Welcome

[denny]

I have raised CPK as well. Besides TAM, I also have Lupus. As I understood my Rhuemotologist, when your CPK is elevated, it is a sign of muscle damage. For example, if I have a flare up, or overwork myself, then have a blood test, I will most always see elevated CPK. The CPK will go down somewhat as the flare up dies down. Again, this is how I understood what happens, however I am not sure that I am correct.

[georger]

thanks denny,

Interesting that your blood tests and coincide with how you feel. Sometimes not the case with TAM, the only sign being on muscle biopsy.

What about some more contributions to the "that's what they say" thread. Can it be that Craig and I are the only ones to experience the wierdness of doctors and others?

I have had a significant downturn. Things that I used to be able to do are getting much harder. Either I have been overdoing it (likely) or the disease has progressed. Still on Verapamil; without it I would be very much worse. Am going to try Creatine and Vitamin B2 without any good evidence of their effectiveness in TAM. Anyone have any experience of these?

[AjayK44]

I have just spent about a month in a London Hospital with symptoms that I had attributed to my TAM diagnosis about 12 months ago. Now I am told (Without having another muscle biopsy done) that the number of Tubular Aggregates in my muscle are so minimal that TAM cannot possibly be the main cause of my problems.

I have now been told I need neuro psychiatry as my brain is making up most of the symptoms.

Has anyone else been told anything about the density of Tubular Aggregates in their skeletal muscle?

I remain having the symptoms as deccribed by others in this forum and they are getting increasingly worse. I have however been put on Verapamil 20mg 3 x per day (at my request) What doses are other sufferers on? Also Lyrica (Pregabalin) 50mg 3 x per day.

[georger]

Thanks AjayK44 for more evidence of the wierdness of doctors. But they are all we have got, together with other TAM folk and our families.

Density of TAs? My experience is this, when they do a muscle biopsy it is in a place where they can hack out a pea sized lump easily and without damaging nerves, tendons, major blood vessels etc. So it is not necessarily where you have the most TAs. My biopsy came from the quadriceps which have never been the very badly affected. Anyway they found a few TAs to make the diagnosis. So, few TAs does not negate the diagnosis. In any case TAM is not solely diagnosed from TAs. The symptoms of exercise intolerance, pain and (for some people) cramps also contribute to the diagnosis. OK so you can have TAs without having TAM and the diagnosis of TAM is to an extent one of exclusion. So if they say it is not TAM, what is it? The psych angle is often a cop out.

Have had a few consults with a psychiatrist. His conclusion was that I had a physical disease. He regularly visits a neurology ward in a major hospital and nearly all the patients eventually get a physical diagnosis. Might be worth seeing the psych to help convince other doctors that you have a physical disease. As well as that, I find dealing with a TAM is hard and talking to a professional can help you to see that the glass is half full not half empty.

Verapamil - your 60mg dose seems very low. The dose in the article that all this is based on was 240mg per day. I did not get any benefit intil 180mg per day and most benefit at 360mg per day. This is a very high dose for someone with normal blood pressure and needs building up to slowly with regular monitoring of blood pressure. My blood pressure is about normal still. I can let you have the reference to the article if you or your doctors are interested. By the way the trial that the article refers to was only a few weeks. I did not find much benefit for a few monthe, so stick with it. Good luck.

[AjayK44]

Hi georger,

Many thanks for your support and information. I would much appreciate the reference to the article.

Thank you

[georger]

Here's the reference, together with the abstract:
MUSCLE & NERVE 9:635-641 1986
A DOUBLE-BLIND, PLACEBO-CONTROLLED, CROSSOVER STUDY OF VERAPAMIL
RUSSELL J. M. LANE, DOUGLASS M. TURNBULL, JOHN L. WELCH, MA, MSc, and SIR JOHN WALTON
Eleven patients, comprising three cases of McArdle’s disease and eight with an exertional muscle pain syndrome (EMPS) of unknown cause, entered a double-blind crossover study of verapamil and placebo. None of the patients with McArdle’s disease responded to verapamil, but two patients with unclassified EMPS experienced a striking improvement in symptoms and two others showed a partial response. No patient responded to placebo. Six of the eight cases with unclassified EMPS, including the four patients who responded to verapamil, had symptoms that indicated possible abnormalities of muscle metabolism, and four showed nonspecific biochemical, electromyographic, and muscle biopsy abnormalities. The two other EMPS patients had symptoms that suggested that a primary muscle disease was unlikely. They showed no laboratory evidence of muscle disorder, but had abnormal profiles on personality (MMPI) testing. Calcium antagonists, such as verapamil, may be useful in the treatment of some patients with benign exertional myalgia, but the mechanism of action of the drug in such cases is unclear.

