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Post by bobkmass on Jun 11, 2009 19:38:41 GMT
While I'm on a roll I have a problem with pain. I now take 60mg of time released morphine(KADIAN) 2 times a day and 10mg percocet 4 times per day. But I still have unbearable pain. I want to try another approach to manage this. I' m hoping my new friends will have more ideas than just another pill (what my doc recommends).
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Post by Pete on Jun 15, 2009 1:33:11 GMT
Welcome bobkmass, good to hear from you. Not good to hear that you have severe intractable pain. This is a very very difficult one as you are already on some pretty savage pain meds. The only suggestion that I have is hypnosis. I was very sceptical but went to a highly skilled practitioner (who was also a doctor) who found that I am a good subject for hypnosis. He taught me self-hypnosis and I was able to deal with the worst pain which was an aching type. The other type of pain that I get is muscle soreness and hypnosis had no effect on this. Probably just as well because this is a message that I have been too active, just like a normal healthy person but provoked by a very much lower level of activity. This muscle pain from exercise is characteristic of TAM because it attacks the muscles ability to recover from exercise.
The thigh biopsy (the quadriceps muscle on the front of the thigh?), it was explained to me is usually done because this is a safe place to hack out a small chunk.
You say that hypokalemic periodic paralysis caused your TAM. My understanding is that these are separate and distinct disorders but both characterised by the presence of tubular aggregates. Confusion on this subject is not helped by incorrect info on the web, particularly on the Askville site. To explain, tubular aggregates have been found in the skeletal muscle of folk with a wide range of different diseases and some apparently healthy people. The symptoms of HPP and TAM are quite different and the treatment is too. Acetazolamide (Diamox) is a recognized treatment for HPP but I do not know that it does anything for TAM. The genetic basis for HPP is known but not for TAM, so your DNA test may confirm HPP but not TAM.
Good luck and let's know how you go.
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Post by bobkmass on Jun 27, 2009 11:16:32 GMT
Thanks for the clarification. I'm still waiting for the DNA test results could take up to four weeks. That's the story of my life. I hope everyone feels great today!!!
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Post by Pete on Jun 28, 2009 12:43:14 GMT
I wouldn't like to sound like a grumpy old man but I cannot see the police waiting 4 weeks for DNA evidence. Possibly the complexity differs. AS you can see from lsmith's post on another thread "Meds 2009 -some relief, better than misdiagnosis" it can be a long road to the correct diagnosis. Good luck and I hope you get a result soon.
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Post by larrys on Oct 13, 2010 16:11:50 GMT
Hello everyone. My name is Larry and while I don't have a confirmed diagnosis of TAM I think I am headed in that direction. I had a muscle biopsy at Johns Hopkins in June and they found type II myofibers with tubular aggregates. From what I have read, that is a pretty good indication I have TAM.
For me, the process started almost four years ago with an increasing intolerance to exertion. I'm not really talking exercise, just day to day activity. At first I noticed I had difficulty standing for any period of time. That progressed to difficulty walking any distance. Next my grip was affected and then an increasing heaviness in my arms.
As seems the case with everyone else stories, doctors were at a loss to find a cause. At first I was diagnosed with cardiomyopathy. The did an angyogram fully expecting to find some sort of vascular blockage, but came up empty. After a year of blood pressure medicine and visits to the cardiologist I was no better.
Next came the rhumatologist. He was positive the degeneration in my neck was the cause. He prescribed steroid injection in my neck. He said if it helped it would confirm his diagnosis. The injection did help, I got one week of normal, but then it quickly faded. Follow-up visits he said it was wide spread damage in the vertebrae and not considered severe enough to be operated on. And so it went.
Since then I've seen other doctors, come close to having neck surgery, almost gave up, and finally went back to the doctor who did the spinal steroid injection. See, he didn't want to do the injection. He said I did have degeneration but that my spinal cord was not deformed. I went ahead with the injection at the time because I had no other choice but to start all over.
So I had some more tests and he suspected that I had a glycogen storage disorder. He said my back was a mess (6 herniated disks, 5 inward against the spinal cord, with degeneration at the neck and lower back) but he didn't feel it was the cause. He sent me to Johns Hopkins. They did a very extensive exam and took tons of blood to test. Hopkins ultimately did a biopsy where they found type II myofibers with tubular aggregates. They sent these findings with some of the biopsied material to a lab in Boston where according to their test it was normal.
As you all have said, you have to do your homework and I sent an email to the Beggs Lab which specializes in Nemailine Myopathy. Nemaline is characterized by rod formation in the muscle, but as they explained to me, tubular aggregates are different and that they are not well understood.
Since discovering this site and reading some of your stories I am returning to Johns Hopkins to ask some specific questions. The appointment is to re evaluate my spinal MRIs, but I suspect the issues with my back are due to weakness in the skeletal muscles. And now that I have discovered TAM, I will ask about that.
