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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board

Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index

Re: Botox gone bad
Aug 12, 2006
Well, the Neuro said that he has done thousands of botox injections and never had anyone with the same reactions I have had. He tried to say it was the topamax, but I reminded him I have been on a higher dose than I am now without these issues, and I have also been on it for nearly 5 years, why have problems now? He recommends I stay on the Duragesic patch at the 50 (is it mg?) level for another 8 weeks and give this time to wear off. Also, to take something for inflammation... I get along well with Aleve, so we decided on taking that at prescription strength for about a month, then see how I am doing.

He wants me back at 8 weeks, as he says "I do many more things than just botox injections. I am a regular neurologist, I do more than just injections all day. I am amazed at your spunk and determination and I have a few more things I want to try that I think will help you, so please be sure to come back. But I want to be sure the botox has time to work out of your system first." I did like him, and two of my other doctors think very highly of him, so I guess I will go back.

He said he would not think the botox would react with the RSD like it did - but that anything is possible, and obviously something happened with me. He also told me about not being afraid to be on the duragesic because it would help the RSD to not be in a state of pain like I have been for the year that I have had it and been trying to go without pain medication. He said he felt it was important to
1) be medicated enough that I could do the occupational therapy without a lot of pain.. a little is ok - a lot means I am undermedicated...
2) do the occup. therapy IN THE BEGINNING year to two years especially -with medication... not save the medication for later on. Doing the therapy with the pain meds means getting a lot more stretch, etc out of each session.
3) continue to use all available methods like botox, massage, etc to loosen up the stuck muscles in my shoulder so that I can gain back as much movement as possible in that first two years post my original injury.

After listening to him, I realized he did know more about it than I gave him credit for. When I first went to him, he said he didn't "treat" it, would not take me as an "RSD" patient, but would do the botox. During my exam, I explained how I have searched and searched for a good neuro, physiatrist, pain doc etc who really had an interest in the RSD, but could not find one. Did he know ANYONE???? So maybe he has decided to treat me after all.

I saw him on a Thursday. By the following Wednesday, when I saw my family doctor, who has been my main treating doc for the RSD (and doing good at it!) Well, my family doc already had a letter from him outlining his recommendations. Less than a week after I had been there. That's pretty good, isn't it?

So, botox is bad for me... EMG is BAD BAD BAD for me... he thinks it may have been as bad as the botox.... which I TOLD them when I went there to begin with... but maybe there is something else he has in mind. We will see. At least he is a doc who likes topamax better than Neurontin and lyrica for this. That makes me very happy. I hated Neurontin, and could not take lyrica AT ALL.

Thanks for hanging in here this long.

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