It's not often I am stunned into silence but yesterday I pretty much was. Unluckily for you, I seem to have found my voice again. So get comfy, get a hot beverage of your choosing and settle in for a bumpy ride. My long-awaited neurology appointment happened and it turned out the way I had dreaded and worse, if that is even possible. I had been stupid and allowed my hopes to rise only for them to be dashed yet again. I am angry, I am hurt but I am trying to be rational and logical in accepting that I haven’t had an MG diagnosis for the last ten years and now is no different.
I had really hoped that this new neurologist would approach me with an open mind. That all the medical crap that had followed me around in my notes for years wouldn’t be dredged up during this appointment but looking back now with 24 hours to calm down, I can see the decision that I didn’t have MG had been made long before I entered the consulting room.
Yesterday was a long, painful and emotional roller coaster of a day. There is so much to say but so little of it of any real use. The nerve conduction study was painful. The doctor that conducted it tested my hand, wrist, arm, neck and face. I am in a lot of pain from the tests done on my neck. I really wouldn’t have thought that they would have conducted such a test on someone who has only just recovered from a spontaneous CSF leak. Last night with my head throbbing I feared that the leak has started up again. I can only hope that it’s not the case.
The nerve conduction study checks to see if the nerves are carrying messages to the muscles. My test was done using an implement that looked about the size and shape of an old-fashioned electric razor. On the very end of it, it had two prongs, it felt very much like I imagine being poked by a cattle prod would. When the doctor was testing my hand it was jumping around so violently he actually had to hold my hand still. I knew as the test was being done by the way my muscles were twitching that yet again this test would be negative. When he tested the side of my neck, my head jerked uncontrollably from side to side, I also had a searing pain up the side of my face. My neck is very unstable due to EDS and this hasn’t helped one bit. I guess I will only know if any damage has been done over the coming days and weeks. I am hoping the pain I have at the base of my skull and in my neck improves. All I know at the moment is that painkillers aren’t touching it.
My face was also tested but he used a two small needles to do this. One needle was inserted close to my hairline in line with my eyebrow and the other was inserted midway between my eyebrow and my fringe (bangs for those in the USA). This wasn’t as painful but it was exhausting. Both sites bled quite a bit afterwards and where the needle was inserted at the side of my eye still hurts (24 hours later).
The test was all over within 20-30 minutes, although since speaking to people in the know a proper full sfemg looking for MG should take an hour or more. An sfemg / emg is only as good as the person performing it, MG is not common it is considered rare, so the operator also has to have a vast experience of performing this test on those with MG. It is not the gold standard test it is claimed to be and many neurologists around the world are starting to realise this.
After these tests I made my way down to the unit that I was meeting the neurologist in. I needed bloods to be done as the neuro wanted the basic MG blood tests carried out again. No doubt in a few weeks time I will learn that they are negative too. My veins were having none of it as usual, the healthcare assistant made three attempts and couldn’t get a drop despite being in a vein on all three occasions. It wasn’t that surprising to me, it was now gone 2pm and I hadn’t drunk anything since about 9.30am as I didn’t want to constantly need the toilet on the drive to the hospital.
It was decided that I would go in to see the neuro and someone else would do battle with my veins after. On the face of it the neuro seemed nice, polite etc but it became clear within minutes of the consultation starting that with the nerve conduction tests coming back negative that they wouldn’t be entertaining the idea of MG. There was no neurological exam, in all my years of being a professional sick person, I have never met a neurologist, student or otherwise who hasn’t performed a basic neurological examination. Clearly as a patient I wasn’t worth the effort.
Whenever I have seen neurologists in the past they have examined my eyes or the muscles around them. Usually they would get me to do a sustained upwards gaze which would give me ptosis. They would check also for Cogans lid twitch as you can see demonstrated in this video on YouTube https://www.youtube.com/watch?v=X8DNc-q12lY. Again that would have been positive for me. There is a whole host of other tests they could have done but chose not to because being positive on them would have left a bit of a conundrum as I am always positive on these. To not even bother with any sort of neurological examination made me feel worthless. It seems with a negative nerve conduction study the patient is simply wasting the neurologists time and effort.
