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Post by txtamsufferer on Aug 20, 2007 3:30:55 GMT
Hello All-Just found this forum and was diagnosed just a few months ago. Hope to be around to talk and help other TAMmers.
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Post by georger on Aug 21, 2007 1:49:49 GMT
Welcome txtamsufferer
Can I share a bit of good news? I walked 1000 metres yesterday. Used to be only able to walk 4 metres. Yes a 250 times improvement, due in part to the performance enhancing drugs. So if they tell you there's no treatment for TAM, give 'em the finger. (Interesting to see if Craig's filter lets that one through, it would not let me say Richard cranium.)
Cheers
George
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Post by Craig Lane on Sept 16, 2007 20:30:12 GMT
Excellent news 'George'.
(Not my filter, but it will let fingers through. Please be careful where you are putting them).
At the rate you're progressing you'll be back to work B4 you know it.........
Any down side to this wonder drug. The lower blood presssure could cause probs for some folk but be an added benifit for those highly stressed types.
Any one else trying this treatment?
(not sure how it's going to enhance performance if it lowers yer blood pressure)
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Post by georger on Sept 17, 2007 1:10:19 GMT
Back to w***, am surprised that the filter let that word through. Actually I had retired before TAM struck.
Side effects to verapamil? As with any potent systemic drug there is a whole list of possible unwelcome side effects but I have none. It helps if you raise the dose slowly and the body adjusts so that blood pressure is not lowered. Another from this forum is benefiting from verapamil. He has issued this warning - dantrolene and verapamil are a dangerous combination. Crikey dantrolene is dangerous enough on its own, so dump the dantrolene if you want to try verapamil.
How does it work? Verapamil inhibits calcium ion release in the muscle cell. This action on cardiac muscle and the arterial walls lowers blood pressure. As a side effect verapamil also affects calcium release in skeletal muscle. TAs are thought to result from the cell defending itself against excessive calcium concentrations, so verapamil may inhibit (and reverse?) TA formation.
Anyway stuff the theory (oops sorry Mr Filter). It works for me.
George
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Post by georger on Sept 17, 2007 2:06:10 GMT
PS See the new thread "That's what they say ...". Silly, stupid or funny things that have been said to you about TAM
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Post by jaywarren on Oct 20, 2007 3:33:51 GMT
Hi - I am a 55 year old male who was diagnosed with TAM two years ago. My symptoms are severe muscle pain, shortness of breath, itching all over the body (especially face and genital area) with little to no sex drive, sometimes my skin feels as if it is burning. I have episodes or attacks of alternating between feeling extremely hot or cold at any given time. Needless to say, I am depressed at great time of the time. Did I mention that my concentration is bad too?
I really want to know if any other TAM sufferers have any or all of these symptoms? When I speak to doctors about this they don't have any real answers and look at me as if I am nuts, especially when I mention the burning and itching. I have had so many medical tests and they all come back negative. I have been prescribed Lyrica and Neurontin with no success. I seem to experience most of the side effects of the drugs
in the northeast, USA
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Post by georger on Oct 21, 2007 10:37:57 GMT
Hi jaywarren, I think that everyone with TAM has had severe muscle pain at one time and for many this continues. Some, including members of this forum, have such savage pain that you wonder how they can live. There is one man in Australia who is on morphine and it is ineffective. SOB is very rare in the TAM medical literature and have never read of the other effects that you describe being related to TAM. A lot of TAM folk in contact on the web do seem to have other strange symptoms, unexplained by doctors. Would be very interested to hear from others about this.
You talk about doctors looking at you as if you are nuts and multiple tests coming back negative. This is so familiar that I can really sympathise with you. Is there anyone with TAM that this hasn't happened to? Let's hear from you.
Of the four drugs that I have tried, only verapamil has worked. Some are helped by dantrolene or prednisone.
Very glad that you contacted the forum. Thanks to Craig. Keep in touch and let's know how you go.
George
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Post by georger on Dec 3, 2007 22:29:26 GMT
Talking of strange symptoms, (don't laugh) since TAM I have had odd toenails. Fingernails look OK but my toenails are thick and brittle and chalky underneath. Very trivial but as wonky calcium regulation has been implicated in TAM I am curious to know whether other TAM folk experience this. So let's hear about your nails.
Am continuing to get magnificent but slow improvement with Verapamil. Verapamil seems to back off the exercise intolerance but this produced no change in symptoms until I increased my level of exercise to build the muscles up again. Much of the improvement has been since an increase to 360 mg/day. Anyone else trying Verapamil?
People who see me walking again are amazed and I do enjoy showing off. Quite disgraceful really.
