Anyone tried Botox?

RLS girl · Post by **RLS girl** » Mon Apr 24, 2006 6:21 pm

I guess the subject line says it all. Anyone who has tried medical botox please share your experience.

Thanks and take care.

Post by **ViewsAskew** » Mon Apr 24, 2006 8:00 pm

Do you mean for RLS specifically or for any other issue like muscles spasms or for skin tone improvement?

RLS girl · Post by **RLS girl** » Mon Apr 24, 2006 9:45 pm

Yes, I mean for the sensations caused by RLS.

Post by **ViewsAskew** » Mon Apr 24, 2006 10:52 pm

I've not heard of anyone doing it; did you ask because you have had a great brainstorm that this might help or because you read about it? I wish we had a doctor on board to help with more knowledge of whether the process might help.

RLS girl · Post by **RLS girl** » Tue Apr 25, 2006 12:47 am

Well, actually I've read a lot about botox because of the very localized sensations I'm getting in my face.

For a while, I thought I had a "sensory tic" which is a rare form of tic that doesn't include an actual movement, it's just an abnormal sensation. I researched different treatments for it and botox was listed as a treatment. The research (as limited as it might be) indicates that botox not only relieves motor tic actions, but also the associated abnormal sensation that can accompany tics or sensory tics.

I contacted a very good specialist in movement disorders and asked her (through email) if she provides botox. She does, and I am going to see her in May. Now that I am having the sensations in my legs as well and have been diagnosed by my PCP with RLS, it is more likely that the sensations in my face are RLS as well, and not a sensory tic (though the two conditions share many of the same features). It only makes sense that if botox can intercept signals of paresthesia/urge to move in one disorder, they can in other disorders as well. So, I am going to run this by her as an option for me. I was just wondering if anyone else had any info or experience with it.

RLS girl · Post by **RLS girl** » Tue Apr 25, 2006 12:59 am

Here are some additional things I've found on the net. Read this entire article as it contains references about everything I posted earlier:

http://www.aasmnet.org/JCSM/AcceptedPap ... antRLS.pdf

and here's another tidbit:

Taken from http://www.medscape.com/viewarticle/509045

Treatment
Successful Use of Botulinum Toxin A for the Treatment of Restless Legs Syndrome: A Case Series

Rotenberg J, DiFazio M
Poster Abstract 0806

In a series of 3 patients with RLS, botulinum toxin A (BTXA) alleviated symptoms, reduced medication use, and/or reduced daytime sleepiness with minimal untoward effects. Investigators identified areas of maximal discomfort and injected them with BTXA. Symptoms improved in all 3 patients, with a duration of effect ranging from 10 to 12 weeks. None of these patients experienced any adverse events, and all also responded to subsequent BTXA injections.

Thus, these 3 patients experienced significant improvements in RLS symptoms and/or a reduction in medication use after intramuscular BTXA injections. The course of response corresponded with its typical course of efficacy in other disorders.

Post by **ViewsAskew** » Tue Apr 25, 2006 3:21 am

Hopefully someone who is lurking or who happens by and has familiarity with this will post. As of now, I haven't read any posts about anyone trying it; I read five four RLS boards regularly.

Please keep us apprised about your situation as you find more research and finally meet the new doctor. I can only imagine how frustrating it must be to have those feelings in your face all the time.

ksxroads · Post by **ksxroads** » Tue Apr 25, 2006 4:12 pm

This is very interesting. I look forward to hearing more. Is the movement disorder specialist in Nebraska? Hazel

RLSgirl · Post by **RLSgirl** » Tue Apr 25, 2006 5:02 pm

The sepcialist is actually in Arizona. I have to fly out to see her. By the time I see her, I will have waited for almost 4 months to get in. She spends 50% of her time in research and the other 50% treating patients. Her emphasis is on PD but she seems to be very knowledgeable about all movement disorders. She is also a teaching physician, which is a good sign. There is also an online video of one of her lectures to med students on drug-induced movement disorders. I watched it and thought it was wonderful that she was so knowledgeable about those side effects, because some doctors choose not to talk about those risks or don't even know how real the risks are. Anyway, I guess that's beside the point. But I am very hopeful about this and I will report back whatever I find out or whatever happens with my treatment.

And I encourage anyone else to read through that entire article using the link in my previous post. This could prove to be a very effective treatment for RLS sufferers. Lord knows we need something better than what's out there.

And P.S., botox is already being used for Parkinson's, Spasticity, Dystonias, and a variety of other movement disorders with great success.