mechanical ventilation before the diagnosis is confirmed, despite telling their Dr's, for years in some cases, that they are having problems breathing, swallowing or even moving. Others have been discharged from hospital unable to feed themselves or walk and have been told they are suffering from coversion disorder.I met another MG patient in person it had taken them several years to be diagnosed. They were initially diagnosed with anorexia as they had become dangerously thin. At no point did anyone examine why this patient couldn't eat or swallow properly. It was far easier to write them off as suffering from anorexia, which meant in effect if they didn't improve it was down to them, not that the Dr's had misdiagnosed them. Some have been sectioned under the mental health act. This is a criminal way to treat people who are seriously ill. Yet it goes on unreported and ignored. These cases are from developed countries not the developing world. Yet we seem to be unable or unwilling to do anything about this.
Unfortunately it is women who are usually told that it is all in their head. What is more frightening is that the people that are telling them this do not have qualifications in the field of mental health, it is neurologists that are saying this. A lot of times when these patients see experts in mental health they are told that there is nothing mentally wrong with them.
When I was in hospital last year I met a woman who was in her 80's and had just been diagnosed with MG. This woman was an extremely strong woman. She had lost two husbands one to cancer and her second husband who had MS she had nursed for 25 years. She was very old school and she believed and trusted in everything that her GP told her. She had been his patient for many years. Six years ago, she developed problems swallowing, smiling and could no longer whistle. Her GP told her that he believed she had suffered a small stroke. There were no further investigations done to prove that the diagnosis was correct it was accepted due to her age that this was the case. When she continued to deteriorate, which was very slowly it was again suggested that she had suffered another small stroke. By this point she could not eat solid foods and her voice was always slurred. Again no investigations took place. It took 6 years for her to deteriorate and collapse. When I met her she had been fed via a nasal gastric tube for around a month and had just recieved her diagnosis. She had been started on steroids and mestinon and was improving every day. She told me she felt as good as she did when she was in her thirties. By the end of her stay she was driving me nuts with her constant whistling! She whistled all the time as for 6 years she had been unable to.
I understand that the medical profession say that this is rare but rare doesn't mean it doesn't exist. Rare just means it doesn't happen that often but it still happens. My concern is that MG isn't actually as rare as the medical profession make it out to be. I think that there are many other people out there like me who are battling to get the correct diagnosis. Until we are officially diagnosed we do not end up in the statistics. Or how about the people that are never diagnosed and/ or are given an incorrect diagnosis? How many people out there are falling into this category?
My concern is its takes far too long for patients to be diagnosed or for this disease to even be considered. My mother used to just sit and type all my symptoms into a search engine and repeatedly it would come back with Myasthenia Gravis. If my mum who has no medical training can do this why can't the Dr's?
Wednesday, 20 January 2010
Referral
I had an email today from Dr Y regarding my referral to London to the pulmanologist. Apparently he needs to liase with Oxford and take advice from the PCT. So I am no further on at present. Find it quite amusing that he is no longer consulting Dr X regarding my treatment.
Had a letter from the local hospitals physio department today as well. In October 2009 I was supposed to go for an assessment with the physio but I was too sick at that point to be put on a treadmill. They want me to go on the 2nd Feb, but again I am not well enough to go on a treadmill. Im barely managing to get around my house and they will certainly not be looking after me at home after they nearly kill me on that thing. Im not going to ring, but I shall write to them instead to try and get them to understand how bad things are at the moment. What I actually need right now is a proper assessment done by a Dr not a physio.
My arms are shaking now just trying to type. Im actually feeling ok, but as the morning goes on I am starting to feel weaker. However I am due another mestinon right about now. Just waiting for my pill alarm to go off. I have to have an alarm as I forget to take the stuff, even though I know I get progressively weaker. I also have the problem that 10 mins after I have taken it I can forget if I did take it. You dont want to overdose on this stuff!
Had a letter from the local hospitals physio department today as well. In October 2009 I was supposed to go for an assessment with the physio but I was too sick at that point to be put on a treadmill. They want me to go on the 2nd Feb, but again I am not well enough to go on a treadmill. Im barely managing to get around my house and they will certainly not be looking after me at home after they nearly kill me on that thing. Im not going to ring, but I shall write to them instead to try and get them to understand how bad things are at the moment. What I actually need right now is a proper assessment done by a Dr not a physio.
My arms are shaking now just trying to type. Im actually feeling ok, but as the morning goes on I am starting to feel weaker. However I am due another mestinon right about now. Just waiting for my pill alarm to go off. I have to have an alarm as I forget to take the stuff, even though I know I get progressively weaker. I also have the problem that 10 mins after I have taken it I can forget if I did take it. You dont want to overdose on this stuff!
Tuesday, 19 January 2010
Bad Day
Today has not been a good day.
I woke up and came down stairs, within ten minutes I had bilateral ptosis (both eye lids drooping so that they are shut.) I took mestinon and within 30mins it had resolved. I was still feeling pretty weak so I just sat around on the sofa.
My vision has been a bit wonky today resulting in several things being knocked over. Its so frustrating. I know "normal" people knock things over but they dont do this on a daily basis and over and over again.
