Cookies help us deliver our services. By using our services, you agree to our use of cookies. Learn more

Treatment updates?

smithdzn Message
19 Jan 2015, 02:47 AM

I think I may have chatted with some here before, but on a previous forum. I have been able to successfully ignore my symptoms for about the past six years. I went off all treatments, suffering only mild occasional symptoms. With the need to return to some type of treatment, I'm wondering if any thing has changed since my routine of calcium channel blockers (nifidepine) and carbatrol. I have moved and lost my diagnosing physician and need to find a new one here. It's like starting over and trying to convince folks that it's not in my mind. Meanwhile, the pain persists. Nothing new in that regard though. What are others having success with treatment wise? -Thanks
george50 Message
26 Jan 2015, 11:04 AM

Well if you have managed to ignore TAM for 6 years, you have done exceptionally well. As you say, calcium antagonists are the big ones, particularly verapamil. In the earlier years gentle progressive exercise can help as it does for quite a range of such maladies. Hydrotherapy and physiotherapy can also be helpful. Gentle stretching, possibly after heating muscles, can be necessary to counteract inevitable shortening of over-exercised muscles. There is a range of dietary supplements, mentioned by some, but little evidence of continuing benefit. People have tried a huge number of analgesics. Apart from those, we just have to adjust our lives to advancing disability with the help of suitable aids. And of course we hope for some advance in treatment from DNA research. Have you contributed a DNA sample to the research at IGBMC? I guess that none of this is new to you. Anyone else have any ideas?
smithdzn Message
28 Jan 2015, 01:36 AM

By ignore, I really mean I have not been actively treating, which I know is risky. I have had symptoms and pain and suspect my tolerance for such is high, having been misdiagnosed for so many years prior. My form is exacerbated by exercise, so I've basically been sitting as stationary as possible for six years. I have not contributed a DNA sample to the research at IGBMC -in fact I don't even know what the acronym stands for. I'm willing to, just need to know how. Getting connected to a doc here soon, as I moved and hopefully will not have to start all over again. So far, so bad with that hope though. I think we've chatted before George, hope all is well with you. Are there more females in the group now? I recall being the only one last time we chatted.
george50 Message
1 Feb 2015, 12:17 AM

You have done really well if you have managed to slow the progression by avoiding over exercising. Many do not. I have been careful, but not careful enough. Hard to know your limits unless you exceed them occasionally. See "IGBMC": Might be useful to point your new doc to this to show that you have a real disease. I sent my DNA to IGBMC and very soon had the reply that I do not have a mutation in the STIM1 gene. They are looking for the mutation that I do have and I suspect that this may take years. My contact is the researcher Dr Johann Böhm and rather than broadcast his email address, here it is on the bottom of this website for "an unrelated myopathy": I cannot point to any research on this, but it is my impression that TAM that runs in families with some cases of fairly early onset has roughly balanced incidence between the sexes. But single cases of middle age onset do tend to be predominantly male. On the other hand, I am frequently wrong. Besides the calcium channel blocker and avoiding over exercise, what have you found helpful? Thanks for the chat.