Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
Hi everyone
I just want to say a big thank you to everyone who messaged and sent me their wishes, I am sorry that I have been so quiet - "head in the sand" is pretty much the only way I know how to deal with things and waiting for the SFEMG has been no different!! I was dreading a negative result and the removal of my diagnosis....and it looks very much like that is the way things are going to go...
As you all know my Neuro had been certain of my diagnosis despite negative AChR and MuSK and an "unremarkable" NCS/EMG. Mestinon was a Godsend for 3/4 months and secured my "Clinical Diagnosis" but then a trip away with my daughters turned everything on its head and the Mestinon "Magic" waned. After upping my Mestinon dose my Neuro had assured me (and my Father) that my diagnosis was solid and that a negative SFEMG would not change my diagnosis/treatment. I then hit a bad exasperation (maybe a virus) and a letter to my GP seemed to indicate a less certain diagnosis and a complete backtrack on all of the assurances he had given me. My Father was sure the letter was just my Neuro covering himself as he also felt that at every appointment my Neuro had been very positive and assured of the diagnosis, he had indicated that negative tests are possible and that to proceed to steroids would need me to accept the risks in light of the fact that we had no evidence to back up the Clinical Diagnosis....I, on the other hand, was not so convinced!
So....I arrived for my SFEMG yesterday under the impression I was also having an appointment with my Neuro, unfortunately this was not the case. We were called into the room for the test and my Neuro came in to say that he was leaving for the day and he would review the results and be in touch. I felt bad that the Dr doing the test was stood waiting to start the test but I asked my Neuro if there was any validation of my symptoms in the consistent low levels of AChR antibody levels in my blood (My reading 10 years ago was 0.27 and last year was 0.12) he dismissed them and said that both were negative and though there is much debate on this there is an acceptable level allowed in the bloodstream hence the reference range. I then asked where I stand if the result is negative and he said this was the end of the road - my face was evidently drooping and if a SFEMG into a weak muscle was negative then there is nothing to find....which I do understand and accept but I felt a little mislead by previous discussions. I also understand, and to a degree, I am relieved that he would not trial steroids without any evidence to back up the diagnosis due to their risks but the fact that this now seems to put my diagnosis onto shaky ground is upsetting after everything it took to get one in the first place. He said that I can keep Mestinon as it does still help a little...but whether he will change his mind on that remains to be seen. I asked what options I had available to me and he said my best option would be Plastic Surgery (?!?!?) My Dad then asked what about the fatigue elements and he said that if I was his family member he would recommend an ME centre for a graded exercise program...but seemed reluctant about the ME part saying "for want of a better way to say it"?! Who knows!! In his defence he said that Dr doing the test was very good but that it would be his decision as to whether the result was positive or negative not the Dr doing it and so, in my Neuro's defence, I felt that he was saying that if there was anything that would back up the diagnosis he would accept it and not necessarily stick to the test guidelines of what is positive/negative?? But that may just be my interpretation!!
The test itself was ok, some parts were painful but manly it was just uncomfortable, I felt the Dr doing it was much better than the one who did my EMG - he tested along my right eyebrow and above it for an hour. I have to say that I felt he was really thorough and if nothing showed then I don't think I could dispute what he did (not that I know what I am looking for!!) I was listening to the strange noises from the machine trying to work out if the noisy or more silent readings were more significant....or neither and it all meant nothing! At the end he asked if I'd had botox, I said "no" but asked why and he said it can produce the same abnormalities MG and he'd had a patient the week before who had so he thought he would ask? I had to look upwards for all of it and felt very weak and shaky all over after - he noted that my eye had drooped more than it was before the test - which was expected I suppose! While my Neuro had been in the room before the test they had said that the Dr would need to analyse the result and I would not get the results there and then (and my Neuro also wanted the final say on it) but afterwards the Dr did say that they can usually tell straight away if it is "Dramatically Abnormal" and mine was not, but he needed to have a closer look and do the calculations. I fear he was trying to gently prepare me for a negative result...though my Dad thinks he must have found something due to the botox question! Who knows?!
