Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS.


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Old 10-21-2012, 12:19 PM #1
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Default Is this MG? Undiagnosed!

Hello
I am looking for some advice on chronic undiagnosed symptoms which I think may possibly be MG. In 2007 I got very bad muscle fatigue which made my legs feel heavy and made walking difficult. I was given a diagnosis of ME following a positive test for Epstein Barr virus. I had to stop working and gradually improved over 18 months although never fully regained by previous activity levels.
At the end of 2009 I got a virus with high fever and injured my lower back. I collapsed and all my limbs went very weak so I could not get up, I just kept on falling back down. My speech was very slurred and my balance and coordination was off. What followed was a series of what I can only describe as crisis in which my speech was so slurred I was not intelligible and breathing became very short and sporadic, as if I needed to remind myself on every breath. Three years on the crises have abated but the speech, balance/coordination and walking difficulties continue and seriously restrict my daily life.
I've had MRI brain/cerebral angiogram/lumbar puncture and visual evoked responses all fine, and bloods came back clear. I've had a thorough cardiovascular check up for blood pressure and heart rate all fine. More recently my GP has discovered I cannot sustain upward eye movement or rapid blinking (I just pass out in both instances). He did the antibody test but it came back negative.
I've lost my ability to drive since my head drops down unexpectedly and sometimes I can't support it at all. I get twitchy muscles that are driving me beserk and I can't stand up for more than a few minutes without collapsing. I find I can start things off okay but it wears down really quickly to a halt, and if I try to push it I just fall over, get up, fall over, get up, fall over....
I'm sorry for the long messages but I would really appreciate your advice and sometimes I feel like I'm going crazy because I don't have any explanation for what this is! I'm 30 year old female.
All the best and many thanks for reading x
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Old 10-21-2012, 12:44 PM #2
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Hi, and welcome. I'm so sorry you've been through so much and are still undiagnosed. Not having a diagnosis is a huge burden emotionally.

A lot of us here are seronegative (that means we tested negative for the MG antibody) but have a diagnosis of MG anyway. Some of us (like me) got that diagnosis based on a Single Fiber EMG, and some are diagnosed based solely on symptoms, or based on other tests (like a tensilon test).

I've seen various numbers for how many people with MG are seronegative, but it could be as much as 20%. You need a single fiber EMG (SFEMG), which is a test that studies the electrical impulses in your muscles. It's a more accurate test for MG than the blood tests are. Not every neurologist knows how to do this test. You need a neuro who specializes in neuromuscular diseases. You can get a recommendation from your local chapter of the Muscular Dystrophy Association (MG isn't a form of muscular dystrophy, but it's a "covered disease" of the MDA).

There are also other antibodies besides the acetylcholine receptor antibodies that can cause MG (or related diseases). The most common is the MuSK antibody. There are blood tests for it. You should also be tested for Lambert-Eaton Myasthenic Syndrome (LEMS).

I hope you can get to a neurologist who is willing and able to do these tests. In my opinion (I'm just a patient, but I've read a lot) any patient with symptoms like yours who tests negative for the AChR antibodies should have a SFEMG and be tested for LEMS and the MuSK antibodies.

Many neurologists with a patient like you would also prescribe a trial of a drug called Mestinon (generic: pyridostigmine bromide) that is used to treat MG symptoms. It's a very fast-acting drug, and safe. If it helps you dramatically, that's pretty good evidence that you have MG.

Please feel free to ask questions here. Many of us went a long time without a diagnosis, so we know what you're going through and would love to be able to help in some way.

Abby
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Old 10-22-2012, 02:46 AM #3
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Quote:
Originally Posted by wild_cat View Post
Hello
I find I can start things off okay but it wears down really quickly to a halt,
That sounds like MG!

Hello wild_cat

I also came here via an M.E & EBV route.

My myasthenic weakness on the other hand affected the upper body mostly – at my worst peak I had the upper body of a 90 year old and lower body of a 20 year old all at the same time!

Good luck with getting the tests that Abby describes - asap

And look forward to hear how things are going,

Anacrusis
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Old 10-22-2012, 07:39 AM #4
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Thanks so much for your advice and support. It means a lot to be able to speak about this! I feel very confused about finally getting towards a diagnosis - part denial, part happiness. Do you have any advice on exercise in the meantime? I've been doing yoga six days a week but now it is becoming very had to sustain. I find I must constantly keep my head bowed and speech becomes very slurred, sometimes I just fall over! Is it good to try to keep this up or am I doing ore harm than good?!? I know it's difficult to say without a clear diagnosis but any guidance would be very much appreciated!
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Old 10-22-2012, 08:03 AM #5
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I personally would stop the exercise until I had a diagnosis.
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Old 10-22-2012, 09:24 AM #6
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Quote:
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I've been doing yoga six days a week but now it is becoming very had to sustain. I find I must constantly keep my head bowed and speech becomes very slurred, sometimes I just fall over! Is it good to try to keep this up or am I doing ore harm than good?!?
I'm so sorry to say this, but I think you are doing something dangerous. If you exercise until your symptoms are this severe, you are pushing your MG very hard (assuming it's MG). MG pushes back. There is evidence that with MG, if you wear out one group of muscles, other groups of muscles can get weak, too. If the weakness affects your breathing muscles, that's life-threatening. If your swallowing muscles get weak, you can choke.