At 1230pm hubs and I were having some lunch and my eyes started to jerk around in my head. We were watching "america's next top model", we love it and have followed every season so far. Its cycle 13 here. I didn't last through the programme, first the right eye shut and then the left one started to join in. Combined with the nystagmus there was nothing else left to do but go to bed. I had only taken a mestinon just over an hour before hand but at the moment its not lasting very long. I took another mestinon when I got upstairs and crawled into bed.
I hate being in bed my immediate reaction is to fight against it. I start thinking about moving my bed. Physically impossible for me but the idea plays on my mind. Once an idea is there its very difficult for me to shake off. Theres washing to be done and has hubs changed the load over? This starts to gnaw away at me. I try and block those thoughts out. Luckily the radio catches my attention its a Sherlock Holmes story "the crooked man". I haven't heard it before and soon the scenes are playing out in my mind as the words are being spoken.
The next thing I know its 1445 Ive been asleep for an hour and I feel rested. Both eyes will open.
I just wonder how long I have to be in this state before someone will start treating me. The post has been and gone and there is still no news on my blood test results. Its been 5 weeks tomorrow.
I woke up and came down stairs, within ten minutes I had bilateral ptosis (both eye lids drooping so that they are shut.) I took mestinon and within 30mins it had resolved. I was still feeling pretty weak so I just sat around on the sofa.
My vision has been a bit wonky today resulting in several things being knocked over. Its so frustrating. I know "normal" people knock things over but they dont do this on a daily basis and over and over again.
At 1230pm hubs and I were having some lunch and my eyes started to jerk around in my head. We were watching "america's next top model", we love it and have followed every season so far. Its cycle 13 here. I didn't last through the programme, first the right eye shut and then the left one started to join in. Combined with the nystagmus there was nothing else left to do but go to bed. I had only taken a mestinon just over an hour before hand but at the moment its not lasting very long. I took another mestinon when I got upstairs and crawled into bed.
I hate being in bed my immediate reaction is to fight against it. I start thinking about moving my bed. Physically impossible for me but the idea plays on my mind. Once an idea is there its very difficult for me to shake off. Theres washing to be done and has hubs changed the load over? This starts to gnaw away at me. I try and block those thoughts out. Luckily the radio catches my attention its a Sherlock Holmes story "the crooked man". I haven't heard it before and soon the scenes are playing out in my mind as the words are being spoken.
The next thing I know its 1445 Ive been asleep for an hour and I feel rested. Both eyes will open.
I just wonder how long I have to be in this state before someone will start treating me. The post has been and gone and there is still no news on my blood test results. Its been 5 weeks tomorrow.
Monday, 18 January 2010
Diagnosis
Having read through my postings I have realised I never told you what happened after August 2007.
I saw a GP at the local practice and took some ice with me. I performed the test in front of her and showed her it raised my eye lid and eyebrow back to its normal position. On showing her this she prescribed me Neostigmine Bromide ( a generic drug and obviously cheaper than the standard issue Mestinon) and referred me to Dr X.
The Neostigmine Bromide took 5 days to track down, due to the fact hardly anybody uses it for MG. The pharmacy dispensed it and gave me no patient information leaflet. I used it for the first time and within 20 minutes my eye opened and stayed open for 4 hours. It was amazing, my colleagues couldn't believe what they were seeing. I still felt incredibly weak, but I could actually see for the first time in 8 months.
Unfortunately the neostigmine bromide really didn't agree with me. The side effects started on the 2nd day of taking it. My stomach felt like it was full of wind and was quite bloated and uncomfortable. By day three I was drooling like a dog. I had stomach pain that can only be compared with bowel adhesions, the pain was making me scream out loud. Then the worse thing started, I was vomitting and couldn't stop. I was in such a state my husband drove me to the local casualty unit, where I was rushed straight in. The local unit is attached to the drs surgery so an urgent call was put out for the Dr to attend. 2 hours later the Dr turned up. Unfortuantely it was the one who my mother had called a wanker! The curtins were drawn around my bed so he didn't know where I was in the unit. I was right beside the nurses station.
The nurse said to him " its a patient with occular myasthenia, having a reaction to medication"
The GP responded "she doesn't have myasthenia, we dont even know if the medication works"
Nurse "It works alright, her eye was open when she came in now the dose has worn off her eye has closed. Oh and by the way she can hear every word your saying"
With that the curtains were wipped back and a red faced GP was stood there.
"The medication works then?
"Yes"
"oh"
Not a dynamic conversation I agree, but quite funny as if it was depression I wouldn't have responded to it. He doesn't apologise for the two hour delay but instead tells me not to take the neostigmine bromide and to see my GP. Well that was worth waiting for.
I saw the GP was prescribed Mestinon and Probanthine to counter act the effect of the mestinon. Unfortunately mestinon or neostigmine bromide, dont discriminate between what muscles need help and which dont. It stimulates the sympathetic nervous system - which means it stimulates Salivation( drooling), Lacrimation (tears), Urination (makes you wee more) and best of all Defecation (poo). The Probanthine would hopefully reduce these symptoms.( it doesn't and I need to take loperimide to stop the violent stomach cramps and excessive pooing)
I get my appointment through to see Dr X in October 2007. He concurs that it is Occular MG, despite me telling him that I am weak all over this is ignored.
