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Post by lsmith on Jan 19, 2022 0:26:24 GMT
Just wondering if this is still an active forum. Is anyone with TAM still here?
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Post by kilerb on Jan 19, 2022 0:53:43 GMT
I’m here still. Boards just haven’t been that active recently.
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Post by georger on Jan 19, 2022 1:20:53 GMT
Yep, I check regularly. How are you going?
Not sure if I told you that IGBMC sequenced my exome but did not find any of the 4 genetic mutations for TAM so far discovered. Not only that, but none of the obvious mutations for other myopathies. Must be all in my head.
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Post by kilerb on Jan 19, 2022 1:31:32 GMT
Oh wow, that's interesting. You might have mentioned it on another thread. Wonder what the deal is. (If you're talking to me, this forum is confusing. hahaha) I just started going to the gym to try and work out my supporting muscles. Doing hip adductor and abductor exercises. Hopefully it helps a little.
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Post by georger on Jan 19, 2022 23:36:16 GMT
Good luck in the gym. I used to find careful exercise beneficial. Wait 2 days to see if there is delayed onset muscle soreness and if not continue. Have been reading about concentric exercise versus eccentric exercise. Apparently eccentric exercise is less likely to cause DOMS.
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Post by kilerb on Jan 20, 2022 2:32:28 GMT
Thanks... You used to find it beneficial? Not anymore? I'll have to look up the differences between concentric and eccentric exercise.
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Post by georger on Jan 20, 2022 21:39:55 GMT
Oops, that should read "Concentric exercise is less likely to cause delayed onset muscle soreness."
No not anymore. I used to make great gains with careful very gradual increasing exercise over months rather than days or weeks.
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Post by kilerb on Jan 20, 2022 22:07:02 GMT
Were you able to strengthen your quad muscles doing that? Or just other muscles?
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Post by georger on Jan 21, 2022 22:54:43 GMT
No haven't had much trouble with the quads. Rather than exercise specific muscles I used to walk progressively longer distances, only increasing when comfortable, usually weekly. Similarly, swimming for the arms. We would all be different given the number of discovered and probably undiscovered gene mutations.
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Post by kilerb on Jan 21, 2022 22:57:42 GMT
Yeah totally... How are stairs for you these days? How old are you again? Thanks!
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Post by georger on Jan 22, 2022 22:15:34 GMT
A dozen steps are OK, with a handrail. But no good up more than 2 or 3 steps up a ladder. Have found that I can get a bit of height by carefully standing on a table which is not bad after 25 years of TAM. So this approach is exercise via everyday activities. Will be interesting to see how your exercise of specific muscles helps.
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Post by kilerb on Jan 23, 2022 4:37:06 GMT
If I have any improvement, I'll let you know. Really hoping there's an ORAI1 calcium blocking pharmaceutical soon. I hear it's being worked on. Is there any possible way for you to get a really comprehensive DNA test done to see if any genes are mutated that might not have been checked individually?
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Post by georger on Jan 24, 2022 0:09:06 GMT
I'd forgotten that about IGBMC researching a calcium blocker for ORAI1.
IGBMC were very thorough in checking my DNA against known mutations and against my mother's for comparison. But further DNA analysis is a possibility, but not now with covid rampant in the community.
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Post by georger on Nov 27, 2023 7:23:42 GMT
Hello TAM folks, Things have seem to have gone quiet on forums. There is some recent research: pubmed.ncbi.nlm.nih.gov/35805973/I have improved significantly. To me this doesn't sound like TAM and I really doubt the diagnosis. How are you going and has anyone else improved? |
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Post by kilerb on Nov 27, 2023 7:29:59 GMT
I believe it depends on which gene is causing your TAM. From what I’ve heard, if it is ORAI1, they are working on pharmaceuticals like this that will prevent as much calcium from entering the muscle, which is what causes the issue at hand. They might be working on similar drugs for other gene mutations as well. A couple of doctors that I have spoken to are hopeful that it could actually reverse the weakness. Not just keep the strength where it is at. Time will tell.
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