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...
Kimberly brought up a good question. Why do we drop things when it is not from weakness? and Ross answered it for me, we have neuropathy, too. For the two of us, dropping things preceded other more obvious manifestations of MG, or were present from the beginning. Kerry posted about his problems with lung function and the contribution that neuropathy makes.
So I have two questions: is this an unrecognized (by the medical profession) usual symptom of MG? As in do we all have some loss of sensation in our hands and feet that contribute to stumbling and dropping things?
The other question is, does this improve along with other improvement with treatment?
We know we can have other autoimmune illnesses, but it would be interesting to know if we all have some degree of sensory loss, and the extent of that needs to be reported to our physicians, not accepted as part of our weakness. Neurologists know how to examine for neuropathy, but unless there is a specific complaint, that exam tends to be cursory. My sensory loss was picked up on exam 35 years ago and missed every exam until my last.
So I have two questions: is this an unrecognized (by the medical profession) usual symptom of MG? As in do we all have some loss of sensation in our hands and feet that contribute to stumbling and dropping things?
The other question is, does this improve along with other improvement with treatment?
We know we can have other autoimmune illnesses, but it would be interesting to know if we all have some degree of sensory loss, and the extent of that needs to be reported to our physicians, not accepted as part of our weakness. Neurologists know how to examine for neuropathy, but unless there is a specific complaint, that exam tends to be cursory. My sensory loss was picked up on exam 35 years ago and missed every exam until my last.
Another question,why did I have a rapid onset of symptoms when many of you seem to have mild/slow onset of symptoms???
Crazy disease!!!
Robin
I don't think any thing is universal in MG, but it appears that this kind of problem is associated with MG in many cases and is not necessarily another autoimmune disease like MS which we all worry about having, especially those of us who are seronegative. It may be something we all should be bringing up with our neurologists however, because our treatment evidently affects this manifestation of our disease as well. This is a small sample of all the people that have MG, but a large percentage of those actively posting (including other people who have posted these kind of problems since I have been on site).
Since we have many of the same kinds of treatment questions and response, Kimberly, I'll send you a response by message as soon as I take my meds and finish my breakfast! b.
MG makes one drop items because of weakness.
Neuropathy makes on drop items because of sensory issues: numbness, tingling, loss of sensation, over-sensation, inability to feel with hands, etc.
--Kerry
We got on the subject because weakness did NOT seem to be the only reason for dropping things and some of us had documented neuropathy, too, as you said in your post. This made us wonder whether this is a common accompaniment of MG or a separate issue, suggesting another autoimmune disease. I have structural neck problems and had considered those the reason for mine, but began to wonder about that when other people had problems as well, especially since my MRIs did not show impingement on the nerves.
b.
Peace,
TJ
What does your neuro say about you being on plaquinil? I know it can make our mg symptoms worse.
~sherry
I did ask about the Plaquinil originally and he said to leave it for now. I am due to call with an update soon and I think I will ask to go off of it. Most of my aches and pains seem to be better with Mestinon and better when my MG symptoms are better. I don't know if I am just happier when MG symptoms are less and I can move more so other pains don't seem as bad. Or if somehow the other symptoms are linked to the MG. Or if the Mestinon is somehow helping the othe symptoms. So hard to tell.
Yesterday was a worse MG day and my other aches and pains were worse as well. Weird how it all seems to be linked together. Other than being tired and a little sore from cleaning today seems to be a better day.
Kimber
MG itself, can cause us to drop items: due to muscle weakness.
Neuropathy, can cause us to drop items: due to sensory problems.
(Peripheral neuropathy: is another phrase, often used to describe the condition.)
I have been diagnosed with peripheral neuropathy. To a finer point? My Neuro has diagnosed my dropsies: as being caused, by a condition, - called: Small-Fiber-Nerve-Damage (SFND).
The diagnosis was made, by nerve-biopsies. Two - from each arm & leg. My Neuro said: SFND is often not revealed, in a biopsy. My SFND was obvious.
(Large-Fiber-Nerve-Damage, which is obviously related? Is often more easily detected, by biopsy.) (The biopsies are no big deal, healing quickly and easily.)
(I say that? But, remember: my nerves were all damaged!!)
SFND occurs when the fine, very-small nerve-endings - in your legs and arms - are damaged.
Especially, when the damage? Is to those nerves - that control the fine-motor skills - of your fingers and hands, toes and feet.
Like many neurological problems? The exact cause of SFND is not completely understood. (A high percentage of people with general neuropathy, and SFND - are diabetic.)
SFND - is also seen - in patients with neuromuscular diseases.
That's Us, Folks.
And like bweeds said? A high-percentage of us, here?
Posting to the topic boards?
We report similar problems with dropsies.
And most - of what is reported?
To me? It sounds like problems with sensory loss, in our fingers and hands.
Peripheral Neuropathy - and SFND.
It's meaningful to me? That, at least - in part? This topic originated - with a topic board - about having a sense of humor, about our daily lives with MG.
(Humor can also be used - to instruct.) (Words borrowed, from an ancient philosopher. Yoda - I think!)
I take gabapentin, to alleviate the nerve-pain, associated with PN and SFND. (Brand name: Neurontin.)
Originally started at 300mg, multiple doses daily. Tapered down to 100mg, 3 to 4 x daily.
A nice side-benefit to gabapentin: it is also an anti-convulsant drug, which helps with my cramp-fasciculation-syndrome. (But baclofen & lorazepam - are my main CFS meds.)
My health is in a slow, general decline. I can't say that I ever see the SFND - relaxing its grip very much.
There is one noticeable item, though: Rest.
When I am well-rested? ALL - my auto-immune conditions, kinda back off, a little bit.
But? Can't remember the last time, I felt well-rested. One day maybe, back in the Spring?
Another question - has anyone had a lot of problems with meds> I have been through mestinon, prednisone, cellcept, imuran, ivig, & plasma pheresis with serious side effects to all. I am currently taking prednisone andf want desperately to get off. Any ideas or someone with similiar circumstance?
I have problems with medications, too, and although it might not help you, I have found that doctors prescribe drugs at doses that I can only tolerate, if at all, if I start low. For example, I started on Mestinon at 30 mg three times a day and sometimes divided that in half and took it more often. Now (after nine months) I can take 60 mg every four hours with few problems. I always take these things with food before and after and lots of water so that they go all the way down. I have no experience with most of the drugs listed, my 10 mg of prednisone seems to be dong OK. Wish I had more suggestions, but I think we have drug intolerance for the same reason we have MG. b.
As far as taking meds my doc started me on Mestinon (generic) 1/4 tab once day, then twice a day then 3 times day for several days. Slowly worked me up to 1/2 pill 3 times a day. I tolerated it really well so we have been able to work out dosages via phone.
Sounds like You may want to suggest to your doc if the meds allow it that he try and start you slowly. My doc also said always with food because the Mestinon can really mess with your stomach and digestive track. Not having the right foods or liquids to help may also be another factor for you. I know in the past it has made a difference for me.
I wish you the best of luck in finding the correct solution for you!
Kimber