MG is broken up into many groups but basically there are two main groups Occular MG (effects the eyes only) and Generalised MG (effects the whole body). The MGA a charity in great Britain which aims to educate Drs says that Occular MG should not be diagnosed until two years have passed after initial diagnosis. MG often shows its first symptoms in the eyes with double vision or Ptosis, however the majority of patients will then go on to develop more symptoms in the following two years after the initial diagnosis. I had only started proper symptoms from the January, so it was far too early to say it was occular MG.
Alarm bells should have been ringing for me at this point as Dr X was supposed to be the local MG expert, but seemed not to know this piece of information. I myself didn't know this until much later, but at this point I was happy just having a diagnosis.
I saw Dr X again in January 2008, I'd had a chest CT to check for a thyoma which was negative. I'd had the standard blood tests repeated and again they came back negative. At this point Dr X was happy to state I had occular MG. However I was getting weaker. I struggled to dry my hair with a hairdryer, I could no longer change a duvet cover, I was falling over as my sight was being effected. I was suffering with shortness of breath. I told Dr X all this and he told me to reduce my working hours and that I should continue taking the mestinon. I was unhappy, but at this point I still trusted him. It wouldn't be until much later that I would realise that the majority of patients with Occular MG find mestinon alone doesn't stop their visual symptoms they need steroids such as prenisolone to help them live a normal life.
Work was a constant battle. I was exhausted, frightened and alone. I struggled daily with fatigue and other peoples ignorance. I felt like I was drowning and the more I asked for help the further away the life buoy was being moved.
On 31st May 2008 I came home from work and could barely move. By the following day I couldn't get out of bed and by the afternoon I was in an ambulance on my way to hospital.
Thats how quickly it happened. I truly believe that this all could have been avoided if my local MG expert Dr X had listened to me or had even known how to treat MG. I probably would have had to reduce my working hours but I would have been stable and I would have been able to lead a fulfilling and productive life.
In June 2008 I was put on steroids. Initially I responded very well but it didn't last. By October 2008 I was virtually housebound and using a wheel chair to get out and about. Dr X perplexed by this situation referred me to the Oxford clinic.
I was so full of hope when I went to the Oxford clinic. They were the experts and would know what to do to get me better. How wrong I was. Dr X had told me he was sending me there for them to come up with ideas for medication. That was a blatant lie, I was told as soon as I got there I had been sent as he no longer believed that I had MG. It was pretty clear from the outset that Dr Z at the clinic had made up his/her mind before I got there. Within 10 minutes of examining me he/she declared I was suffering from stress and ME.
To say my world fell apart that day would be a mild understatement. I was in the process of being ill health retired from my job and now the steroids that had initially helped me were to be stopped. I knew that I was going to get a lot worse before they realised their mistake and I knew it was going to get dangerous. No one in the medical profession seemed to be able to understand that fact.
I left the Oxford clinic broken and despondent. What the hell was going to happen to me now?
I saw a GP at the local practice and took some ice with me. I performed the test in front of her and showed her it raised my eye lid and eyebrow back to its normal position. On showing her this she prescribed me Neostigmine Bromide ( a generic drug and obviously cheaper than the standard issue Mestinon) and referred me to Dr X.
The Neostigmine Bromide took 5 days to track down, due to the fact hardly anybody uses it for MG. The pharmacy dispensed it and gave me no patient information leaflet. I used it for the first time and within 20 minutes my eye opened and stayed open for 4 hours. It was amazing, my colleagues couldn't believe what they were seeing. I still felt incredibly weak, but I could actually see for the first time in 8 months.
Unfortunately the neostigmine bromide really didn't agree with me. The side effects started on the 2nd day of taking it. My stomach felt like it was full of wind and was quite bloated and uncomfortable. By day three I was drooling like a dog. I had stomach pain that can only be compared with bowel adhesions, the pain was making me scream out loud. Then the worse thing started, I was vomitting and couldn't stop. I was in such a state my husband drove me to the local casualty unit, where I was rushed straight in. The local unit is attached to the drs surgery so an urgent call was put out for the Dr to attend. 2 hours later the Dr turned up. Unfortuantely it was the one who my mother had called a wanker! The curtins were drawn around my bed so he didn't know where I was in the unit. I was right beside the nurses station.
The nurse said to him " its a patient with occular myasthenia, having a reaction to medication"
The GP responded "she doesn't have myasthenia, we dont even know if the medication works"
Nurse "It works alright, her eye was open when she came in now the dose has worn off her eye has closed. Oh and by the way she can hear every word your saying"
With that the curtains were wipped back and a red faced GP was stood there.
"The medication works then?
"Yes"
"oh"
Not a dynamic conversation I agree, but quite funny as if it was depression I wouldn't have responded to it. He doesn't apologise for the two hour delay but instead tells me not to take the neostigmine bromide and to see my GP. Well that was worth waiting for.
I saw the GP was prescribed Mestinon and Probanthine to counter act the effect of the mestinon. Unfortunately mestinon or neostigmine bromide, dont discriminate between what muscles need help and which dont. It stimulates the sympathetic nervous system - which means it stimulates Salivation( drooling), Lacrimation (tears), Urination (makes you wee more) and best of all Defecation (poo). The Probanthine would hopefully reduce these symptoms.( it doesn't and I need to take loperimide to stop the violent stomach cramps and excessive pooing)
I get my appointment through to see Dr X in October 2007. He concurs that it is Occular MG, despite me telling him that I am weak all over this is ignored.