I was told repeatedly with the nerve conduction study coming back normal, I couldn’t possibly have MG. It was suggested at one point I was in the grip of a hemiplegic migraine………..which was dismissed when I pointed out I hadn’t had a migraine in several years. In fact it had been so long since I have had a migraine that I have stopped taking the medication I took daily to prevent them. Obviously now I have said that out loud I am expecting one any day. I haven’t actually had a hemiplegic migraine since the age of 15, when I did have them my face was never involved, I didn’t have ptosis, I was basically paralysed down one side of my body when they happened. Other than that they had no clue what was causing the ptosis and apparently it doesn’t merit any further investigation. They will kindly review me every now and again when I am at the same hospital seeing my PoTs consultant.
Around half way through the appointment they let slip that they had been digging through my notes from ten years ago. They were the same ones that suggested somatization disorder as the root cause of all my problems including the ptosis. So now after being brave enough to stick my head above the parapet and mention MG again I have inadvertently put myself in danger of being written off with that psychological label again. I also found out that they worship at the altar of an idiot doctor I have seen at another hospital. No doubt they’ve had a great laugh at my expense, silly woman convincing herself she has MG. Although I keep telling them I don’t care what it is I just want a name and a treatment plan, it seems that they believe that I am just a patient hellbent on getting a rare diagnosis. Rather than understanding the very human desire of needing answers.
There was no explanation as to why mestinon / pyridostigmine resolves my ptosis, other than it increases everyone's muscle strength even if they don’t have MG. How true that is I don’t know. But even that contradicts the earlier statement that there was nothing wrong with my muscles. The fact that applying ice to my eye resolves the ptosis was also ignored, because to accept that would mean having to acknowledge that there is a problem at the neuromuscular junction. Anyone without a neuromuscular problem that has ptosis doesn’t get those results. I even took a freezer block with me to demonstrate but that was dismissed out of hand. There was no need they assured me.
I spent the whole time thinking that they just weren’t listening to anything that I said. Which in turn made the fight leave me, I am savvy enough with doctors now to realise when I am on a hiding to nothing. I just wanted to leave, get home, have a cup of tea and a cigarette. I had explained numerous times that I couldn’t see properly when I had ptosis out of the eye that didn’t have ptosis. The suggestion, which has to be one of the all time greats was and I am paraphrasing “that because it upset me the way I look when I have ptosis, to just use the mestinon when I leave the house”. Those of you who know me or follow this blog know I basically leave the house for medical appointments, that’s it. If I did as suggested I would never take it. It also ignores the fact it would leave me with very little sight for hours every day whilst alone for up to 12 hours a day whilst hubby works.
I asked why it was that my oxygen levels plummet why at times I struggle to breathe, why my legs refuse to work on occasion and was met with a shoulder shrug. It was suggested I speak to my gp and have more up to date breathing tests done. My gp isn’t going to do that when MG has been taken off the table. I have had them before and whilst they showed marked desaturation when I was up and moving around, I was accused by the doctor who organised the test (which was basically a pulse oximeter taped to my finger for 24 hours that recorded everything) that I was holding my breath. If I held my breath for as long as I had been accused of doing it, I would be a world champion free diver or dead. However I know now that due to PoTs pulse oximeters aren’t very accurate due to our circulatory issues, at the time of those tests I hadn’t been diagnosed with PoTs.
There is nothing quite like the kick in the teeth you get with a doctor that has already made their mind up about you before meeting them. I can only hope that my PoTs consultant goes on the patient he has met and not the neurologist's opinion of the patient. I really hope that this hasn’t put our working relationship in jeopardy.
The only upside of yesterday was that I bumped into my PoTs consultant, who came over and had a quick chat with me. He was taking the mickey out of the healthcare assistant that couldn’t get my veins to relinquish any blood. I told him off as he has never once tried to cannulate me. I have made student nurse and doctors cry due to my veins being such bastards. He did find that very funny. Thankfully the second person to attempt taking blood did hit the jackpot first time.
I am allowed to continue taking mestinon as “it makes me feel better” - yep completely ignoring the fact that it resolves my ptosis and I can see. Had I been able to just get straight to the car and be alone I would have sobbed and sobbed. They made me feel utterly worthless, not worthy of further investigation because there is nothing wrong with me. You heard it here first folks I’m bloody cured!!!
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Thankfully after a shitty day I came home to these beauties, two baby mugs with the puppies (although they will be 11 this year) names on. To go with their mums mug (Mollie) and their uncles mug (Travis).