I sure need help with the tummy-bowel aspects of mestinon. The first year I did pretty good but not now. If I have Lortab in me for my pain on worse days it is better. But if pain is down or the dose hits where pain med is worn off watch out. I literally have exploded all over not making it to the potty (sorry about that truth). I dont have the strength to clean up such messes nor do I want the awful cramping pain that goes with it. Also I dont want to use my Lortab to counter the diareah.

Someone suggested Imodium but I dont think that calms the nerves that are making my bowels do this. I do not think Imodium is a good choice for me. Does anyone have things they use succesfully?

Annie59

Hi Annie,

I have the same problem. I've always used probanthine tablets, when I'm bad i take one 3 times a day. Its not a cure but it certainly helped me out when I'm bad.

ProBanthine is no longer commonly available in US. A common anticholinergic would be Bentyl here or hyoscyamine (Levsin)

Seems counter productive to me to take an anticholinergic drug to deal with cholinergic side effects from a cholinergic drug.

But then I don't know that much about MG to be able to comment further than that.

Imodium is related more to the opiate family but it also has a mild anticholinergic action (dry mouth, blurred vision etc).

Annie, You really need a doctor to advise you on this. Why? Because certain anti-diarrheals can cause a buildup of meds in your body. It sounds like you are on more than one medication and, again, you need a doctor and a pharmacist to advise you on that.

Ditto to what Mrs. D. has said.

Please contact your doctor.

Annie

I have a suggestion for something that has worked for me.

Since I started taking Vitamin B-12 (Methyl B-12 form) in larger amounts (1 to 3 mg per day) my diarrhea has been much less. In recent weeks when I increased to taking 3 mg of B-12 daily I had a regular bowel movement (sorry if this is gross). This is my first regular bowel movement in over a year! I felt like celebrating. I haven't had time to learn about B-12 to see if others have this effect from taking B-12. I have been keeping records and I am positive it is the B-12 that is helping me, since every day I take 3 mg I have a huge improvement and I don't have to plan my day around being near a toilet. Hooray!

Does anyone else notice this effect of vitamin B-12?

Oh, I originally tried the regular B-12 and it doesn't seem to be helpful, at least I didn't notice any improvements, it is specifically the sublingual METHYL B-12 that helps. I also see a huge improvement with my MG, I don't have as many of those days where I have to spend the day resting in bed.

Sorry you guys have diarrhea, it is not fun at all.

This symptom of diarrhea, was illustrated on an episode of Mystery Diagnosis on Discovery.

The afflicted woman had diarrhea for YEARS... went to over 10 doctors who could not find anything wrong with her. She eventually started losing her eyesight, then her balance.

She finally consulted a physician she saw on another episode of the program, and that woman doctor did the Romberg's test on her in the office (it is a balance test that you close your eyes and try to remain standing). When the patient failed this simple test, they did a B12 serum level that was in the 280's (which according to most labs in US is STILL considered NORMAL!)

Treatment with B12 cured this suffering patient finally.
So yes, it happens. Current medical education (which doctors don't get or ignore) suggest treatment for anyone under a serum level of 400.

Annie,

My husband has many of the same issues w/ the Mestinon. I wouldn't recommend Immodium - he took it once when we were going to be somewhere that wasn't conducive to quick trips to the bathroom. It worked, but later that night he had SEVERE cramps, so bad I almost took him to the ER. He's had pretty good relief using probiotics but check w/ your neuro & get the good ones - not the stuff they sell at Wal-mart!

Good luck - Alison

Sometimes 1/2 of a tablet of Imodium (1mg) works for many situations. I think some people may become constipated on the suggested doses.

I have a congenital GI defect that sometimes makes me very ill...and I have found 1/2 Imodium is plenty for me!

It is also a good idea to try 1/2 tablet if you are 50 or over.
Older patients are more sensitive to drugs.

My diarrhea started with taking Mestinon...maybe I am B12 deficient as well, I haven't been tested recently. All I know is the B12 helps me greatly and I am going to continue taking it.

Thanks Mrs. D.

I really can't offer any advice on MG, I have'nt been diagnosed yet but I can speak first hand about low B12 levels.

I was admitted to the hospital this past June with extreme body weakness and severe muscle spasms.

After a gamit of lab studies, an EEG, CT Scan, and an MRI they detected a severely low B12 level . If your B12 level is to low it can cause very serious neurological and autonomic nervous system problems. A low B12 level can cause permanent damage to the myelin sheath covering your nerves. The treatment is simple. You take an oral supplement and a series of B12 injections for the rest of your life.

Diarrhea, hair loss, muscle spasms, loss of appetite and weakness are just a few of the side effects of a low B12 level.

Some of the symptoms go away quickly, some take longer, some may never go away. It all depends on how long your level was below normal. Everyone responds differently to the treatment.

While I have had some improvement with spasms, the overall body weakness remains a problem for me. As a result the neurologist I saw in the hospital ordered the acetylcholine antibody tests during my very first post hospital follow up. They came back negative, I've also had an EMG which was normal as well. He requested approval for a MuSK antibody test last month. My insurance company denied it due to a lack of clinical evidence for the test. I still have all the symptoms of generalized MG. I see my PCP again next week and my neuro again next month. I am unsure of what the next plan of attack will be.

Sorry this ended up so long, hope it clears up the B12 thing a bit.

Rachel