MG is broken up into many groups but basically there are two main groups Occular MG (effects the eyes only) and Generalised MG (effects the whole body). The MGA a charity in great Britain which aims to educate Drs says that Occular MG should not be diagnosed until two years have passed after initial diagnosis. MG often shows its first symptoms in the eyes with double vision or Ptosis, however the majority of patients will then go on to develop more symptoms in the following two years after the initial diagnosis. I had only started proper symptoms from the January, so it was far too early to say it was occular MG.
Alarm bells should have been ringing for me at this point as Dr X was supposed to be the local MG expert, but seemed not to know this piece of information. I myself didn't know this until much later, but at this point I was happy just having a diagnosis.
I saw Dr X again in January 2008, I'd had a chest CT to check for a thyoma which was negative. I'd had the standard blood tests repeated and again they came back negative. At this point Dr X was happy to state I had occular MG. However I was getting weaker. I struggled to dry my hair with a hairdryer, I could no longer change a duvet cover, I was falling over as my sight was being effected. I was suffering with shortness of breath. I told Dr X all this and he told me to reduce my working hours and that I should continue taking the mestinon. I was unhappy, but at this point I still trusted him. It wouldn't be until much later that I would realise that the majority of patients with Occular MG find mestinon alone doesn't stop their visual symptoms they need steroids such as prenisolone to help them live a normal life.
Work was a constant battle. I was exhausted, frightened and alone. I struggled daily with fatigue and other peoples ignorance. I felt like I was drowning and the more I asked for help the further away the life buoy was being moved.
On 31st May 2008 I came home from work and could barely move. By the following day I couldn't get out of bed and by the afternoon I was in an ambulance on my way to hospital.
Thats how quickly it happened. I truly believe that this all could have been avoided if my local MG expert Dr X had listened to me or had even known how to treat MG. I probably would have had to reduce my working hours but I would have been stable and I would have been able to lead a fulfilling and productive life.
In June 2008 I was put on steroids. Initially I responded very well but it didn't last. By October 2008 I was virtually housebound and using a wheel chair to get out and about. Dr X perplexed by this situation referred me to the Oxford clinic.
I was so full of hope when I went to the Oxford clinic. They were the experts and would know what to do to get me better. How wrong I was. Dr X had told me he was sending me there for them to come up with ideas for medication. That was a blatant lie, I was told as soon as I got there I had been sent as he no longer believed that I had MG. It was pretty clear from the outset that Dr Z at the clinic had made up his/her mind before I got there. Within 10 minutes of examining me he/she declared I was suffering from stress and ME.
To say my world fell apart that day would be a mild understatement. I was in the process of being ill health retired from my job and now the steroids that had initially helped me were to be stopped. I knew that I was going to get a lot worse before they realised their mistake and I knew it was going to get dangerous. No one in the medical profession seemed to be able to understand that fact.
I left the Oxford clinic broken and despondent. What the hell was going to happen to me now?
I have emailed Dr Y today with my request to see the Dr in London. I will have to wait now and see if he will allow my referral. I explained that the Dr there wants to do a sleep study and check levels of transcutaneous CO2, as this can pick up problems that other tests wouldn't be able to detect.
Its all in Dr Y's hands now. I have told him to ring me if he refuses as I will not be able to get to the surgery to argue with him. I'm hoping it should go through. But you never know. After all Dr Y did tell me he was 100% sure that I didn't have MG and yet a world leading expert says we can't rule it out.
Its great when you have to diagnose yourself and then get the Drs to beleive you!
Its all in Dr Y's hands now. I have told him to ring me if he refuses as I will not be able to get to the surgery to argue with him. I'm hoping it should go through. But you never know. After all Dr Y did tell me he was 100% sure that I didn't have MG and yet a world leading expert says we can't rule it out.
Its great when you have to diagnose yourself and then get the Drs to beleive you!
So whats it like?
Im often asked by people to describe what its like living with this disease. Its very hard to explain, because unless you have lived with it, its very hard for another person to truly understand.
Today for example I awoke with both eyes shut and I was unable to open them. This is the first time this has happened on waking. I have had bilateral ptosis before, but never first thing in the morning. Luckily I keep my mestinon beside the bed so I just had to fumble around until I found it. Once I had taken the pill and waited for 30 minutes both eyes opened. But sometimes one pill isn't enough.
Ok so you might think not being able to open your eyes isn't that big of a deal, but what if you need the toilet? Or you are home alone as I am? The only way I can see in this situation is to either hold my eyes open or to tape them open. Neither option is very comfortable.
Other symptoms I get on a daily basis are double vision, again not a big deal. But what if you are trying to climb stairs, cook a meal or even send a text message. Im lucky that I know that the image on the left is the correct one and I can normally work my way around it. In the beginning though I had to just go to bed and close my eyes until it went away.