I have to say....I really feel like this is it and this is the end of the road. It is safe to say that I will not be going down the Plastic Surgery route and I am somewhat relieved that it has not been suggested that this is all in my head as I don't think they recommend Plastic Surgery in those cases?! I may write a pleading letter to him to ask if he will allow me to have any new test that becomes available for MG due to the fact that he has been so convinced of the diagnosis and said there is nothing else it can possibly be!! But beyond that, it looks like I am dismissed and need to find a way to get on with it! The graded exercise is something I can do myself...though it makes no sense to me to be ME as I was very fit when I got ill exercising 3 times a week, working with 2 young daughters and leading an active life so its not like I had deconditioned into fatigue and activity/exercise intolerance?!
I wonder what my final Official diagnosis will be this time....I assume the Clinical MG will be removed and I will be left with no explanation to offer the people who wonder if I've had a stroke due to my facial droop! Who knows, maybe I am a mystery or maybe one day they will place all the pieces of the puzzle and I, like many I am sure, will finally have a confirmed diagnosis of some form/variant of MG. Until then, I will change my diet and maybe try some alternative therapies and try to do whatever I can to help myself.
I just want to say a HUGE thank you to each and every one of you, your posts have educated me and given me the strength to pursue things to this point and I am very grateful to you all for that. You are all such an inspiration and I will call in to see how you are all doing from time to time, but I fear this is no longer my place, I feel like a fraud and It doesn't feel right to contribute here without actually suffering from MG as you all are.
Wishing you all many Sparkle Days, Good Health and a World of Happiness...you all truly deserve it.
Thank You
Eve.x
(Ps...sorry for such a long post! I suppose the last one was always going to be longer than the rest!!)
I just want to say a big thank you to everyone who messaged and sent me their wishes, I am sorry that I have been so quiet - "head in the sand" is pretty much the only way I know how to deal with things and waiting for the SFEMG has been no different!! I was dreading a negative result and the removal of my diagnosis....and it looks very much like that is the way things are going to go...
As you all know my Neuro had been certain of my diagnosis despite negative AChR and MuSK and an "unremarkable" NCS/EMG. Mestinon was a Godsend for 3/4 months and secured my "Clinical Diagnosis" but then a trip away with my daughters turned everything on its head and the Mestinon "Magic" waned. After upping my Mestinon dose my Neuro had assured me (and my Father) that my diagnosis was solid and that a negative SFEMG would not change my diagnosis/treatment. I then hit a bad exasperation (maybe a virus) and a letter to my GP seemed to indicate a less certain diagnosis and a complete backtrack on all of the assurances he had given me. My Father was sure the letter was just my Neuro covering himself as he also felt that at every appointment my Neuro had been very positive and assured of the diagnosis, he had indicated that negative tests are possible and that to proceed to steroids would need me to accept the risks in light of the fact that we had no evidence to back up the Clinical Diagnosis....I, on the other hand, was not so convinced!
So....I arrived for my SFEMG yesterday under the impression I was also having an appointment with my Neuro, unfortunately this was not the case. We were called into the room for the test and my Neuro came in to say that he was leaving for the day and he would review the results and be in touch. I felt bad that the Dr doing the test was stood waiting to start the test but I asked my Neuro if there was any validation of my symptoms in the consistent low levels of AChR antibody levels in my blood (My reading 10 years ago was 0.27 and last year was 0.12) he dismissed them and said that both were negative and though there is much debate on this there is an acceptable level allowed in the bloodstream hence the reference range. I then asked where I stand if the result is negative and he said this was the end of the road - my face was evidently drooping and if a SFEMG into a weak muscle was negative then there is nothing to find....which I do understand and accept but I felt a little mislead by previous discussions. I also understand, and to a degree, I am relieved that he would not trial steroids without any evidence to back up the diagnosis due to their risks but the fact that this now seems to put my diagnosis onto shaky ground is upsetting after everything it took to get one in the first place. He said that I can keep Mestinon as it does still help a little...but whether he will change his mind on that remains to be seen. I asked what options I had available to me and he said my best option would be Plastic Surgery (?!?!?) My Dad then asked what about the fatigue elements and he said that if I was his family member he would recommend an ME centre for a graded exercise program...but seemed reluctant about the ME part saying "for want of a better way to say it"?! Who knows!! In his defence he said that Dr doing the test was very good but that it would be his decision as to whether the result was positive or negative not the Dr doing it and so, in my Neuro's defence, I felt that he was saying that if there was anything that would back up the diagnosis he would accept it and not necessarily stick to the test guidelines of what is positive/negative?? But that may just be my interpretation!!
