Doctors blame all symptoms on MS - how do we know?

[selkie]

I'm SP since 2002 and posted recently that I thought I'd also developed interstitial cystitis.

The urologist has since changed his mind and is now saying it's an MS related flare. He "kind of" makes sense because as he points out my symptoms aren't exactly like interstitial cystitis, however I.C. can vary from patient to patient.

Basically what's happening is extreme burning like a UTI (I've had several tests & cultures - no infection or bacteria), cramping in and around my bladder and upper thighs - the symptoms are episodic and only partially relieved by Detrol and Pyridium (both drugs used to treat bladder pain). I've had a thorough exam of my bladder, no cancer, stones, or bleeding. Diet does not affect the pain one way or the other and my urologist only wants me to continue increasing my water intake and told me there's no need to change diet - I agree - I've already tried giving up several foods with no benefit to the pain in the bladder.

So, has anyone else with MS had burning that was NOT a UTI? And has anyone heard of an MS flare attacking the bladder and surrounding area, spreading to the abdomen & upper thighs? I've got an appt w/my neuro after Christmas & will run all this by him. I'm sort of in agreement w/my urologist that it's NOT interstitial cystitis, but I've never had an MS flare affect my bladder.

Has anyone else?

(And no this is not candida, I'm very familiar with candida and this is not that. Has anyone has had MS attack their bladder but not have an infection, i.e. UTI? - And does MS flares affect the bladder - as my urologist said "MS is a weird disease and will attack the body's weakest point".)

Thanks, selkie

[oreo]

Yes, MS can affect your bladder, BUT ...
A few years ago I was having bladder problems. The uro's initial thought was that it was my MS acting up. While I was in the middle of all sorts of diagnostic tests I just happened to have my regularly scheduled annual check-up with my neuro. So of course I mentioned this to him. He looked at me and said "It's NOT your MS." How he could jump to that conclusion was more than a little baffling to me so I did the unthinkable. I asked him to justify his position. His answer was one of the few clear, concise and meaningful answers I've ever received from him. He said that MS rarely attacks the bladder alone - it is almost always in conjunction with a second concurrent MS attack. As I had no other active MS issues, in his opinion it could no be the MS.
When I passed this gem of wisdom on to my uro, he said that he had never heard this before but would remember it for future cases. As the test results rolled in, the final diagnosis was - enlarged prostate - nothing to do with MS.
I notice that you do mention TWO things, the bladder and the abdomen & upper thighs.
Feel free to jump to your own conclusions.

[selkie]

Thank you so much oreo! Your neuro's response is one I intend to bring to both my own neurologist & urologist and see what kind of response I get.

You're right there are two issues, and the fact I'm having pain in my upper legs & abdomen makes my uro insist the MS is attacking the entire area. He said if I was a "normal" person with no MS he'd dx me as interstitial cystitis, but I'm going to tell him what you said and say that in spite of the MS, there is still the possibility the bladder pain is I.C. or could be MS but I don't feel we know enough at the moment to "jump".

Thank you - I'm sorry for your own bladder troubles and hope you're better. I do thank you for sharing.

selkie

p.s. - and it is interesting my uro is *still* prescribing the I.C. drugs even tho insisting it's my MS... hmmm...

[Alicia]

I had some of your symptoms. I had severe burning symptoms comparable to a UTI. I had to get up every 2 hours all night to use bathroom. NO urinary tract infection, no internal cystitis, not cancer. They ended up telling me my pain was due to bladder spasms. Medication for overactive bladder didn't do that much either. My MS doctor said that this pain was not due to MS. Eventually most of the pain subsided on its own.

Alicia

[selkie]

Hi Alicia,

I think my urologist is expecting the same thing as your docs did - the symptoms to go away on their own. But it's going on 3 months now and the pain is worse, not better. I'll see my neuro the 20th and see if he thinks it's an MS flare or rule it out as your neuro did. It's infuriating. I do believe these are bladder issues as my uro told me if I was a "normal" person he'd dx me with interstitial cystitis. It's like going in there with a compound fracture and them saying, well if you were a "normal" person, I'd say your leg is broken, but since you have MS we won't treat it and see if it gets better on it's own.

From everything I've read at I.C. websites, I fit the bill even w/the pain in my legs and surrounding area of my bladder. Yet my uro won't give me pain medication even though the national I.C. & other medical websites say anything from tylenol #3 to morphine to tramadol is used to treat the pain. Even if it is an MS flare, these same drugs should be made available to us rather than allow extreme suffering. I'm fed up with doctors.

selkie