I also have bouts of nystagmus (rapid jerky eye movements). This gets so bad that I just can't see. My eyes just refuse to focus on anything and just jerk around in their sockets. Again the only thing that you can do for this is to lie down and close your eyes. Trying to function when your eyes are behaving like this just leads to extreme nausea. Your eyes send messages to your brain which in turn sends messages to your inner ear which controls your balance. So if your eyes aren't focusing on anything you end up feeling sick.
Due to the unpredictability of my eyes I can no longer drive.
Most of the time I feel incredibly weak. Its like having a set of weights tied to each limb. You shake with fatigue on every movement. Standing in the shower has become impossible, I have to use a shower stool. Standing to do the dishes - no I have to sit on a stool. Holding my arm out to change channels on the tv with the remote can also be a challenge.
Every day is a constant battle on deciding on what I will compromise on. Do I dry my hair after a shower or will that mess my arms up for the day? Do I try and do some cleaning or will I not be able to walk and get myself to the toilet for the afternoon. Every physical action has a physical consequence.
You can usually tell how Im feeling by what Im wearing. If Im in my pj's I haven't got out of bed. If Im wearing a tracksuit I should be in bed, but I feel so isolated up there Ive got up. The rest of the time I try and avoid anything with buttons. My fingers just cant cope with them! So its jeans that are too big around the waist so I can pull them up and down avoiding the flies and button. I also wear fleece jumpers so I can just pull them on and off.
Breathing is also an issue for me. Some days it feels like an elephant has sat on my chest and I can't take a deep breath. Doing anything physical can leave me fighting for breath. My pulse sky rockets up to 145 -160 bpm and it takes a while to recover. Today I tried a test that they use to assess your breathing. You take in a deep breath and then as you exhale you count out loud. Normal people can get anywhere between 40-50. I managed 17 with great difficulty. I noticed the other day when talking with a neighbour I couldn't complete a sentence without taking in a breath. It can be scary at times.
My speech can be affected, causing me to sound like Im coming down with a cold or I can start to slur and people assume that I am drunk. I answered the telephone once when my speach was bad and the caller said "your drunk" and put the phone down on me. My voice can also become very quiet or non existent. My tongue can also become weak causing me to not be able to form words. When this happens I have to speak very slowly so that my tongue has time to catch up. It can be embarrassing, but luckily people that know me understand.
The only thing I can just about cope with is using the internet, but there are some days that I can't even manage that. It could be that I can't physically lift the laptop, or that my fingers wont work to type or it could be that my eyes are playing up so I can't see the screen.
Luckily I have made friends with people all around the world and I am part of forums on numerous topics. That gives me something to do with my days, which at times can be very long and lonely.
I started this blog to give me something to do and as a kind of therapy. I thank the lord that I live in this digital age other wise I would be truly alone.
Today for example I awoke with both eyes shut and I was unable to open them. This is the first time this has happened on waking. I have had bilateral ptosis before, but never first thing in the morning. Luckily I keep my mestinon beside the bed so I just had to fumble around until I found it. Once I had taken the pill and waited for 30 minutes both eyes opened. But sometimes one pill isn't enough.
Ok so you might think not being able to open your eyes isn't that big of a deal, but what if you need the toilet? Or you are home alone as I am? The only way I can see in this situation is to either hold my eyes open or to tape them open. Neither option is very comfortable.
Other symptoms I get on a daily basis are double vision, again not a big deal. But what if you are trying to climb stairs, cook a meal or even send a text message. Im lucky that I know that the image on the left is the correct one and I can normally work my way around it. In the beginning though I had to just go to bed and close my eyes until it went away.
I also have bouts of nystagmus (rapid jerky eye movements). This gets so bad that I just can't see. My eyes just refuse to focus on anything and just jerk around in their sockets. Again the only thing that you can do for this is to lie down and close your eyes. Trying to function when your eyes are behaving like this just leads to extreme nausea. Your eyes send messages to your brain which in turn sends messages to your inner ear which controls your balance. So if your eyes aren't focusing on anything you end up feeling sick.
Due to the unpredictability of my eyes I can no longer drive.
Most of the time I feel incredibly weak. Its like having a set of weights tied to each limb. You shake with fatigue on every movement. Standing in the shower has become impossible, I have to use a shower stool. Standing to do the dishes - no I have to sit on a stool. Holding my arm out to change channels on the tv with the remote can also be a challenge.
Every day is a constant battle on deciding on what I will compromise on. Do I dry my hair after a shower or will that mess my arms up for the day? Do I try and do some cleaning or will I not be able to walk and get myself to the toilet for the afternoon. Every physical action has a physical consequence.
You can usually tell how Im feeling by what Im wearing. If Im in my pj's I haven't got out of bed. If Im wearing a tracksuit I should be in bed, but I feel so isolated up there Ive got up. The rest of the time I try and avoid anything with buttons. My fingers just cant cope with them! So its jeans that are too big around the waist so I can pull them up and down avoiding the flies and button. I also wear fleece jumpers so I can just pull them on and off.
Breathing is also an issue for me. Some days it feels like an elephant has sat on my chest and I can't take a deep breath. Doing anything physical can leave me fighting for breath. My pulse sky rockets up to 145 -160 bpm and it takes a while to recover. Today I tried a test that they use to assess your breathing. You take in a deep breath and then as you exhale you count out loud. Normal people can get anywhere between 40-50. I managed 17 with great difficulty. I noticed the other day when talking with a neighbour I couldn't complete a sentence without taking in a breath. It can be scary at times.