The test itself was ok, some parts were painful but manly it was just uncomfortable, I felt the Dr doing it was much better than the one who did my EMG - he tested along my right eyebrow and above it for an hour. I have to say that I felt he was really thorough and if nothing showed then I don't think I could dispute what he did (not that I know what I am looking for!!) I was listening to the strange noises from the machine trying to work out if the noisy or more silent readings were more significant....or neither and it all meant nothing! At the end he asked if I'd had botox, I said "no" but asked why and he said it can produce the same abnormalities MG and he'd had a patient the week before who had so he thought he would ask? I had to look upwards for all of it and felt very weak and shaky all over after - he noted that my eye had drooped more than it was before the test - which was expected I suppose! While my Neuro had been in the room before the test they had said that the Dr would need to analyse the result and I would not get the results there and then (and my Neuro also wanted the final say on it) but afterwards the Dr did say that they can usually tell straight away if it is "Dramatically Abnormal" and mine was not, but he needed to have a closer look and do the calculations. I fear he was trying to gently prepare me for a negative result...though my Dad thinks he must have found something due to the botox question! Who knows?!
I have to say....I really feel like this is it and this is the end of the road. It is safe to say that I will not be going down the Plastic Surgery route and I am somewhat relieved that it has not been suggested that this is all in my head as I don't think they recommend Plastic Surgery in those cases?! I may write a pleading letter to him to ask if he will allow me to have any new test that becomes available for MG due to the fact that he has been so convinced of the diagnosis and said there is nothing else it can possibly be!! But beyond that, it looks like I am dismissed and need to find a way to get on with it! The graded exercise is something I can do myself...though it makes no sense to me to be ME as I was very fit when I got ill exercising 3 times a week, working with 2 young daughters and leading an active life so its not like I had deconditioned into fatigue and activity/exercise intolerance?!
I wonder what my final Official diagnosis will be this time....I assume the Clinical MG will be removed and I will be left with no explanation to offer the people who wonder if I've had a stroke due to my facial droop! Who knows, maybe I am a mystery or maybe one day they will place all the pieces of the puzzle and I, like many I am sure, will finally have a confirmed diagnosis of some form/variant of MG. Until then, I will change my diet and maybe try some alternative therapies and try to do whatever I can to help myself.
I just want to say a HUGE thank you to each and every one of you, your posts have educated me and given me the strength to pursue things to this point and I am very grateful to you all for that. You are all such an inspiration and I will call in to see how you are all doing from time to time, but I fear this is no longer my place, I feel like a fraud and It doesn't feel right to contribute here without actually suffering from MG as you all are.
Wishing you all many Sparkle Days, Good Health and a World of Happiness...you all truly deserve it.
Thank You
Eve.x
(Ps...sorry for such a long post! I suppose the last one was always going to be longer than the rest!!)
For many one of the longest journeys is the diagnostic one.
The most understanding people are usually right here, and quite often the most knowledgeable in many important areas.
How graded exercise is going to help facial weakness I would yet like to see! And anyone suggesting plastic surgery for a fluctuating condition either cant afford or doesnt know that they themselves may need a brain transplant - rather urgently!!!!!!!!!!
Hugs to you - many of them.....
It seems to me that you should begin to take things into your own hands, and begin to find a new neurologist. This disease is rare enough to be a mystery to most doctors. Diagnosis is difficult, but not all of us are antibody positive. PLEASE do the research. PLEASE ask people here to refer you to their neurologist if they are satisfied. If you're in southern California, I'd be happy to introduce you to mine (that is, if you have Kaiser).
Do NOT count on one opinion. I got rid of my first neurologist because he seemed unwilling to try different treatments to find out what works for me. That's the thing about this screwed-up disease, WE ALL PRESENT DIFFERENT STORIES/HISTORIES, and WE ALL RESPOND DIFFERENTLY TO TREATMENTS.
