Hello everyone - I know on the old site, we had a long discussion about mg and incontinence and I think the general concensus was that it is a problem that is worsened by mg.

Anyhoooo - I have been trying to do something about mine since I am having a lot of problems. It is difficult to treat with meds since the cause of the problem is "overactive bladder" and the treatment is a drug that slows down the muscles which is the last thing those of us with mg want to do!

I was referred to a specialist at Vanderbilt and she is recommending botox injections in the back of my bladder. She says it will last about 6 months but should definately help (if not stop) the incontinence.

Has anyone else had this done? Right now I am scheduled for Nov 17 at Vanderbilt to have this done. Any comments?

Don't quote me on this, but I seem to remember reading somewhere about Botox being dangerous for MG.

I have read that Botox is dangerous to MG too. I would definitely check this out with neuro before signing up. Pls. let us know what you find out.

Sue

Yes, you guys are correct. Have you heard of botulism toxin (BT)? Nasty little bacteria. It can bring on MG, bacteria-induced MG. It's much more complicated than that but you get the idea.

What BT does is to interfere with your ability to produce acetylcholine. So, yes, it can make MG worse. What Botox does is to basically "paralyze" the muscles so they won't work or cause wrinkles. Flaccid muscles don't wrinkle! Botox is NOT botulism toxin but it is derived from that. The makers of it swear that there is no live BT in there. There have been cases where the person getting it did get the infection.

Juanitad, I do understand that an overactive bladder is an awful thing to live with. The irony is that it may be MG causing it to be overactive. If you do Botox, what if it gets even worse? Have they fully looked at your lower back to make sure the problem isn't coming from there? It sounds like they have zeroed in on structural problems with the bladder itself.

Also, overactive bladder can be misdiagnosed or rather caused by some other condition (like MG). Just make sure they are clear on the cause before they go and try to "solve" the problem.

So, Botox not only "slows" down the muscles but stops them altogether. Very dangerous for people with MG. I think you may need to educate this doctor on that! Not all doctors understand MG or the drugs that can make it worse.

I hope you can come up with a solution that helps. Maybe get a 2nd opinion or two.

Annie

You may think me crazy but I realized that when my MG was in remission I didn't have a urination problem but now that I am back on mestinon I have to "go" all the time! I remember when I was first DXed with MG I had a "going" problem then too, I don't know if it is the MG or the mestinon, but I have noticed that when I take the mestinon I have to go and go and go.

Sorry, this is going to be a little gross.

Mestinon increases acetylcholine. Acetylcholine increases muscle strength. Muscle strength increases peristalsis, which can cause increase in the number of stools per day or an increase in the runny consistency of stools (both considered diarrhea).

The bladder muscles may be overactive from the properties of the drug. Not much is written up about that. But weak muscles or those with too much acetylcholine can cause the bladder to "let loose." Muscles get weaker when you sleep and you can end up "wetting the bed" too.

Mestinon does not affect all muscles in an equal way. Just like a pain med may make that slight headache better but may not make the raging pain in someone's back better. Mestinon could be helping with breathing, etc. but maybe it's making the bladder muscles a bit too better. Meaning, they are "overdosing" on the Mestinon. Does that makes sense?

Anyway, whatever is causing this for you, I hope you get some relief from it.

Annie

I discussed this with my neuro and internist and they both agreed it would be worth a try. I agree that the mestinon is probably the cause of the overactive bladder, but I think mg also affects the uretha (sp?). I didn't have any problems in this area until I started haveing wierd problems which turned out to be mg. I have had nothing but problems for the last 10 years. When the mg is under better control, the problem is not near as bad as it is when I have to take 120 of mestinon every 3 hours (which I am currently doing).

The doc at Vanderbilt is very familar with mg (which kinda surprised me) but she has a PHD in microbiology as well as being a specialist in urology. I'm going to send her an email and get an answer to the concerns about botox for mg patients and will post here once I have an answer.

FYI, I thought it was kinda neat how they decided which doc I should see at Vanderbilt. My local urologist sent a referral to the VB urology clinic and the docs sat around a table and reviewed all the referral files. The doc who was best suited to handle each case was assigned that particular case. My doc handles most of the immune compromised patients and from my conversation with her and her nurse, it is very apparent they are familiar with mg.

Patrick here,top of the morning to you,
I have been recently been diagnosed with MG.
I had found over the last six months I had had bladder problems made worse when I started taking mestinon every three hours for breathing difficulties.
I would rather breathe ,as I am now the best for thirty years and put up with the inconvience of bladder weakness.
I have while I am waiting on a uroligist taken to wearing a very smart slimline men's incontinenance throwaway underwear.
No more washing for my wife of underwear.
When the bladder overspills when full,no wet trousers .
I is certainly different but the concerns tend ot beall in your mind as noone knows what you are wearing and you are protected.
It has also led to sexual dysfuntion at the moment ,a little embarrasssing.
Thank god it is the internet I am saying this on.
I am afraid poor Penis has all but disappeared inside and hence when using the bathroom I sit down now like a women.
It is embarrassing for us men but better to breathe and live