My speech can be affected, causing me to sound like Im coming down with a cold or I can start to slur and people assume that I am drunk. I answered the telephone once when my speach was bad and the caller said "your drunk" and put the phone down on me. My voice can also become very quiet or non existent. My tongue can also become weak causing me to not be able to form words. When this happens I have to speak very slowly so that my tongue has time to catch up. It can be embarrassing, but luckily people that know me understand.
The only thing I can just about cope with is using the internet, but there are some days that I can't even manage that. It could be that I can't physically lift the laptop, or that my fingers wont work to type or it could be that my eyes are playing up so I can't see the screen.
Luckily I have made friends with people all around the world and I am part of forums on numerous topics. That gives me something to do with my days, which at times can be very long and lonely.
I started this blog to give me something to do and as a kind of therapy. I thank the lord that I live in this digital age other wise I would be truly alone.
Sunday, 17 January 2010
17th January 2010
I can't believe that I haven't been on here for more than a year. Things have been pretty tough in a lot of ways and when I started this blog I had no idea how this journey was going to pan out.
So whats been happening? Well I started the blog in June 2008 when I had just spent a week in hospital. I was put on Prednisolone which helped to begin with and then I just started to get worse. It wasn't the transient weakness that some MGers have. This was an exascerbation of the condition. On top of that I was battling my now ex employers and starting a case against them for disability discrimination.
As the months went by I lost contact with more and more people. People that you thought were good friends and would do anything for you started to disappear.People that you had helped and stuck your neck on the line for, people you thought you would never lose contact with. They seemed to think that just asking your husband how you are when they see him is good form. Picking up the phone would be nice or popping around for a coffee even better. I spend 9 hours (at least ) a day, five days a week alone. Do you know whats crazy? The doctors in my neck of the woods think that I do this for attention. What attention? I live almost in exile from the rest of humanity.
In January 2009 I suffered what is close to what people with MG call a crisis. It happened over the space of a couple of hours. It felt like someone was pushing on my chest preventing me from breathing. We called an ambulance and when they took my oxygen saturation level its had dropped to 92%. I was wacked on Oxygen and at some point during the journey I started to lose consciousness. I could hear the guy talking to me but I couldn't respond. With that lights and sirens started. It wasn't scary I just couldn't understand the panic, I could here them but I was swaythed in this warm fuzzy feeling. Quite bizarre now.
What I fail to mention is that due to my decline whilst on steroids and my repeated negative blood tests, the diagnosis of MG had been taken away. (MG Myasthenia Gravis). I had been seen at Oxford by a Dr who decided I didn't have MG but was suffering from stress and ME. It was decided that the steroids should be tapered down and stopped. If more symptoms appeared I was to be referred back.
As soon as the steroids started to be tapered, I had more symptoms. Double vision, bilateral ptosis (so both eyes were closed I had to tape them open if I wanted to see), choking on my own saliva, choking on water or food. In January 2009 I was on less than 10mg of prednisolone and things were just getting worse.
I was wheeled straight into resus. My blood gases (venous) were taken and showed exactly what they should for someone who is having a crisis, mine were borderline. However due to the "rarerity" of this illness the results were misinterpreted as a panic attack. I went from one minute being told that they would probably have to put me into a drug induced coma (nice) and take over my breathing, to being told I was having a panic attack, due to the letter from Oxford being in my notes. From then on in I was treated with utter disdain by the medical staff.
Unfortunately 2009 was peppered with hospitalisations. I lost count I think it was about 6. The only time I was treated with any respect was in August 2009 when I had a kidney infection and was on a surgical ward.
In June 2009 I was in as I couldn't open my mouth and was very weak. I had a nasal gastric tube fitted, which actually wasn't that bad. However I truly believe that there was something written in my notes about me having munchausen. Ive asked for a copy of my notes but under UK law they can withold basically anything they like under the guise of protecting you. In my notes the doctors constantly make sweeping statements that are not related to my medical issues, make derogatory comments about my mother and my husband. They also cannot tell their left from their right. Which isn't that reassuring. I have ptosis and facial weakness on my right side of my face. This was constantly referred to as left side weakness!
Anyway the protocol for a hospitalisation now is Im either unconscious or dead. I wont go in otherwise due to the treatment I recieved on B ward.
In May 2009 my breathing problems were investigated. I had to wear a pulse oximeter for around 17 hours. This continously showed dips in my levels of oxygination on exertion. Now by exertion I mean just walking around or talking on the phone. I dont mean doing a five mile hike. Unfortunately the Dr that carried out this investigation is an expert in COPD not neuro muscular disorders. His opinion was that I hold my breath when moving around. Now thats certainly possible. However I had to fill in a chart detailing my activity throughout the day when I was wearing the pulse ox. One of the activities where my o2 levels dropped when when I was talking on the phone. You can't hold your breath whilst talking. Its just not possible.
Some how my husband and I (and mum) managed to convince my hospital consultant (neuro) that these breathing episodes (where I struggle to breathe) were real and I now have an oxygen concentrator and oxygen cylinder at home. This has helped a little.
