This Is MS Multiple Sclerosis Knowledge & Support Community

Hello friends.

Been reading this board for years, this is my first post. I've been so in the closet for the seven years I've been dealing with this nonsense (I'm now 32) I couldn't even bring myself to post on a message board using a fake name. When friends (except for the closest of them) ask me why I'm limping so badly, I tell them I have a bad back. Ridiculous.

Anyway, to the point of my post. Is anyone taking testosterone gel for their MS? I'm sure many of you have read the results from the small, 10 patient research study conducted at UCLA and published last month in May's Archives of Neurology that determined 100mg of Androgel given daily for one year to male RR patients showed improved mental functioning as well as more toned muscle mass and the other effects normally associated with testosterone therapy. I got my doctor to prescribe it to me, and I smeared my first 8 pumps onto my shoulders in the parking lot of the pharmacy this morning. Wondering if anyone else is trying this and if you've noticed any effects. If nothing else, I'm hoping it will boost my energy and restore my former lady killer demeanor.

I'm also taking:

-Tysabri (was on placebo + 3 real doses during initial trial before it got pulled, since being re-approved for 7 doses, sorry to report I feel I've gone downhill in the space of those seven months and am considering switching to something else. These legs are getting bad...)
-Was on Avonex for 6 years, and combination of Avonex and Copaxone for the year or so Tysabri was off the market)
-Baclofen, 20mg 3xday (spasticity)
-Enablex, 15mg 1xday (bladder)
-Cymbalta, 20mg 2xday (depression)
-Aminopyridine-4, 5MG 2xday (walking, made through compounding pharmacy until Fampridine-SR is approved)
-Provigil 200mg 1xday, more as needed (fatigue)
-Demopressin Acetate nasal solution, 2-3 puffs/day (bladder, nocturia)

Lots of Herbs & Spices, plus yoga

Does any of this expensive poison work? I can't tell anymore. But I will say this: Demopressin Acetate nasal solution is a MIRACLE drug. I was having serious problems with frequency of urination and incontinence, especially at night while sleeping. This stuff solves the problem 95% of the time. If you have bladder issues, I highly recommend having your neurologist write a prescription for some of this stuff. I don't recall ever seeing it talked about here or on any other MS forum, so I hope if nothing else comes of this very long rookie post, this tidbit will help someone as much as it did me.

Thanks to all of you for posting and keeping me informed over the years.

Seeker

Hi Seeker,
My wife has the MS and it's very mild so I don't have no experience in the things you mention but I wanted to welcome you to actually posting after all this time.

I couldn't even bring myself to post on a message board using a fake name.

So "Seeker" is your real name??

Bob

I've been on 15 g of AndroGel per day for about two years. It certainly has not stopped the progression of my disease, and I don't really suffer from cognitive issues. I have PPMS, and my testosterone levels have tested low for at least three or four years now. The AndroGel has pushed them back up into the normal range, but as I said I have not seen any effect on my MS symptoms.

I did run out of AndroGel a few weeks ago, and had to skip it for about four days, at which time I did feel physically worse, kind of run down and lethargic. So the stuff definitely is having an effect, it's just not doing anything for my disease progression. In addition to low testosterone, I also have low thyroid, so my endocrine system is all messed up. Whether this is a cause or an effect of the MS is one of the great unknowns...

marcstck wrote:I also have low thyroid, so my endocrine system is all messed up. Whether this is a cause or an effect of the MS is one of the great unknowns...

My wife also recently found that she has low thyroid levels. My brother has Crohn's (autoimmune) and my sister has Grave's (autoimmune-thyroid).

An increasing number of researchers are coming to believe that the autoimmune diseases are kind of a syndrome, or family of diseases, or variance of the same disease, which I agree with.

Contrary to that, I read a research article last night in which the researchers claim they found likelyhood of autoimmune disease among family members of MS patients not to be any higher than the general public.

Bob

I'm going in on Tuesday and I'm taking a copy of this post. My bladder symptoms are those symptoms exactly. And they are getting worse. I will try almost anything that will help my bladder. It is without a doubt my strongest sypmtom. Thanks for the post.


Welcome to the board!
Lew

Do it. It is the one drug I take that has truly made a difference. Vastly improved my life. Hope it works as well for you. Good luck.

Seeker

Here is an abstract about this drug. I screwed up the spelling in my original post, though. It's Desmopressin Acetate. Based on my experience, I would have thought the results of this study, though they are highly significant, would have been higher. And I don't just use it for sleeping. If I limp off to to a bar or party and drink, it's also effective.

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I had figured your typo out last night. My wife is in nursing school and we pulled out her Davis's drug guide and found the missing "s"! If I could quit the nocturia I feel like I could get much better quality of life simply by getting some sleep! I am very excited to find another avenue to explore for my bladder issues. I simply cannot use the Ditropan or Detrol since the way they dry you up so bad.