Please don't just give up and wait for someone else to figure this out. SEEK OUT THE INFO YOURSELF AND CHANGE DOCTORS IF NEEDED TO FINALLY GET HELP.
Good luck and stay on top of this group, asking question constantly.
I can fully understand your frustration, I have clearly positive blood test for MG, clearly positive response to Mestinon and a clearly positive SFEMG test AND still my Boston based specialist Neuro Dr Guidon is trying to tell me that I do not have MG....WHAT?? Dr Guidon comes with lots of accolades and a marching band from Mayo clinic research etc, yet she is trying to one by one discount each of my symptoms, blood tests and SFEMG muscle test as "something else" , well WHAT else could this be and BTW I don't care if you call it MG, what is going on.
Well this did not sit well with me or my local Neuro, so basically "we" fired (local neuro & myself) Dr guidon and Mass General neuromuscular group as a provider. It totally baffles me why there is this resistance to diagnose what is clearly MG. I can't figure it out, but am in the midst of exactly what you are dealing with....Trust me this is not goodbye or "I give up" this is simply the next step... There are many more to come.
Eve I would ask your neuro if well if its not MG tell me what it is. Clearly something is wrong, and I do not care what you call it, but I need to live this each and everyday and need you to do your job to figure this out.
Eve I am learning this is a tough one that will require you being proactive and involved with the various stages of processing the test results and agreement on the treatments.
Bottom line Eve you fall into the wonderful grey zone of diagnosis and as such you will need to be your own advocate. Don't feel ashamed at making your case in front of others and to able to tell your story and let them know of your expected treatments. Your right, this is hard and should not be hard but you have to be your own patient advocate.
I trusted Dr Guidon from the Mayo clinic and found out that she was unfortunately useless. When the doctor comes in and TELLS ME how I am doing with MG without examining me or even asking me how MG is affecting me, that is a huge RED FLAG. To be honest I am trying to figure out the hype that surrounds Dr Guidon, as far as I am concerned over the last 7 months its been a constant stream of RED FLAGS when it comes to working with her. Overall if you are working with her simply ask questions and proceed with caution.
Eve....I hate to say it, but you are simply, well not really simply, dealing with the Dx of MG and adding to that the NHS in England. Which if the powers to be here in the USA we will be doing the same. At this point Eve you need to continue to be your own advocate and pursue this with other specialist if you can. I have followed your posts for quite some time now and clearly can see you have MG, thats not even in question...thats a definite. For some reason that I cannot even begin to fathom, the medical establishment fights this....last time I checked they should be helping the patient, not the diagnostic dollar.
Hang in there Eve and do not consider this goodbye or anything like that, its simply the next step... Time for a plan of attack, a second opinion etc...
:-)
Eve we are all here for you, do not walk away....simply plan your next steps, this is your life and you need the support of the medical establishment, this will just take dealing with the process, the procedure...whatever you do, do not give up...
The very best of wishes Eve and support....
Joe
Search all of your symptoms because who knows, you might have Ocular MG instead of the "normal" MG.
Good luck with everything,
remember never give up!
-r
Bottom line I say this from my heart that I know what your feeling as have had to also deal with the frustration of not knowing. During all of this , the answer was right there but wasn't diagnosed mainly because " The Disease nobody Knows "
We are here to support you no matter what and I've said this numerous times since I found this awesome group that my only regret is I didn't find it back in 2000.
Hang in there and most of all ,Never give up , no no not ever.
All my best and expect to hear more from you soon..Cj
We are all here to support you and help you, you are not a fraud at all. What ever autoimmune process may be going on, you are suffering just like the rest of us and we offer you support as long as you may need us!
Steroids have their problems--I don't like them any more than anyone else, but it would sure help clarify the situation as to whether you are dealing with autoimmune myasthenia or congenital myasthenia appearing in adulthood. You need a diagnosis for yourself and your children and hopefully grandchildren :-) If steroids help and you do not want to continue taking them due to risks, you can stop; you can wait for better and more specific treatment. Those of us who have trouble reducing our dose have been on them for some time. Some of us have troubles because despite the treatment and outer improvement, the basic disease is still progressing. Don't give your neuro the excuse--"well, if she doesn't want to take steroids, it must not be that bad, and it doesn't really matter." It is that bad. You have had breathing problems already and you know MG can get nasty unpredictably. Acquiescing is NOT an option, at least not a good one.
