Multiple Sclerosis (MS) Support Group

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Brain & Nervous System
/ Multiple Sclerosis (MS) Support Group

Bladder issues

jennilee68
jennilee68
Has anyone else here been diagnosed with IC (Interstitial Cystitis)? I was diagnosed today. The doc said they don't now the cause of it, but it is found in people with neurological problems. I will be seeing the urologist next week for a cytoscopy and then for six week I will be having bladder instillation treatments. Hopefully this will help. I have often had bladder pain, but thought I must be getting a UTI and then drank lots of water to try and flush it out. The pain would go away and I would think I just flushed it out of my system. The pain will go into remission and I will think I am fine. Then it will come back and be miserable for a few days. Since it is common with neurological problems, I wondered if anyone else had been diagnosed. I guess my bladder pain goes along with the rest of the muscle pain!
deleted_user
deleted_user
I have been told a long time ago I had Cystitis. To this day, I still get bladder infections, ext. It's crazy, because I have moths where I have to keep getting up during the night to go to the bathroom, even if I didn't drink anything before going to bed, then I have months where I sleep all night, and don't need to use the bathroom. I have the embarrassing problem of leaking when I sneeze or cough. I hate! I'm only 42, this shouldn't be happening at my age. :(
deleted_user
deleted_user
I had pain for years, as well as UTIs, that they could not figure out. Luckily it went away about 2 years ago and has not come back.

Ask if they are going to use Bacille Calmette Guerin (BCG) for the instillation. If they are it might not only help with the bladder issues but with the MS too. BCG is also what is in the TB vaccine given in most countries outside of the US and it has been shown in several studies to be very effective at reducing lesions and relapses for MS patients.

I have tried to get vaccinated in the states but my doctor has not been able to track down the vaccine other than what they use for instillation. Next time I go to the UK or Germany I am going to get it. Ironically the FDA says that BCG is a no-no for MS patients.
mjideas
mjideas
Hi.. Sorry you have to deal with IC. I have known 2 friends and a nurse with it, One friend was a stroke surviivor The other 2 had no neuro problems. My understanding is that it is an autoimmune disorder. Sometimes when you have one you can develop another.

They have much better treatment today than 18 yrs ago when my first friend got it, My other friend, newly diagnosed, has had very good success with med treatment and then following the recommended diet,

Hope it works well for you too!

Melanie