[AjayK44]

Thanks george - this is very useful information.

[georger]

There was a landmark article on TAM in the January 2007 American Journal of Pathology. It has the unpromising title "Caveolin-1(-/-)- and caveolin-2(-/-)-deficient mice both display numerous skeletal muscle abnormalities, with tubular aggregate formation.". The abstract says in part "Cav-2((-/-)) mice represent a novel animal model-and the first genetically well-defined mouse model-that can be used to study the pathogenesis of tubular aggregate formation, which remains a poorly understood age-related skeletal muscle abnormality." It has some interesting conclusions. It firms up the connection between excessive calcium ion concentrations in the muscle cell and TA formation which confirms the treatment role of calcium antagonists such as verapamil. It also points to TAs causing poor muscle regeneration after injury which would disrupt the normal exercise, muscle injury, repair, strengthening cycle. This explains the type of pain and aching that I get after very little exercise but it does not seem to explain the very severe pain that others get. Anyway we can expect more research on TAs with these mice.

[texasmom5]

I am new on this forum. My son-in-law was just diagnosed last week with TAM. What are some of the medicines that you find helpful? We have no information on this disease except that there is no cure or treatment for it. I won't accept that. There has to be something that can help. His muscles do not turn glucose into energy therefore leaving him feeling tired most of the time. He has sharp, needle like pains in his legs. He had a muscle biopsy done in Houston. The doctors told him he would never work again and to go home and get on diability. This can't be all there is. Any articles from medical journals, etc would be greatly appreciated. I really don't know where to begin researching this.

[georger]

Hi Texasmom5

Good for you, you are absolutely right, never accept that there is no treatment. And thanks for supporting your son-in-law; it can be a very anxious time to be diagnosed with TAM and to be told that there is no treatment and nothing is known about it. Neither is true. For a start, have a look at www.tubularaggregatemyopathy.info particularly the "Frequently asked questions" and "Treatment". See the bibliography for medical journal articles - there are quite a few over 40 years. Sorry, the website is not up to date, I have not done any work on it lately.

By the way you say that his muscles do not turn glucose into energy. This sounds like a glycogen storage disorder not TAM. Please keep in touch, we all have much to learn from eachothers' experience.

[texasmom5]

Hi George,
Where do we start to look for answers? The link in your message did not work. I will try it again later. Should we just ask Scott's local doctor to try him on Verapimil? Do we get another "second opinion? Thanks for your reply and encouraging words.

[georger]

Hi Texasmom5

Oops sorry a comma crept into the link, here it is again - www.tubularaggregatemyopathy.info/

I am a bit worried that you are being told that "his muscles do not turn glucose into energy". I have read all the medical articles about TAM that I can and this is not a description of how TAM operates. There are a number of possibilities; maybe the diagnosis of TAM is correct and the doctors gave a wrong explanation? You really need to clarify this because in my opinion the correct diagnosis is crucial.

Just to explain, there are a dozen or so glycogen storage disorders (also called glycogen storage diseases) that operate as you have described. The one that you hear of most commonly is McArdle's Disease. There is a good general article on some of these on eMedicine at www.emedicine.com/derm/TOPIC723.HTM
Of course, whether it is TAM or one of these other myopathies will crucially affect the treatment options available and the prognosis.

Good luck and keep in touch. Your experiences will be valuable to us.

[texasmom5]

Thanks Georger,
I will check these links out and read the medical reports.

[georger]

Have a look at the new thread "Is depression common with TAM?" and contribute if you can. This may be one of the most significant aspects of any chronic progressive disease.

[bobkmass]

This is my first post. I love your great enthusiasm for life on this board! In response to AjayK44 post I too have been told that I have TAM to a small degree. The biopsi was taken in my thigh, but most of my problems are in my calves and upper body. Why not do the biopsy there? Any way, I have been diagnosed with hypokalemic periodic paralysis that caused my TAM. So there are other diseases that could cause your Tam. I agree with georger that you should seek another opinion. I know that is frustating to hear, (i've been to twelve docs in 1 year) but you need to get a diagnosis and a doc you are comfortable with. Right now I am being treated at the Cleveland Clinic Neurology and just had a DNA blood panel done to find if I have the correct diagnosis. I take1000mg of Diamox(carbonic anyhydrase inhibitor) as well as a host of analgesics. This combination doesn't cover the pain very good but I do have more energy than I used to.