So whats happening now?
Well the disease has progessed to the point where I struggle with everything. I tend to only leave the house for medical appointments or hospitalisation.
In December 2009 I went back to the Oxford clinic and was seen by a different Dr. I had explored the possibility of going to a clinic just outside Paris, the Parisian Dr had suggested this Dr at Oxford, so I bit the bullet and went back. Thankfully this Dr hasn't ruled out the possibility of whats known as Seronegative MG which is what I have said it is all along. Ive had bloods taken for a new more sensitive test that has been developed by Angela Vincent and her colleagues at John Radcliffe hospital in Oxford. This new Dr has said even if this test comes back negative it doesn't rule out the condition. The only thing that would is a plasma exchange. If I respond to PLEX its proof positive that I have MG. There are no other conditions being talked about.
I emailed my local neuro last week to update him on how badly I was doing. I haven't seen him since August 2009. Since then I have developed an allergy to penicillin and I also had a typical MG response to an antibiotic called Clarithromycin. The clarithromycin made my weakness much worse and even the mestinon I take every 4 hours could not improve it.
My neuro thanked me for my update, but refuses to do anything until the test results are back. I asked him what his position was on PLEX and he replied that if the Oxford Dr wants to do this he will have to arrange it to take place in his hospital. I still have no idea when I will see my local neuro again. Basically my local neuro who we will call Dr X has told me to fuck off and hes not interested. I have lost all faith in him. How can I trust Dr X, when in the copy of the notes I requested there are no comments there from him. How can I have faith in a man who will do nothing whilst his patient slowly deteriorates? My mum asked me how does he sleep at night? I answered with one eye open I hope as you can sure as hell know Im not the only person he has treated like this.
I understand Drs swear the oath "first do no harm". But the longer he leaves me the more neuro muscular junctions I lose. I face the fear that my body will no longer be able to replace those nmj's. The more damage this disease causes to my body and the less and less likely that it is that I will ever achieve remission. I get so fed up with the constant battle I face with the medical profession. It is a lonely place to be.
My GP isn't much better, we will call him Dr Y. Dr Y and Dr X worked together and Dr Y obviously trusts Dr X never to make any mistakes in patient care. Dr Y wont do anything without consulting Dr X. Dr Y told me in September that he is 100% sure I dont have MG. That would be fine if he had done some basic research on the condition, the tests, the flaws in the tests and the studies published in Medical journals the world over. I have spent the time researching all of these and know that it is perfectly possible to have MG and be negative on the tests, the data proves it. Unfortunately Dr Y and Dr X despite being given the information by me (and paid for by me) chose to ignore it. Dr Y is actually a reasonable Dr, if I ring him regarding any other conditions he is fine and trusts my judgement. He just hides behind the title GP and says hes not a neurologist. He has to be led by Dr X, but what if Dr X is wrong? Because he isn't an expert in the field of MG.
I have to email Dr Y shortly as I want a referral to a London hospital to see a pulmanologist that specialises in neuro muscular disorders. She wants to conduct a sleep study and look at the amount of CO2 Im retaining. The symptoms I am having are to do with CO2 not oxygen. Which is what I can't get X and Y to understand.
I hope Y will refer me. The battle continues
So whats been happening? Well I started the blog in June 2008 when I had just spent a week in hospital. I was put on Prednisolone which helped to begin with and then I just started to get worse. It wasn't the transient weakness that some MGers have. This was an exascerbation of the condition. On top of that I was battling my now ex employers and starting a case against them for disability discrimination.
As the months went by I lost contact with more and more people. People that you thought were good friends and would do anything for you started to disappear.People that you had helped and stuck your neck on the line for, people you thought you would never lose contact with. They seemed to think that just asking your husband how you are when they see him is good form. Picking up the phone would be nice or popping around for a coffee even better. I spend 9 hours (at least ) a day, five days a week alone. Do you know whats crazy? The doctors in my neck of the woods think that I do this for attention. What attention? I live almost in exile from the rest of humanity.
In January 2009 I suffered what is close to what people with MG call a crisis. It happened over the space of a couple of hours. It felt like someone was pushing on my chest preventing me from breathing. We called an ambulance and when they took my oxygen saturation level its had dropped to 92%. I was wacked on Oxygen and at some point during the journey I started to lose consciousness. I could hear the guy talking to me but I couldn't respond. With that lights and sirens started. It wasn't scary I just couldn't understand the panic, I could here them but I was swaythed in this warm fuzzy feeling. Quite bizarre now.
What I fail to mention is that due to my decline whilst on steroids and my repeated negative blood tests, the diagnosis of MG had been taken away. (MG Myasthenia Gravis). I had been seen at Oxford by a Dr who decided I didn't have MG but was suffering from stress and ME. It was decided that the steroids should be tapered down and stopped. If more symptoms appeared I was to be referred back.
As soon as the steroids started to be tapered, I had more symptoms. Double vision, bilateral ptosis (so both eyes were closed I had to tape them open if I wanted to see), choking on my own saliva, choking on water or food. In January 2009 I was on less than 10mg of prednisolone and things were just getting worse.
