This Is MS Multiple Sclerosis Community: Knowledge & Support

Is it just coincidence but since Interstitial Cystitis (IC or chronic bladder pain NOT related to a UTI or infection of any sort) is common in people with autoimmune diseases, does anyone here w/MS also have IC? If so, have you found anything, anything at all to help deal with the pain? If so, could you please share your experience as I'm desperate. If I thought MS pain was bad - which it is, horrendous in fact - I'm finding IC to be so much worse, or maybe it's worse because it's in combination with the MS pain. (?)

IC can go into remission as can MS, and though it seems like the pain mechanism may be similar to that of MS (nerve related), and different in every person, I'm just wondering if anyone here w/MS has IC and if any treatments from drugs to PT to stress reduction have helped.

Thank you so much for any feedback - very confused right now. Waiting for my urologist to come up w/a plan but I'm sure this is related to the MS as yet another "complication" of autoimmune disease.

I am unconventional in my thinking – I think excess insulin is greatly involved in MS… and some of the other "autoimmune" diseases as well.

Insulin is very irritating and cause the pain in the bladder of interstitial cystitis. I understand that a urine insulin test is available; I urge you to request of your urologist that this test be conducted. OR ask for a fasting blood insulin test (desirable result is under 3 UU/ML).

If there is an insulin-interstitial cystitis connection, diet (as http://www.TerryWahls.org) might help that problem as it seems to help many with MS.

Not good news - finally talked to my urologist and he does think it's interstitial cystitis which he said can go hand in hand with MS.

If anyone else has IC and MS, I'd really like to hear how you're coping with the unbearable pain. I do know stress triggers it & that sometimes PT can help relieve the symptoms as well. But one has to find a PT qualified in working w/both MS patients & IC patients hard to find.

Thanks again - I don't wish this on anyone but really hate to think of being alone with this, so if the experience is too personal to share on the forum, I'd be grateful if someone could PM me.

s.

Related? I saw an item on TV today that said the drug Actos has been linked to bladder cancer. Actos (pioglitazone) is a drug prescribed for diabetes; it reduces blood sugar by increasing the amount of insulin produced by the pancreas.

More insulin = damage to the bladder? There seems to be some evidence to that effect. The FDA has added a warning to the drug.

It's unrelated Lyndacarol. All tests have been done to rule out bladder cancer and there is no insulin problem in my case. Thanks for your thoughts. But I am looking for anyone with MS and interstitial cystitis which has nothing to do with Actos. Could be no one in this forum is experiencing both diseases - one is enough, that is for certain. IC is idiopathic however they do know it occurs in 80% of cases in women and many of those have immune systems that are compromised. I want to stick to what's scientific at this point, and at this point no link exists between blood sugar and IC according to the literature.

Hi Selkie,
I have ms and ic. There is an anti-spasmodic med you can get from your urologist. There is more than one (I think) so ask. Kegel excercises can help also. They are tough at first if you are not used to it, but keep doing them! I was lucky (?) in one way because I don't have "leaks", instead I have to whistle and relax muscles to "go". In IC you have no chemical barrier protecting your bladder and sometimes scars form on the bladder lining, making it rigid. There is a simple procedure called a "Hydrodistension" which breaks the scars and restores some elasticity to the bladder wall. Yes, it hurts, but was so worth it later. I have had 3 in 10 years.
You probably have the sensation of having to go frequently and pain. So--the best advice--say goodbye to coffee, lemonade or anything with citric acid in it, and tea (because of tannins)--all of these irritate the bladder in IC patients badly. Learn to love Flavored Herbal Teas instead, cause caffeine hurts like a mo-fo! IC can go into remission on it's own. Mine has come and gone over about 12 years. Hope this helps.

My sis does not have MS but she does have IC. She rarely gets a flare anymore-she's had it for 25 years or so. But when she does- she says amitriptyline (spelling?) offers her great relief.

Thanks, Muskan & Selmahope. I'm taking all that into consideration. My urologist did prescribe pyridium (sp?) (you can get it OTC or by script which is cheaper usually if you have drug coverage). That's the anti-spasmodic. He's hoping that's going to take care of it.

Selmahope, the anti-depressant I'd read about (it's another name for Elavil). But at this point my urologist wants to blame the entire episode on MS - he said the uretha is a muscle fired by nerves; both muscles & nerves react in an MS flare and although this type of reaction is not the typical MS flare, he believes because of the location of my pain and from his examination, it's more logical to assume MS flare than I.C. I'm not convinced, but I understand he doesn't want to tag me with another incurable disease as in his words "MS is enough to deal with".

He wrote me a script for the anti-spasmodic and right now that's all he's recommending and he says he doesn't care if I take it (the anti-spasmodic) for the rest of my life (but isn't the need for an anti-spasmodic indefinitely the definitition of I.C.?) Though I do find I need to take it with food or it can upset my stomach. It's all pretty confusing, but I've been under tremendous stress & we all know what stress + MS produces : flare. So he's going to see me next month for re-evaluation. I hope he's right & this is an MS flare and not I.C.

Muskan, I'm glad you've learned ways to keep the IC under control - at first it really did scare me until I read about the remissions people do experience. Thanks for your advice and if the doctor does change his dx, I will try diet, exercise, first and see how that works. Right now, I am going to just take one day at a time and hope this is an MS flare that will also eventually go into remission.

Please check out this site and see if have the symptoms and how you do on the self home tests

http://www.candidasupport.org/related_diseases.html

I have been dx 2yrs w ms. Iv'e has symptoms of ic in the past ie burning etc. with no infection, but since having ms I have had a horrible event of bladder pain, no urgency just constant burning pain from bladder region down. Was checked by urologist. No infection, pelvic exam good, had ct scan done showing multiple stones in kidneys, but not blocking anything. The only thing that helped was taking pyridium for two weeks before it finally went away. I feel it was from ms, because it lasted so long and didn't have the urgency.