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...

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bweeds 11/13/2011

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.

Ceegee22 11/13/2011

Good point Beth. If taking a poll, I think many of us that have MG have the same issues with this. I am one of them and after reading Ross's discussion and what some of you have written I see a connection. I still think the doctors would learn so much from reading the discussions on websites like this. I tried to encourage my doctor to read it, but I guess they just don't have the time. They need to get outside the box and open their minds to what is really going on with their patients on a daily basis. A great learning tool for them if they would just enter in.

deleted_user 11/13/2011

I have noticed that after a round of IVIG I was dropping things less and not stumbling but now that it has been some time I find myself dropping things again-maybe it has to with being more tired and not paying as much attention to things....
deb

Kimber71 11/13/2011

You're right Beth. Ross and I have been having this conversation also. I would like to know how many of us have this neuropathy style dropsies along with the weakness derived dropsies. How many still have the dropsies all though their other symptoms are apparently controlled?

I can definitely tell the difference between not getting a good grip and when something is just gone out of my hands before I realize what happened. I am noticing when I have a good amount of medication in me and most of my symptoms seem to be controlled.

Kimber

bweeds 11/13/2011

deb,
When we have to pay attention, i.e. watch as well as feel, then something is wrong and in your case IVIG helps.
Kimberly,
Do these symptoms get better with your treatment or not, since you are just on mestinon according to your profile? That would be interesting, too.
And is there anyone out there who has never had this kind of problem?

deleted_user 11/13/2011

I find myself dropping things when I am due/overdue for mestinon.
Pat

newmugg 11/13/2011

Last year, the neurologist said I had some neuropathy in my right foot. Have not been retested so I don't know if has progressed. I find myself tripping more when I am due for plasmapheresis.
I have an appointment on Tuesday and will ask some questions.
~sherry

deleted_user 11/13/2011

I originally-years ago was diagnosed with carpal Tunnel. I insisted that it was not so. After 7 doctors saying the same thing, I had 4 operations on both hands(wrists). After each operation, the nerve conduction test came back worse. Finally they admitted it was something else....................peripheral neuropathy. Reasons were unknown. Finally, I found a doctor who knew about MG. I take generic Mestinon and some of the feeling has come back into my hands but i still drop things and think I am holding them. This happens mostly when it is close to taking another pill.

deleted_user 11/13/2011

I drop things all of the time. Several glasses and plates are gone never to be seen or heard from again...lol. it is very frustrating. Now my left pinky finger and along that side has become numb don't know what is causing this. Oh well such is life and not much I can do about it!

bweeds 11/13/2011

It's interesting that Pat and Bambee have neuropathy that responds to Mestinon alone.

So the question remains, does anyone have MG that does NOT have some associated neuropathy? b.

cgreens 11/14/2011

I do not, and have not had problems dropping things, as in falling out of my hands that I have noticed. I can recognize times when my limbs are more relaxed etc, which could be considered symptomatic of neuropathy, I suppose. Perhaps mild neuropathy, or is it MG? Even though I had tested positive for MG, I still went on with other possibiIities, like Neuropathy. I asked my Neuro about this many months ago, and she asked if I had any tingling or weird sensations. I do/did not, and so I haven't thought of it lately. I have mentioned it here before also, as others have questioned symptoms.

In the past:

I have dropped or known I was going to drop an item if I did not set it down due to my arms going to give out from a weakness/paralyses involvement from MG, or so I thought. Since I cannot make any claims of dropping anything recently, I guess I will venture to say that the symptoms have improved with my treatment of MG. To say that everyone has some type of neuropathy if they have "generalised" MG(not ocular), would probably not be accurate in my opinion. I'm not sure though... Symptoms of it? Sure...why not?

Look at this involving testing for neuropathy and treatment(look familiar?):

http://www.athenadiagnostics.com/content/diagnostic-ed/neurology/peripheral-neuropathy

In addition,

Maybe it can be generally associated with other conditions, including MG, like RA has some of the same symptoms as well, and maybe some of us are in early stages of that or ???

Fibromyalgia they talk about dropping things too.

http://www.dailystrength.org/c/Fibromyalgia/forum/8188180-drop-things-all-time

And MS:

http://www.dailystrength.org/c/Multiple_Sclerosis_MS/forum/16601-dropping-things

Really, dropping things can be relative to many issues including stress etc etc etc etc:

http://www.google.com/search?q=dropping+things+anxiety&ie=utf-8&oe=utf-8&aq=t&rls=org.mozilla:en-US:official&client=firefox-a#sclient=psy-ab&hl=en&client=firefox-a&hs=EXV&rls=org.mozilla:en-US%3Aofficial&source=hp&q=dropping+things+anxiety+or+disorders&pbx=1&oq=dropping+things+anxiety+or+disorders&aq=f&aqi=&aql=&gs_sm=e&gs_upl=23733l27059l0l27466l13l12l0l0l0l0l230l2058l1.7.4l12l0&bav=on.2,or.r_gc.r_pw.,cf.osb&fp=a686e28799f6b6d7&biw=1440&bih=783

cgreens 11/14/2011

Kimber71 11/14/2011

I have recently increased my Mestinon (generic is all that I am on for MG). I was diagnosed RA in my hands about 8 months ago. I started taking Plaquinil and my neuro did not feel the need to take me off. I still had multiple flares before starting Mestinon and (although it has been only a month) no flares since then. My complaints to my rheumatologist about muscle fatigue and clumsiness is part of what clued her in to refer me to a neuro.

I am now up to 1 tablet every 3 hours. It works well when my activity level is almost nothing. When I add (what I consider) mild to moderate activity I see my symptoms returning before the 3 hour mark. A lot like running out of gas. Also today I was told I was mumbling on the phone about 45 minutes into my first dose. Though the general fatigue and most of the weakness was better I still had the dropsies and stagger. Probably because I was trying clean and do things around the house.

I have yet to see a day free of symptoms. I wish I had the ability to have a low activity level and perfect the medication dose then add activity slowly but I guess we all know it's not quite that easy. I really don't want to add steroids if I don't have to but I'm not sure how much further my neuro will go on Mestinon alone. I guess only time will tell.

Kimber

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