I was wheeled straight into resus. My blood gases (venous) were taken and showed exactly what they should for someone who is having a crisis, mine were borderline. However due to the "rarerity" of this illness the results were misinterpreted as a panic attack. I went from one minute being told that they would probably have to put me into a drug induced coma (nice) and take over my breathing, to being told I was having a panic attack, due to the letter from Oxford being in my notes. From then on in I was treated with utter disdain by the medical staff.
Unfortunately 2009 was peppered with hospitalisations. I lost count I think it was about 6. The only time I was treated with any respect was in August 2009 when I had a kidney infection and was on a surgical ward.
In June 2009 I was in as I couldn't open my mouth and was very weak. I had a nasal gastric tube fitted, which actually wasn't that bad. However I truly believe that there was something written in my notes about me having munchausen. Ive asked for a copy of my notes but under UK law they can withold basically anything they like under the guise of protecting you. In my notes the doctors constantly make sweeping statements that are not related to my medical issues, make derogatory comments about my mother and my husband. They also cannot tell their left from their right. Which isn't that reassuring. I have ptosis and facial weakness on my right side of my face. This was constantly referred to as left side weakness!
Anyway the protocol for a hospitalisation now is Im either unconscious or dead. I wont go in otherwise due to the treatment I recieved on B ward.
In May 2009 my breathing problems were investigated. I had to wear a pulse oximeter for around 17 hours. This continously showed dips in my levels of oxygination on exertion. Now by exertion I mean just walking around or talking on the phone. I dont mean doing a five mile hike. Unfortunately the Dr that carried out this investigation is an expert in COPD not neuro muscular disorders. His opinion was that I hold my breath when moving around. Now thats certainly possible. However I had to fill in a chart detailing my activity throughout the day when I was wearing the pulse ox. One of the activities where my o2 levels dropped when when I was talking on the phone. You can't hold your breath whilst talking. Its just not possible.
Some how my husband and I (and mum) managed to convince my hospital consultant (neuro) that these breathing episodes (where I struggle to breathe) were real and I now have an oxygen concentrator and oxygen cylinder at home. This has helped a little.
So whats happening now?
Well the disease has progessed to the point where I struggle with everything. I tend to only leave the house for medical appointments or hospitalisation.
In December 2009 I went back to the Oxford clinic and was seen by a different Dr. I had explored the possibility of going to a clinic just outside Paris, the Parisian Dr had suggested this Dr at Oxford, so I bit the bullet and went back. Thankfully this Dr hasn't ruled out the possibility of whats known as Seronegative MG which is what I have said it is all along. Ive had bloods taken for a new more sensitive test that has been developed by Angela Vincent and her colleagues at John Radcliffe hospital in Oxford. This new Dr has said even if this test comes back negative it doesn't rule out the condition. The only thing that would is a plasma exchange. If I respond to PLEX its proof positive that I have MG. There are no other conditions being talked about.
I emailed my local neuro last week to update him on how badly I was doing. I haven't seen him since August 2009. Since then I have developed an allergy to penicillin and I also had a typical MG response to an antibiotic called Clarithromycin. The clarithromycin made my weakness much worse and even the mestinon I take every 4 hours could not improve it.
My neuro thanked me for my update, but refuses to do anything until the test results are back. I asked him what his position was on PLEX and he replied that if the Oxford Dr wants to do this he will have to arrange it to take place in his hospital. I still have no idea when I will see my local neuro again. Basically my local neuro who we will call Dr X has told me to fuck off and hes not interested. I have lost all faith in him. How can I trust Dr X, when in the copy of the notes I requested there are no comments there from him. How can I have faith in a man who will do nothing whilst his patient slowly deteriorates? My mum asked me how does he sleep at night? I answered with one eye open I hope as you can sure as hell know Im not the only person he has treated like this.
I understand Drs swear the oath "first do no harm". But the longer he leaves me the more neuro muscular junctions I lose. I face the fear that my body will no longer be able to replace those nmj's. The more damage this disease causes to my body and the less and less likely that it is that I will ever achieve remission. I get so fed up with the constant battle I face with the medical profession. It is a lonely place to be.
My GP isn't much better, we will call him Dr Y. Dr Y and Dr X worked together and Dr Y obviously trusts Dr X never to make any mistakes in patient care. Dr Y wont do anything without consulting Dr X. Dr Y told me in September that he is 100% sure I dont have MG. That would be fine if he had done some basic research on the condition, the tests, the flaws in the tests and the studies published in Medical journals the world over. I have spent the time researching all of these and know that it is perfectly possible to have MG and be negative on the tests, the data proves it. Unfortunately Dr Y and Dr X despite being given the information by me (and paid for by me) chose to ignore it. Dr Y is actually a reasonable Dr, if I ring him regarding any other conditions he is fine and trusts my judgement. He just hides behind the title GP and says hes not a neurologist. He has to be led by Dr X, but what if Dr X is wrong? Because he isn't an expert in the field of MG.
I have to email Dr Y shortly as I want a referral to a London hospital to see a pulmanologist that specialises in neuro muscular disorders. She wants to conduct a sleep study and look at the amount of CO2 Im retaining. The symptoms I am having are to do with CO2 not oxygen. Which is what I can't get X and Y to understand.
I hope Y will refer me. The battle continues
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