my neuro appointment/Part 2

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rose

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Thanks for all the positive responses to my previous thread :)

(Beth, I'd forgotten you'd tried the Mestinon)

I think maybe the part about my neuro being almost positive that I don't have MG has gotten lost in the shuffle here. She said the repetitive stim NCV most likely would have had abnormalities if I had MG, and that my elevated Ck also points away from it. (and of course the normal antibodies, no eye involvement and no thymoma.) All doctors felt that with the amount of prednisone I'd been on, if it were MG, I would have shown some sort of improvement when taking it, especially those weeks where I was on 60mg a day.

What I wonder is if the mestinon is ever helpful with another condition, and that is what my neuro is actually looking for. I think this drug works at the neuromuscular junction, isn't this also where the mitochondria is?

Does anyone know about other uses for the drug? An internet search has not turned up anything for me.

So far, other than the increased twitching, all I've noticed from the mestinon is that my speech is worse.
 
Rose, this is what I found on use:"Symptomatic treatment of myasthenia gravis; antagonism of nondepolarizing neuromuscular blockers
Military use: Pretreatment for Soman nerve gas exposure."
Happy Holiday, Erica
 
Rose,

Did they check the posibility of Lambert-Eaton myasthenic syndrome.

The single fiber nuro I saw yesterday said the single fiber yeilds a positive result for Lambert but it would not be picked up in the standard EMG.

Some symptoms are: Symptoms of Lambert-Eaton myasthenic syndrome begin with weakness and some achiness and tenderness in the thigh and pelvic muscles. The upper arms may also exhibit some weakness. Due to the weak thigh and upper arm muscles, the patient's walk may have a waddling appearance, and it may be difficult for the patient to lift his or her arms above the head. Exercise may initially improve the weakness, but the weakness may become more pronounced as exercise continues. Eyelids may droop (ptosis). Many patients notice uncomfortably dry eyes, mouth, and skin. Patients may develop difficulty chewing, swallowing, and/or speaking, as well as constipation, sudden drops in blood pressure when rising from lying down to sitting or standing, abnormalities of sweating, and erectile problems in men.

Good news it's treatable. Bad news is that 2/3 rds of all cases preceed cancer by 2 years or so...
 
Rose I have the latest textbook used by doctors and med. students on neuromuscular disorders. It has a huge section on MG so I will try to wade through it keeping your history in mind and see if I discover anything. Also will see if they mention Mestinon being used for anything else.
Laurel
 
Rose, some PALS on Patients Like Me are using it with ALS. I don't know if it has any benefits or not. I found a great burst of energy with it, but the neuro said it gives "everybody" energy, which makes no sense. (Why isn't everybody taking it?)

I don't know of any other conditions it may treat, but that doesn't mean there aren't any. Maybe PM Wright?
 
Thank you, you all are the best!

Erica, other than the MG part, I have no idea what that means, but I can certainly try to read about it.... (I'm thinking we should work antagonism of nondepolarizing neuromuscular blockers into the script of the next Forum Follies episode!)

Buddy, that is interesting they mention dry eye and mouth (which I have) and of course the bulbar weakness. The rest does not particularly fit, I will read up about it though. The neuro who performed the last one I had, as well as my primary neurologist, both said the test cannot distinguish between ALS and MG, It is not used to diagnose ALS though. Because of this, it would follow that the neuro who you were with would not bring ALS into the conversation.

Laurel, you are a dear. It helps that you have the medical background, maybe you can make more sense of it than I could. All I understood from my neuro was it worked at the neuromuscular junction, which is also where the SFEMG tests at. I plan to send Wright a message. He'd written me relatively recently saying he was in the middle of building a house, so I'm thinking Thanksgiving week is not the best of times to get a hold of him.

Beth, it hasn't given me any bursts yet. I find it interesting that some PALS take it. So far I'm not liking it at all, but it is very cool to be trying something to treat my symptoms again, you never know, right?
 
Some experiences from the UK forum:

"I have been taking Mestion for 3 years.

According to my neuro the mestinon increases the signals sent to the muscles and so give increased muscle strength. I have noticed increased twitching when taking it. I have experimented with periods without the drug, but noticed a decrease in strength. The dose for me is 60mg 3 times a day. "


"Having read about it on various forums, I asked my neuro for it. He obliged. Took first pill, then felt sick. I had not read the possible side effects at that time. By day 3 I felt sick all the time, had terrible runs, twitching was unbearable and saliva was like a waterfall. So I stpped it. I am gratefull to my neuro for letting me try it and I had high hopes for it, but for me it just did not work." (this one was left by Jennie/Jennifer)

Dani
 
Rose, Mestinon is one of several drugs that can be used to treat Lambert. I did a search for symptoms of lambert, and they vary from website to website. Dry eyes and mouth pop up in a few. The symptoms on some of these sites vary quite a bit. It's fairly rare. It's similar to MG, but different in how the symptoms present. Atrophy and sensory symptoms were also listed in websites as a symptoms.

