Still Kickin leteeters

[leteeters]

Yes I know it has been a long time since I last posted about 26 months. I'm Sorry I could make excuses but no point. Ok I am taking same pain mads as before. I am on 240mg verapamil doc took me to 300mg and then back to 240mg she was afraid to much would have bad side effects. The only side effect I've had is some dissyness. A little of my strength has come back I am able to do the things I need to. Verapamil is not the miracle that I was hoping for but you gotta start some where. My doc retired three months ago, new doc is only going to be with me six months and then he moves on. New doc wants me and I said me to find a specialist some where in the US and go for a visit. That's fine with me but I'm not sure that I can find someone specializing in TAM. So not a whole lot has changed with my condition over the past two years. My ck levels go up and down like a roller coaster I still have serious muscle pain and cramps, tingling, numbness, no where near as strong physically but I am able to do the things I need to. I will try not to be absent for so long this time. So about two and a half years on verapamil that should be long enough?

Glad to see everyone here, thanks to everyone.

[Craig Lane]

Nice to hear from you. It's great that folk are still visiting the forum. It all went very quiet a while back, just after we posted Dawn's wonderful collation of the story so far.... A valuable piece of work that I still refer to. I think it's a great idea to try to find an expert in TAM. Not sure how successful you will be considering its rarity. I have been lucky enough to find one Doctor who knew what it was without looking it up. She visits the USA lecturing on various medical subjects but I don't think she would consider herself an expert. Very lovely, helpful and dedicated which all go a long way when you spend every day in pain, cramps tingles and twitches. Along with a large helping of unhelpful muscles who would rather drop you on the floor than do their job and leave a body stand without aid.
Hope a few more of our fellows join in and say hallo.

[leteeters]

I read Dawn's story very nice and very appreciated. I've had to print a lot of stuff on TAM and get the doctors to read it. I know the board gets quite but god bless everyone that keeps it going. This board has been more help to me than anything else. Well we'll see how goes it thanks for reply.