Abby
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Old 10-22-2012, 10:37 AM #7
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Is it good to try to keep this up or am I doing ore harm than good?!? I know it's difficult to say without a clear diagnosis but any guidance would be very much appreciated!
Hello again,

I will just share 3 experiences with you:

1) I joined an old ladies physiotherapy water aerobics class and went approximately once a week for 2 years. I pushed and pushed not knowing at that time that the warm water was exacerbating my weakness or that my will power wasn´t going to be enough to force my muscles out of extinction. I had decided that when my fitness level had reached theirs then I would stop the class. It never did. In fact one sweet lady with a zimmer frame asked me why I could not keep up with the rest of the class and I didn´t know what to say......

2) I was swimming very gentle breaststroke one day a couple of years ago and congratulating myself on how far I had come since the days of CFS. And suddenly out of nowhere all the muscles in the upper body decided to quit and I was quite close to drowning. I´m normally an excellent swimmer with unusual stamina. I also got a muscle tear whilst struggling in the water.

3) I was quite disappointed when one of the best physiotherapists in town said he no longer could do anything for me. At that time he was having me try and lift empty plastic coke bottles out from my sides since I couldn´t manage any weights. And it just got worse each time I visited him. What he said was this: ´Exercise is not going to help you, in fact, I don´t know what is wrong with you, but I think right now it might do you more harm than good to exercise at all. I would prefer you to go and see a neurologist first´.

Exercise is necessary once you know what you are dealing with and it becomes stable. wild_cat - If I were a doctor I think I would have repeated to you what my physio said to me Hope that you find some of this info useful.

Anacrusis

Last edited by Anacrusis; 10-22-2012 at 11:03 AM.
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Old 10-22-2012, 11:40 AM #8
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Well, thank you for your advice, it makes a lot of sense. After three years not knowing what's wrong and struggling to get the dr to take me seriously, I have often felt it was something I had done wrong, my fault in some way, and so I've been searching to make it better myself by exercise, good diet, sleeping the right hours, etc etc. and even though it's still here despite trying all sort of exclusion diets, supplements and alternative therapies I still want to tell myself there must be something I can do to make it better!
Anacrusis, I had the same experience as you. Some friends of mine, who I think didn't believe I was making enough 'effort' encouraged me to go swimming. I had a feeling it would turn out bad and the same thing happened with me, I fainted in the pool and had to be carried out, otherwise I would have drowned.
So, all is easier said than done in practice, but I will give it the best go!
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Old 10-22-2012, 05:37 PM #9
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wild_cat! I may cry! I could have written these words myself:

"I have often felt it was something I had done wrong, my fault in some way, and so I've been searching to make it better myself by exercise, good diet, sleeping the right hours, etc etc. and even though it's still here despite trying all sort of exclusion diets, supplements and alternative therapies I still want to tell myself there must be something I can do to make it better!"

And try as I may to quit, (diagnosis in hand) I find myself spending too much of my precious energy researching something, someway I can control this. Or turn this train around.

I've just recently given up on the alternative treatment. (I think.) The cost for supplements was literally controlling our income. And did it help? Yes, I think so. Did it help enough to warrant the cost? No. If there had been an end in sight. Or if the good days had outweighed the bad significantly...

I have: gone gluten free
done a juice fast
gone off all refined sugar
All seemed to help, for awhile. I felt really good on all fruit and veggie juice all the time, albeit I was really hungry, alot. I'm thinking about trying that out again to see if I get the same results. But I just haven't felt good enough to start yet. Maybe next week.

All this to say I get ya! Sorry to be so long-winded.
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Old 10-22-2012, 07:57 PM #10
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What seems to have helped me is increasing my mestinon dosage. I am going to ask my neurologist if he can write even more. I find that overlapping my 60 mg every 4 hour dosages with 30 mg at 2 hours helps a lot. I only do this when I work and need the extra boost.

Exercising or even existing without it doesn't work.
Don't push yourself until you know what is going on. It is a pain and it is potentially dangerous. It is not your fault.
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