I have a friend who's friend had some strange symptoms a few years back. Trouble breathing, weakness, for several months etc.... He did the standard tests, and during the CT scan they found cancer in his kidney. They removed the cancer and he then soon afterword was 100% symptom free and is to this day... The Dr said that the cancer would not have explained for the breathing/weakness issues. However, from reading these websites, Lamberts can cause this and removal of the cancer can reverse the symptoms. It's rare, and I suppose that some Dr's just don't come across this unless you are a specialized neurologist.

Supposedly 1/2 the cases are cancer driven and symptoms start up to 3 years before the cancer is detected. The other 1/2 are of unknown cause. The prognosis is that it progresses very slowly, can halt progression, and can respond to therapy. Apparantly if they suspect Lampert, the next step would be to do a thorough check for any possible cancer and to catch and cure it early. In my friends friend case, the symptoms actually probably saved his life.

Hope you are feeling better.
 
Dani,

How interesting there is such a variety of opinions on how the Mestinon made them feel. I was sad to read the quote from Jennie, it is hard that she has passed! I'm not liking Mestinon at all yet. My speech is worse, I'm twitching like crazy, and no extra energy that I can tell. That's okay though, if nothing else, it will satisfy those doctor's who ask if I've tried it, and how it affected me. Like the one poster you quoted, I'm presently taking 60mg 3X day.

Buddy,

I did look at several sites on Lambert-Eaton after reading your posts. I honestly don't think it applies to me. One of the consistent descriptions of presentation is reduced or absent reflexes and mine are hyper or at least brisk except at some places in my legs. It also states that bulbar presentation has quite a low percentage, I think most sites said 5%. My first problems were bulbar and respiratory. I only started with limb involvement more recently, and its my ankle (distal) which is weaker than my upper legs, hips etc.

We're having our American Thanksgiving today, and even if I can't eat my favorite cranberry salad with the chopped walnuts, I can still manage the mashed pototatoes and sweet potato pie ~ laced with a good bit of bourbon :) So, regardless of what is wrong with me, this year I have my younger son home, and its the first time in several years that he's not been stationed in either Afghanistan or Iraq for the holidays, so, its all good for me today.
 
Rose so glad to hear your son is home for the holidays,hope you had a great day,alot of your symptoms sound like Larry's & he just has the sfemg his neuro told him at first she thought MG but the sfemg didn't show it so know he is going to have it done on his face & a reg Emg done on other body parts.so we shall see what develops.still no diagnosed after 3yrs & many tests.GOD BLESS .

Sharon
 
Re: my neuro appointment/Part 2/update

Well, we've officially given up on the Mestinon. My neurologist feels it would be helpful for me to write up my experience with it, in order for this information to be included in my chart.

At this time there are no plans for more diagnostics, she wants me to continue attending the ALS clinic, for management of my care.
 
Rose, how do you feel about that? I mean, do you feel stuck in limbo, or still resigned it is ALS?
 
Marianne,

I'm not sure what I feel. I'm not upset about stopping the Mestinon, as it was not helping.

The EMG results of my bulbar area are not suspect, (however, they've also not been repeated) so, that definitely keeps the option of ALS in the picture.

The last EMG of my limbs (in October of this year) was only done one or two places on my right arm and right leg. When it was still normal, that part of the testing was stopped, and the other neuro came in and did the SFEMG. Most of the results for the single fiber were bad, but my neuro said a small part of it was almost normal.

At the time the test was being done, I BEGGED the neuro doing it, to try it on a leg or arm, but he said those places were very difficult to do that type of testing on, and that my forehead area was sufficient. I asked my neuro about this, and she agreed that they were limited as to where it could be done, but I know by reading on the web that it can be performed on the forearm, and I think I read one study where it was done on the leg. .. So, I guess they don't feel enough more could be learned by doing the SFEMG elsewhere, I just don't get why that is.

If it is not treatable, (and it has not responded to anything so far) maybe it doesn't matter what its called. But, knowing would also let us understand if it absolutely will continue to progress or if it could stop, and that is a biggie.

I do have a question for those on the forum who have a definite diagnosis of bulbar onset ALS, or have had their ALS progress to the bulbar area from the limbs: What is the rate of your speech? This is part of what my neuro feels is unusual for me, in that my speech was slower (she feels) this time last year than it is now. I am aware that sometimes it seems it takes me longer to say things than others, but it has never been extremely slow. I remember having a phone conversation with Brenda, and not only was her rate of speech slower, but it was a different type of slow than mine can be. Its hard to explain, but the individual words were drawn out as she spoke them, whereas when I talk slow, its more the pacing of the words. (does that make any sense?)
 
Makes sense to me. Sounds different from my brother too. He was bulbar. The words were harder for him to form so his words were more drawn out not just the pacing. Hope that you get a definate diagnosis so at least you have an idea of where you're headed. At least you stopped the Mestinon. Sounded like it was worse than without.
 
Rose,
"It is what it is" - (OK, that expression is so overdone but it seems to fit here) NOW, channeling Bill Clinton, "It depends on what the meaning of IS is"! (some dark humor, no offense)
 
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