George
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Post by AjayK44 on Mar 30, 2008 17:35:53 GMT
Hi All,
New to this forum but have posted before on braintalk communities when first "diagnosed" with TAM.
I am told I have skeletal muscles containing Tubular Aggregates but not in enough quantity to say I have TAM. This seems very confusing to me especially as my symptoms are getting worse since the initial biopsy about Jan 2007.
I am getting many of the symptoms that others describe and my legs are increasingly feeling extremely heavy as well as the pain and pins and needles.
The additional problem I have is that I frequently go into urinary retention and the last two times this happened I could not walk at all with extreme weakness and pain in my legs. I have now had some biopsies taken from the smooth muscle inside my bladder and these are currently being investigated to see if they also contain Tubular Aggregartes. If not I guess I have two completely different problems.
The only drugs I have been tried on are Lyrica and Pregabalin - both made things worse.
In addition I am getting periods of memory loss (up to 24 hours) on the worst occasion and again don't know if this is connected with the TAM or not.
The drug Verapamil seems to be mentioned a lot here but not sure if it can be prescribed in the UK. Does anyone know?
Any comments / help would be appreciated as I seem to have reached a brick wall.
AjayK44
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Post by georger on Apr 2, 2008 4:05:02 GMT
Hi AjayK44
Braintalk is great and is how many got in touch in the first place. As a forum this one is much better, thanks Craig.
A lot of TAM people have a wide range of other symptoms, but a lot do not. I have read a lot of the medical literature on TAM (my wife being a medical librarian) and cannot recall any of these being attributed to TAM. Specifically, have never seen urinary retention or memory loss attributed to TAM. I would be looking for a diagnosis other than TAM for your other symptoms. That said new and surprising things come up about TAM every year, so I would appreciate it if you would keep us posted. We are here to learn from each other.
Verapamil is pretty well available world wide, including the UK, known by many brand names such as Cordilox. It may not help you but it has been just short of miraculous for me. But it is not a simple take a pill treatment. In my case I had to v slowly build up to 360mg/day, quite a high dose, while being monitored for low blood pressure. It took months to work and required me to ease back into exercise v v slowly.
Good luck and do let us know how you go.
George
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Post by AjayK44 on Apr 5, 2008 15:09:52 GMT
Went to see my neurologist the other evening and he said he will investigate the possibility of putting me on Verapamil. He was concerned about the side effects it could create but I insisted that I have to try something.
I was admitted to A&E this week after collapsing but my condition was not taken seriously. A junior doctor at my local hospital even had the audacity to state the definite TAM symptoms I am experiencing (as diagnosed by a professor of neurology in London) was a wrong diagnosis. How do you get taken seriously with this condition?
I am still waiting for the bladder biopsy results.
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Post by georger on Apr 9, 2008 4:36:09 GMT
How to be taken seriously? Wow that is a toughie and I don't have an answer. Some doctors are threatened by TAM. They probably have never heard of it and if they do a quick superficial web search it can be quite misleading. You at least know one TAM case history by heart which is more than they do and so they are threatened. In my case I have found a GP and a physio who are strong, smart, highly qualified and not threatened by the fact that they do not know TAM as well as we do. Physios as a group, I have found, take you seriously even pre diagnosis but that has not been everyone's experience. But this is not going to help at A&E. Any ideas anyone?
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Post by AjayK44 on Apr 14, 2008 10:03:46 GMT
Thanks George. Had a CPK blood test the other day and the level was 191. Last year when I was first diagnosed this level was 358. The normal range is apparently (55-170).
Does anyone know if CPK levels in the blood have a direct bearing on how you are feeling is respect to TAM.
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Post by AjayK44 on Apr 14, 2008 10:22:05 GMT
Hi Jaywarren,
Just reading the post by jaywarren higher up here. I also get a lot of itching and not so much burning but a sensation that needles are pushing out from inside my skin to the outside. Certainly an extreme amount of lack of concentration but this could be the medications I am on for depression. Pain at times very severe. I can only write with a pen for about 4 minutes before I am in agony in my fingers and trying to hold an umbrella in the rain yesterday was like someone trying to cut a knife through my arm. Frequent shortness of breath even when resting but this could be related to my mild asthma.
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Post by georger on Apr 16, 2008 6:41:57 GMT
Elevated CPK is a marker for muscle disease but is not particularly useful for diagnosing TAM because CPK can be raised or normal. As to whether you actually feel worse when CPK is up, I don't know, mine has always been normal. The only normal thing about me, some unkind folk would say. Can anyone with raised CPK answer this?
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