MS & Interstitial Cystitis

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MS & Interstitial Cystitis

Postby selkie » Tue Oct 11, 2011 4:32 pm

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.
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Re: MS & Interstitial Cystitis

Postby lyndacarol » Tue Oct 11, 2011 6:03 pm

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.
Last edited by lyndacarol on Tue Mar 26, 2013 5:55 pm, edited 2 times in total.
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Re: MS & Interstitial Cystitis

Postby selkie » Wed Oct 12, 2011 12:22 pm

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.
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Re: MS & Interstitial Cystitis

Postby lyndacarol » Wed Oct 12, 2011 5:19 pm

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.
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Re: MS & Interstitial Cystitis

Postby selkie » Thu Oct 13, 2011 11:43 am

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.
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Re: MS & Interstitial Cystitis

Postby Muskan » Tue Oct 18, 2011 6:28 am

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.
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Re: MS & Interstitial Cystitis

Postby Selmahope » Tue Oct 18, 2011 8:00 am

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.
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Re: MS & Interstitial Cystitis

Postby selkie » Wed Oct 19, 2011 3:36 pm

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.
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Re: MS & Interstitial Cystitis

Postby civickiller » Fri Oct 21, 2011 6:07 pm

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
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Re: MS & Interstitial Cystitis

Postby deb3 » Mon Jan 02, 2012 7:59 am

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.
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Re: MS & Interstitial Cystitis

Postby sandieby » Sat Jul 06, 2013 9:19 pm

hi - i was dx with ms 1/84 and ic sometime in '99 or '00. i have been having the Worst bladder issues since march. urologist feels it is ic, gp doc thinks it is ms. i think i just stumbled on what triggered the problem. becuz of dry mouth i have been using halls vit c drops. i didn't realize until li saw on fb that those drops have a warning for people with ms using them. i REALLY love the grapefruit ones and didn't even think about them being vit c and would suck on them all day. my bladder was going crazy......peeing every 10min, not making it to the bathroom on time, burning, strong smell, etc...............phewwwww - i'm relived that i found the cause but i don't want anyone else to find out the hard way - remember - vit c is NOT our friend
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Re: MS & Interstitial Cystitis

Postby cisfit4life » Fri Jul 12, 2013 11:40 pm

Hello everyone I am new on this forum. I was diagnosed with MS in 2008 and was just diagnosed with IC one week ago. Presently the medications my urologist has me on aren't really helping. I've been taking them since the end of May. In the future I will be receiving Uracyst treatments at the hospital here but they are booked up until april 2014 when my treatments are set for. I have been reading up alot online on diet for IC. I've been following it eating mainly the bladder friendly foods. I still get the pain but it has lessened a bit. I work full time so its hard at times but I tough through it. Not much I can do except wait for my treatments which are suppose to help relieve the pain. Any thoughts or suggestions welcomed. My IC was most likely due to chronic UTI's for the past 2 years and bad periods. I know longer get periods per se for the last year after having an ablation last March. I know that there is no cure for IC but to try to control pain through diet and treatments when they eventually start. Glad to have others to talk to about this. Would love to hear from others going through same thing. Have a good night all..
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Re: MS & Interstitial Cystitis

Postby eric593 » Sat Jul 13, 2013 9:20 pm

Sandieby - why isn't Vitamin C our friend?? I take 1000 mg/day and I also have sucked on many a Halls lozenge in my many years with MS. Since infections raise the risk of relapse, isn't it important to keep the body as healthy as possible?
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Re: MS & Interstitial Cystitis

Postby cisfit4life » Sun Jul 14, 2013 9:10 am

I also wasn't aware about vit c or b complex. Do you know what damage it can do? In my case from oct 2012 til now I get sick alot have only had maybe one month where I am not sick. Also my urologist told me that you are allowed decaf coffee or tea..very confusing. Plus fruit wise was told I can have pears, blueberries or melons with the exception of canteloup..all suggestions appreciated. Thanks
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Re: MS & Interstitial Cystitis

Postby sandieby » Thu Jul 18, 2013 9:36 pm

ok - think about it : vit c = ascorbic acid.....doesn't sound innocent,does it? but i did find some info that talks about it and if you read the hall's vit c drop bag it actually says for people with ms NOT to use them
"Citrus foods, which are high in vitamin C, may irritate your interstitial cystitis symptoms, according to MayoClinic.com. Carbonated soft drinks can often increase symptoms for patients with interstitial cystitis, as can foods and drinks that contain caffeine, including coffee, tea and chocolate.

Read more: http://www.livestrong.com/article/52331 ... z2ZSNq9mDM

Buffered Vitamin C
Vitamin C supplements can be problematic for those with interstitial cystitis. However, you may be able to tolerate a form of vitamin C called calcium ascorbate, which is buffered with calcium carbonate, according to Larrian Gillespie, M.D., author of the book "You Don't Have to Live with Cystitis." This form of vitamin C is more absorbable than ascorbic acid and helps replace the vitamin C you lose through urine. Calcium ascorbate also promotes storage of potassium ascorbate, another form of vitamin C, in your cells. Calcium ascorbate may ease some interstitial cystitis symptoms by reducing levels of histamine, an inflammatory molecule, Gillespie says.
Read more: http://www.livestrong.com/article/52331 ... z2ZSPt3W5r"

i am soooooooo frustrated with my docs - they seem to think i have ms bladder and no infection. BUT where does ms bladder say that it causes pain - back/front/thighs, swelling of the abdomen, feeling like your insides are gonna end up falling to the floor, peeing every 10min with burning. i SWEAR if they would give me an antibiotic it will clear it up but no body will prescribe them. i truly believe we have a low grade infection that regular tests won't pick up.........anybody else confirm that? prayers to all
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