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.
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Monday, 18 January 2010
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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