September 23, 2013

Fampyra diaries: epilogue

Hey all - 
Well, Fampyra and I have parted company, at least temporarily. I was finding it contributing to my gastric reflux, it was disturbing my sleep to the point where my little FitBit was recording me in bed for 9 hours but asleep for 3. I'd think it was the machine but before I took Fampyra and after I stopped taking it, my sleep hours lengthened to 6 or more. So I must've been doing something when on it.
Tough to guess as I am in bed alone (see previous post) but thats my thought.

Plus I can't really afford the $570 monthly charge - I could, I suppose, if I really felt it was helping that much.

Of course, now that I'm off it, I am having increasing trouble walking but to be fair, I was before I went off it, too - just the progress of the disease, I think.

I have an appointment with my doc in October and will get re-evaluated then. She may think I should try it again. I may differ. 

If any of you have had sleep disturbances when on Fampyra, write it in the comments....would love to know how everyone else's experiences are. I just know I need more than 3 hours of sleep a night...

Arggh and Bloody Hell and sex and MS

Okay. A few months ago I pitched a book about MS and intimacy and there was publishers interest in it - and then my co-author dropped out of the project and I was fed up and decided to not write it, for the moment anyway.

And then I saw this today and I am mad again. Once again, the "recommendations" are merely a list of things that go wrong in MS, and the recommendation to "Talk to your loved one".

OF COURSE it is important to talk to your partner (if you have one, which I don't and let me say that dating with MS is another whole ball of wax), but just talking about it won't help the problem. My experience in talking with neurologists and others about this is that they toss blue pills and stuff at men (lest their threatened penises get all worried) but provide nothing in the way of help for women other than a bottle of lube, which, face it, is more about the man than the woman.

It's so frustrating! Lately I've gone all completely numb again and I am cheerfully considering a cat as a life partner cos I have no reason to think about anything else, and yet I know there is no one in my health care circle who can help me.

So I'm off to find another co-author and research this myself and then share what I find out. Cos if you're out there with MS and want a little physical affection, you are alone at the moment.
from the inimitable

Here's the OH SO HELPFUL article.

Neurologic Impact of Multiple Sclerosis on Sex

Sexual arousal begins in the central nervous system, as the brain sends messages to the sexual organs along the nerve pathway in the spinal cord. MS-related changes to these nerve pathways can directly or indirectly impair sexual functioning. For example, the following symptoms can occur as a direct result of myelin breakdown in the spinal cord or brain:
  • Decreased sex drive
  • Altered genital sensations (numbness, pain, increased sensitivity)
  • Difficulty or inability to maintain erection
  • Decreased vaginal lubrication
  • Decreased vaginal muscle tone
  • Ejaculation difficulty
  • Problems having an orgasm
The following symptoms can arise as a consequence of MS physical changes or treatments:
  • Fatigue can suppress sexual desire
  • Spasticity can interfere with sexual positioning or cause pain
  • Sensory changes can make physical contact uncomfortable.
  • Pain

Psychological Impact of Multiple Sclerosis on Sex

A loss of interest in sexual contact or intimacy may arise as a result of psychological or social issues associated with multiple sclerosis, such as:
  • Depression
  • Performance anxiety
  • Changes in self-image or body image as a result of disability

What Can Be Done to Improve Sex With Multiple Sclerosis?

Talk to your partner about your sexual issues and multiple sclerosis. The most important way of dealing with sexual difficulties is to discuss your feelings with your loved one. When MS begins affecting your sexual desire, talk to your partner. Confiding in your partner deepens intimacy and may help resolve concerns relating to sexual intimacy.