This Is MS Multiple Sclerosis Community: Knowledge & Support

I was (still am, when I run out of what I'm about to tell you about) experiencing horrific bladder problems. Would often wake up in wetness, which may have been one of the reasons my last girlfriend left me. But a very smart neurologist I went to when I lived in LA prescribed me DDAVP. Read about it here:

http://www.nlm.nih.gov/medlineplus/drug ... 82876.html

Of all the drugs I've taken for symptomatic relief of a long list of MS related bullshit, this has been the only true silver bullet. And yet in my constant trolling of MS message boards, I never see anyone mentioning this stuff. It's administered as a simple nasal spray, too. Probably won't help with retention, and may exacerbate it (though I also often have that problem, and always piss sitting down like a woman, pressing hands upon my bladder), but I encourage anyone suffering from frequency/incontinence to give this a whirl.

It has even allowed me to limp into bars, parties, etc. where I know I might consume a lot of liquids without constantly worrying if there will be a line for the restroom or if I'll have to hobble outside and relieve myself behind a tree.

I'm also considering having botox injections in the bladder. My new neurologist at UCSF says it's very effective. Has anyone tried this?

Good luck. Stay dry.

Not too sure on its effects on the bladder, but for a "silver bullet" against symptoms, have you tried 4-AP?

Seeker,

I did research Desmopressin with my neurologist and urologist. They both understand how much of a lifestyle altering thing neurogenic bladder is and both agreed that this is a very effective drug. However, they also did not want to prescribe it to me at this time. Their rationale is that this synthetic hormone will be something they may put me on when I slow down more. They said that as active as I am (I still work a fairly demanding job and exercise as hard as I can daily) it would screw up my electrolytes and levels of other "stuff" that I don't remember. He said if I took this drug I would probably have to take other drugs in combo. with it to help regulate those issues and would also have to monitor myself when exercising and basically said if I could deal with my occasional nighttime incontinence that I should wait until it's a major problem.

Any incontinence is such a major blow to your self esteem and feeling of well being, but if I don't drink after 9:00pm, I don't pee myself at night. So they left me on 2mg of Valium 3X/day and we are going to see where that goes. If you notice is says that fluid intake has to be monitored and probably reduced. That aggravates my chronic constipation and I just don't want to try until I really lose control. I really appreciate the feedback though. Up until about 2 months ago I had never heard of this stuff.

My next fun Dr. feedback was that they want me to take the blood test for Devic's. The Mayo clinic is the only place in the world that does it, but they are going to draw blood at my next appt. in Oct. All of my symptoms are from the waist down with the exception of my eyes and the "main" initial symptom list for Devic's is:

Optic Neuritis
Bladder issues
Bowel issues
Gait issues

That's me. They had thought that's what I have since all my lesions had been on my spine, but then I had a couple pop up in my head (7). They originally thought that may rule me out of Devic's, but further research shows that there still can be some lesion load in the brain with it also. I really hope it's not since that can be some nasty shit, but I would also like to know. It is just confusing to my doc. how all my symptoms seem to be from the waist down. I hope it comes back negative.

I hope so too, Loob, whoever would have thought that having MS would be the preferred option?

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Dom

Tell me about it. Devic's is a really tricky one. On the one hand you have about 10-15% of Devic's patients who have just one bout and that's it for the rest of your life. However, the other 85% or so have horrible, debilitating relapses and many "go to 10 quickly" on the EDSS since it is spinal and can take away involuntary functions like respiration. I'm still thinking I don't have it though since I have had this crap for six years and have never really had the mother relapse. Although I suppose I could have it and that's why every symptom I got on my first relapse has stuck with me, i.e. no remission for me. So they are on the fence on whether I have Devic's or I am SP. Neither option is worth a &*$%, but not knowing screws me up worse. The other disheartening thing about possible Devic's is the Tovaxin trial I'm in. MS has been called a T-cell disease whill Devic's has been called a B-cell disease. I don't know what B-cell means, but I do know Tovaxin regulates MRTC's, not B-cells.

Isn't this shit fun??......not.

Hi Lew,
IF Tovaxin ultimately proves to be what it's cracked up to be, it will answer a lot of things.

You and I have already talked about the possibility of a simple test for MS possibly being created from the Tovaxin procedure. That is something which has long been needed.

I was reading about Devic's today at lunch and researchers are in disagreement whether it's a variation of MS or something completely separate. Going with the odds, it's most likely a variation of MS.

You've shown to have produced the necessary mrtc's to make the Tovaxin vaccine. If you really do have Devic's, your mrtc's would seem to show that Devic's is a variation of MS....or maybe your mrtc's are proof that you don't have Devic's??

The above facts really are proof positive of something but at this point, good luck even finding a neurologist whose heard of Tovaxin, not to mention one who knows what to make of that information.

At any rate, I think the situation is better than you think.

Bob

Thanks for the reply Bob,

I hadn't thought of the angle that by virtue of the fact that I qualified with the MRTC criteria, that could possibly rule out Devic's. I have also read about the different arguments about Devic's. Apparently in Asia they have what they call OSMS (Optico-Spinal Multiple Sclerosis) and it's much more common there than here. I'm with you, I think it's more of a variant of MS than a variant of transverse myelitis, but God knows why I would feel that way (you know with my vast medical background and all!).

Hi Lew,
Gosh, don't worry about your lack of a medical background..........unless you've seen evidence that a medical background better prepares one to understand the workings of MS. Personally, when I turn full circle I see EVERYONE scratching their heads in wonder.

I'm not sure what's going on but I've read that MS was more aggressive and occular when it first began it's rise in incidence in, what at that time were considered the "developed" countries.

In reading research reports it now seems that there is evidence showing that MS is more aggressive and occular in populations which might be considered newer to the "developed" scene. Blacks in America, American Indians, the residents of Sardinia Italy, Isfahan Iran and most obviously Japan.

Within the span of our lives some of us remember seeing Japan recover from the financial devastation of WWII to it's great wealth of recent years and beginning in the early 1960's the general population of Japan started having the means and desire to emulate the lifestyle of the rest of the developed world.

I don't think there's any doubt that "something" about being and becoming a "developed" population gives rise to the increased incidence of MS. Of course, I personally think it's the loss of "evolutionary normal conditions" which happens along the way and in that regard you could consider Japan among the newest recruit to the developed world and it somehow seems that maybe MS is more aggressive and optically involved when a population is first introduced to it?

Bob

okay there everyone i am at work right now reading all these cracking up..ya are killing me here..love the comments ..its always good to know that i will be able to say or ask just about anything and get answers for the problem with a little sense of humor involved...lol...thanks everyone

chris

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waiting for answers