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Post by georger on Dec 13, 2018 0:21:57 GMT
Interesting question. Initially after a month or 2 or 3 on a low dose, verapamil seemed to have little or no effect. After quite a few months, maybe a year, of gradually increasing the dose and gradually increasing exercise I went from not being able to walk a step to walking 1 km with 2 sticks. My primary physician would check my blood pressure to make sure it wasn't being depressed and then increase the dose every few months. Most improvement was gained at a dose of 300mg/day and am now on 380mg. So my doctor has given me the gift of 12 years of walking. What an unbelievablly fantastic gift!
I have to emphasise that it's not just the drug, that's the basis of course but it was necessary to restore strength and endurance by gradually increasing activity and exercise, always stopping short of muscle soreness. Not easy.
Have had the odd cramp, but who hasn't? I would not ascribe that to TAM. Particularly in the early days of TAM before I understood, I'd get muscle soreness and aches from doing too much just everybody does but never the excruciating intractable pain that seems to bedevil other TAMites.
So it is definitely possible for some odd TAMites (some would say very odd) to gain strength.
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Post by georger on Jan 21, 2019 23:17:31 GMT
May I ask a question? Have you ever had elevated CK (also known as CPK) or any other marker of inflammation and the like such as ESR or ANA on a blood test?
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Post by kilerb on Jan 21, 2019 23:28:37 GMT
May I ask a question? Have you ever had elevated CK (also known as CPK) or any other marker of inflammation and the like such as ESR or ANA on a blood test? Hi... Was this for me? I have not. At least not that I know of. Unless it's standard when they take your blood during a checkup. By the way, I'm trying to send my DNA to those guys in France, but none of the labs in LA seem to do this. Have you had any luck with doing that? Thanks! |
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Post by georger on Jan 22, 2019 0:23:52 GMT
Thanks. Yes, just curious because I'm having all these tests again. Every time I've had them over the years they've been negative which is a significant difference with other TAMites. CK seems to be very high in most.
I did send my DNA to France, but that was so long ago as to be no guide these days.
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Post by kilerb on Jan 22, 2019 0:46:44 GMT
Are you still taking verapamil? Are you able to walk further distances? Can you stand in one place for a long time?
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Post by Craig Lane on Jan 22, 2019 20:31:55 GMT
It seems nearly every case of TAM is as individual as the people suffering. My blood test showed elevated CK levels. It was initially thought that I had a chest infection which was evident in the early days of testing. But, the infection got sorted and the CK levels remained high. So after a while they just ignored them.
I am only on a low dosage of Verapamil (120mg) as I have low blood pressure as normal and it has been suggested that higher dosage could cause it to go too low permanently. Not an option I'm interested in pursuing. However even at that level it has been beneficial to me. I didn't appreciate how much until I was hospitalized by an asthma attack and they stopped all my meds.
I sent my DNA to Dr Bohm as well and I don't have the STIM1 fault either.
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Post by kilerb on Jan 23, 2019 0:31:04 GMT
Dr Bohm mentioned something to me about an asthma medication being beneficial to people that do have STIM1 (which I'm not sure I have since I haven't found a lab to send my DNA yet...) But has anyone here heard of this? If so... What is the medication and what benefits does it hold? And when it comes to Verapamil, that just slows the weakening down? Or does it actually help reverse things in some cases? Thanks!
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Post by georger on Jan 23, 2019 1:36:57 GMT
Yes, I am still taking verapamil. It doesn't just slow the disease in those who are fortunate enough to benefit from it, it reverses the effects of the disease. But I don't know too many who have tried it and even fewer who have continuing benefit.
As to an asthma medication, maybe this is oral steroids. Search on "steroid-responsive tubular aggregate myopathy" and you will find the 1991 report by Gilchrist who describes the spectacular effect of oral steroids on a TAMite. On the basis of this research I was prescribed steroids years ago but it had no useful effect. On the other hand, maybe Dr Bohm is referring to another asthma medication. What did he actually say?
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Post by kilerb on Jan 23, 2019 1:54:00 GMT
He said that if it's the right gene mutation (STIM1 I believe) there has been some help with an asthma medication, but he'd want to see my DNA before really getting into it. Can't find a place that will ship my DNA yet. Apparently it has to come from blood, not saliva.
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Post by kilerb on Jan 26, 2019 1:10:42 GMT
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Post by georger on Jan 27, 2019 2:36:52 GMT
Thanks for that. We've seen a lot of research into the genes responsible, so good to see one that points to a treatment. You have to ask how long it would be for an affordable available medication. I'm always surprised at the amount of research into TAM given that it's way beyond rare but I suppose that fundamental research has a wider application.
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