The other thing, that occurs to me, is, we can all pull for spontaneous remission. Meanwhile, keep looking, and as of this post, you did not know whether he was going to let you down or not! Oh, Eve. hugs, b.
I found a paper from Dr Howard explaining EMG and SFEMG. Beth posted it on the "Links Group". Maybe it will help when you go over the results with your neuro.
Please don't leave us. You are part of our family and we are here for you and will continue to hold your hand.
Hugs
Sherry
Oh, friend. Please reconsider being here on the board. When you are discouraged, having support is important. Do you have people in your life that understand where you are emotionally with this journey of a diagnosis? I pray you do. If you do not, I would find someone to talk to about it. I have been where you are and I know the pain and disappointment of not having a clear diagnosis, drs. that don't do their due diligence or treat you with respect. I have cried many tears over the last 5 years as I've declined and I receieved lousy advice from MDS, "friends", and so on. I have had to take breaks on the journey to just be still and KNOW. (know that God knows what I am going through and that HE knows what is wrong. I had to surrender it to Him and let it go. Maybe I'd never have a dx) BUT, I can treat symptoms and issues as they come up even without a clearcut dx. If you go to the dr. with tachycardia it doesn't matter if they don't know why. They have to treat it. Know what I mean? So, maybe take a break to breathe for a bit, but please do not give up on yourself. There is a reason for your issues. They are REAL no matter what the drs. cannot figure out.
That's on them!! They are probably stumped and embaressed by their own inability to figure your case out.
For me, I had to get sicker before my dx became clearer. My MG progression also was a bit out of order. Finally, it was very apparent what it was to my neuro. Sometimes, we just have to wait. I know it's hard b/c you are suffering daily.
Don't be afraid to get another MD. Sometimes, that makes a world of difference. Never bash the old one to the new one. Drs. stick together. :)
Many hugs and prayers your way,
Carly
My early Neuros goofed too - and sent me down a twisting path - that took several years and 3 Neuros, before getting a correct diagnosis. There are many others here, with the same story, some occuring over incredible amounts of time.
Your current slate of doctors - is not helping you (no sh_ _, Sherlock). Is it difficult, under NHS - to find another Neuro?
It is my understanding: that a blood panel, showing any AChR antibodies at all - is diagnostic of MG. How can these doctors take away a diagnosis, that shows MG? Nutty.
You hang in there! And hang in - here! You need support, now more than ever. - Ross
Unfortunately, I don't see my GP allowing a "Third Opinion" Neuro#1 was the best my local hospital has to offer and Neuro#2 is an MG specialist at a University Hospital taking national referrals, running an MG clinic and who has previously held a brief research post into MG.....his parting opinion was that a SFEMG into a visibly weak muscle discounts MG and much as I believe that I do have some form of MG, I'm not sure that even I can argue with that...not with the current testing anyway!! Its so frustrating as he too was convinced I have MG and this one little test could throw it all out of the window!! So, unless my GP thinks I should see another consultant specialising in something other than Neurology (which seems unlikely given my symptoms point in that direction) then this looks like the end of the road. I thought I might write a letter to my Neuro asking if he will allow me to have any new tests that become available for MG as there will clearly be more antibody tests (if not other tests) in the future and I don't think it is fair to close the door when the clinical picture is so strong? I am not sure if he will agree but I feel I should maybe try??
Thanks again for all of your kind words and support - you don't know how much it means to me, especially now.....as the week progresses the realness of being left to live like this with no help/support gets more difficult to get my head around and the feeling of defeat is definitely growing!! So you are all, yet again, the only ones who really understand and your words really do help....I am so very grateful to you all :)
"Not MG" is not a diagnosis or differential and you are entitled to both. You also want to get a copy of all your testing which is reason to call his office, no maybe. :-) It may be that you will have to get that information eventually from your GP, but don't assume anything. Busy people have responsibilities, too. love, b.