Quote:
Originally Posted by Southern Bell
Jeff,
I hope you see some improvement with the Baclofen and Valium. As a side note, my initial neorologist also had me taking a high dosage of Dantolene along with a lower dosage of the Baclofen. Dantolene is no longer used I think because it is a very powerful drug and will have more of an adverse effect on your internal organs. In fact the pharmacy had to special order the Dantrolene everytime my prescription was renewed because it is no longer carried in their stock. That told me that it probably wasn't a very good drug to be taking.
I have changed neurologists this year to one who is more specialized in MS and he was amazed that I was taking the Dantolene. He immediately increased the Baclofen from 10mg per day to 20mg and started weening me from the Dantrolene. I have completed that transition and have seen no change in my SPS. I'm so thankful that I found a better neurologist that maybe understands MG better. The other neurologists specialty is ALS so I was just an amazement because neither he or other neurologists he questioned had ever heard of anyone with both illnesses. I suppose it was good conversation over a cup of coffee.
Good luck,
Becky
Southern Bell
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I've actually seen a huge improvement with the meds. She started me on 10mg of Baclofen and 5mg of Valium, both four times a day. But the scripts said I could go up to 20mg on the Baclofen and 10 on the Valium. Unfortunately, she was in town for about three days and immediately left for another conference, so I wasn't able to ask how quickly I could titrate. I guess its good that she was able to fit me in while she was back since her secretary called me and asked if I could come in with about a day's notice and it would normally take weeks.
I've played with the dosing on my own and settled on the full 20 of baclofen, and 7.5 of the Valium. Between the two, I've been able to walk almost normally (though I've been sore since I've been using a walker and a wheel chair for about two years and was only walking about 50% of the time before that). I tried taking a bit less since its hard to stay awake with it, but I start stiffening up again. I've found caffeine really helps, though.
People at work keep seeing me walking around now and are asking me about it. It reminds me of the last scene in Dr. Strangelove where Peter Sellers get out of his wheel chair and shouts, "Mein Führer! I can walk!" After the fourth or fifth time I explained about SFS, I thought about just using this as a pat answer, but decided at least half the people at work wouldn't get the reference; so I still go into a detailed explanation as to what suddenly changed over a weekend.