Discussions By Condition: Muscle conditions

Tubular Aggregate Myopathy (TAM)

Posted In: Muscle conditions 7 Replies
  • Posted By: Anonymous
  • July 15, 2013
  • 00:01 AM

I was diagnosed on 2001 with this disease, extreme muscle weakness especially in the legs. The diagnosis came after a biopsy of my thigh muscle, and extreme microscopic tests. They really did not know anything about this disease because it is so rare. I take pain medication, because the pain is quite intense. Just wondering if anyone has any new information on this disease. thank you Jim V

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  • Hi Jim,I am recently diagnosed and in all the online research I've done I cannot find much info or many folks wanting to talk about. I am scheduled to go to the MDA in Salt Lake City the first week in Sept and am working on a list of questions for the doctor. From what I have gathered though, I may leave with still having some questions unanswered.
    Yvonne123 1 Replies
    • August 26, 2013
    • 04:55 AM
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  • Hi Jim & Yvonne,It's quite true to say that many individual doctors know little or nothing about this disease, There is actually quite a lot known for such a rare disease but you have to wade through a huge amount discarding wrong, contradictory and speculative information. Doctors do not seem to have the time to do this. Some examples of nonsense on the web:- TAM is inherited, autosomal dominant or recessive. Yes but many more cases seem to be sporadic.- Someone claiming to be a doctor states that 10% of cases turn into ALS. Complete rubbish.- TAM is a form of muscular dystrophy. No it is not.- You will see TAM defined as "A heterogeneous group of diseases characterized by the early onset of hypotonia, developmental delay ..." etc. Not so, this is just a general definition of a congenital myopathy which is a category that TAM is put in for want of anywhere better to put this orphan disease.Sorry to rave on, but you can see that I am not too happy about all this.
    SueCameron 2 Replies
    • September 1, 2013
    • 11:40 PM
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  • Hi Jim & Yvonne,It's quite true to say that many individual doctors know little or nothing about this disease, There is actually quite a lot known for such a rare disease but you have to wade through a huge amount discarding wrong, contradictory and speculative information. Doctors do not seem to have the time to do this. Some examples of nonsense on the web:- TAM is inherited, autosomal dominant or recessive. Yes but many more cases seem to be sporadic.- Someone claiming to be a doctor states that 10% of cases turn into ALS. Complete rubbish.- TAM is a form of muscular dystrophy. No it is not.- You will see TAM defined as "A heterogeneous group of diseases characterized by the early onset of hypotonia, developmental delay ..." etc. Not so, this is just a general definition of a congenital myopathy which is a category that TAM is put in for want of anywhere better to put this orphan disease.Sorry to rave on, but you can see that I am not too happy about all this.
    SueCameron 2 Replies
    • September 1, 2013
    • 11:40 PM
    • 0
    Flag this Response
  • Hi Jim & Yvonne,It's quite true to say that many individual doctors know little or nothing about this disease, There is actually quite a lot known for such a rare disease but you have to wade through a huge amount discarding wrong, contradictory and speculative information. Doctors do not seem to have the time to do this. Some examples of nonsense on the web:- TAM is inherited, autosomal dominant or recessive. Yes but many more cases seem to be sporadic.- Someone claiming to be a doctor states that 10% of cases turn into ALS. Complete rubbish.- TAM is a form of muscular dystrophy. No it is not.- You will see TAM defined as "A heterogeneous group of diseases characterized by the early onset of hypotonia, developmental delay ..." etc. Not so, this is just a general definition of a congenital myopathy which is a category that TAM is put in for want of anywhere better to put this orphan disease.Sorry to rave on, but you can see that I am not too happy about all this.REPLY: Thank you Sue, I an continuing the search for answer, currently I'm taking hydrocodone (750's 2-3 times a day) for the pain but don't want to do this for the rest of my time. I'm going back to Univ of Mich. for more info, it is doubtful there will ever be a cure but I am hopeful for a treatment, you never know
    Anonymous 42789 Replies
    • December 14, 2013
    • 04:46 PM
    • 0
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  • Hi Jim,Have you seen this? http://www.igbmc.fr/society/actualite/85/It's amazing that so many myopathies involve a deficiency but TAM induces an overload. I'm very excited about it.As to current treatment, there are a few worth trying. Have you tried calcium antagonists? In some people verapamil sounds as if it helps most. Good physical therapists, such as neuro PTs can help deal with muscle shortening. Gentle exercise can also help. The point is not to push your muscles into soreness, because TAM slows recovery from this. Increase the level of exercise whenever it seems comfortable to do so. Easy to say, hard to do. There's one account of benefit from gentle exercise in a hot pool. This makes sense because the warmth relaxes your muscles and reduces damage.Good luck.
    SueCameron 2 Replies
    • December 18, 2013
    • 01:01 AM
    • 0
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  • Hi Jim,Have you seen this? http://igbmc.fr/society/actualite/85/ Interesting that this gene defect involves an overload rather than the usual deficiency. As you say, you never know, there may be a cure one day. There is evidence that some people with TAM do not have this particular mutated gene. It's likely that they have another mutation. Given that TAM is such a heterogeneous disease, this may not be surprising.In the meantime there are treatments that may help some. There are several reports of benefits from calcium antagonists, particularly verapamil. Some benefit, some do not. One patient benefited but had to cease because of side effects. A good neurological physical therapist should be able to alleviate some of the muscle effects of TAM such as shortening.While TAM is intolerant of exercise and seems to affect the normal recovery and strengthening process after exercise, there is one account of benefit from gentle exercise, gradually increasing slowly over time as endurance increased. It seems that if this is pushed as far as muscle soreness, then the benefit is lost. This is a general therapy applicable to some myopathies and in dealing with chronic pain. Good luck.
    SueCameron 2 Replies
    • December 21, 2013
    • 10:33 PM
    • 0
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  • Hi Jim,Have you seen this? http://igbmc.fr/society/actualite/85/ Interesting that this gene defect involves an overload rather than the usual deficiency. As you say, you never know, there may be a cure one day. There is evidence that some people with TAM do not have this particular mutated gene. It's likely that they have another mutation. Given that TAM is such a heterogeneous disease, this may not be surprising.In the meantime there are treatments that may help some. There are several reports of benefits from calcium antagonists, particularly verapamil. Some benefit, some do not. One patient benefited but had to cease because of side effects. A good neurological physical therapist should be able to alleviate some of the muscle effects of TAM such as shortening.While TAM is intolerant of exercise and seems to affect the normal recovery and strengthening process after exercise, there is one account of benefit from gentle exercise, gradually increasing slowly over time as endurance increased. It seems that if this is pushed as far as muscle soreness, then the benefit is lost. This is a general therapy applicable to some myopathies and in dealing with chronic pain. Good luck.
    SueCameron 2 Replies
    • December 21, 2013
    • 10:34 PM
    • 0
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