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Post by Craig Lane on Nov 3, 2010 20:02:38 GMT
Hi Larry,
Welcome to our site. I note that the biopsy sample sent to another lab came back as normal. I am informed that the preservation method used to transport tissue samples destroys the evidence. This came from Prof. Wiles Cardiff University Hospital (Wales). My request to be treated with the same material got me nothing but a "Paddington stare."
It is a long road to diagnosis but, whatever the result it needs to be the right one. As much as we all need to know it is importent to hold out for the right diagnosis.
Good luck.
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Post by larrys on Jan 30, 2011 16:47:56 GMT
Hi Larry, Welcome to our site. I note that the biopsy sample sent to another lab came back as normal. I am informed that the preservation method used to transport tissue samples destroys the evidence. This came from Prof. Wiles Cardiff University Hospital (Wales). My request to be treated with the same material got me nothing but a "Paddington stare." It is a long road to diagnosis but, whatever the result it needs to be the right one. As much as we all need to know it is importent to hold out for the right diagnosis. Good luck. Hello again. Well, after undergoing sveral more EMG's and what is called a single fiber EMG I know have a confirmed diagnosis of TAM. It seems like it is a process of elimination and in my case, tubular aggregates are all they can find wrong, hense the diagnosis. My doctor put me on a course of prednisone 10mg 4 times a day for 10 days, then 10mg 3 times a day for 10 days, then 2 times a day for 10 days and finally once a day for 10 days. I'm on day 7 of 10mg 3 times a day. I have experienced some benefit which seemed to peak on the 8th day of the 10mg 4 times a day, but there has been some lingering benefit. I have to agree with the person who said prednisone must also mask the pain, because I find I can easily overdo on prednisone and then find myself with muscle spasms and shooting pains. Not fun. I am not new to this rare disease process since I've been dealing with this since 2005, but I'm finding research on TAM extreemly frustrating. Is it really so rare there isn't much out there? I'd love to connect with anyone out there who is dealing with this so I can learn as much as possible. I'm in my late 50's and really wanting to get some idea of what life in the future holds so I can try and plan ahead. |
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Post by AjayK44 on Feb 27, 2014 15:43:12 GMT
Just had a reminder as have not accessed the forum for a very long time. My symptoms were eventually diagnosed as not being caused by TAM but by a mental health condition that caused my brain to imitate feelings and pain in my body that were not really there. I am still under psychiatric care for this.
I wish all other forum members all the best and hope that some day soon TAM will be taken more seriously and a positive way forward evolved.
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Post by Craig Lane on Feb 28, 2014 10:51:08 GMT
Hi AjayK44,
Thanks for your update. It is a positive thing that you have had a definitive and correct diagnosis. I wish you all the best and a speedy recovery.
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Post by larrysc on Feb 24, 2015 15:32:15 GMT
Hello again everyone, and those of you who are new to the forum. I am sorry you are here. I was here back in 2010-2012, but lost contact since then. I was registered back then as larrys so you might see the story of my diagnosis under that name. I think I will try to do some catching up in this post although I spent a lot of last night reading posts.
Since my diagnosis, I have moved to South Carolina to be close to family and for the warmer weather. The joy I get from being with my grandson keeps me going. So, as far as introductions, I am in my 4th or 5th year since my TAM diagnosis and of course like so many of you it took 3 years to get a firm diagnosis. In my case, I was one doctor's visit away from having a cervical spine fusion. At that juncture the doctor's were sure an impingement on my spinal cord was responsible for my symptoms. I still wonder sometimes if it could have anything to do with my condition, but the doctors I see now don't think so. If you've ever moved and had to look for doctors you know how difficult that can be. I was fortunate and my daughter-in-law suggested her doctor. Doctor Pollard is a GP, or Internist I think they're called. She agreed to act like my medical "coach", so she helps me keep track of what's going on with me and monitors me pretty closely. She and I have both tried to find a doctor familiar with TAM within 200 miles of Greenville, but have had no luck, but on the positive, she has sent me to the best pain management place here as-well-as some other fine doctors for other health related issues. Working with the pain management doctor & Dr. Pollard, we have discovered I am extremely sensitive to opid pain meds. I've experienced some pretty awful side affects and even got sent to the hospital for breathing problems from the Fentanyl patch. I've been though many, many different pain meds. Some worked for awhile, but as they built up in my body I would have a reaction to them at which point I was left with a choice, try another medicine or reduce my activity level and therefore my dosage. It got so crazy, at one point I stepped away from pain meds all together. That was an extremely difficult time and made me realize just how bad off I really was. For now, we are settled on Morphine, 30mg 3 times a day. I'd been taking it twice a day and doing okay, but the pain began to build up again and I now have to take it at night sometimes. In the last few weeks I've also had to start supplementing the Morphine with Tylenol and Motrin together. During the day, I take some kind of pain meds every two hours. I also take Verapamil, for blood pressure & TAM, but I remember reading a followup on the "I can Walk" article that said Verapamil was just masking the pain & muscle damage. As I understand it, the calcium is like the plug on an electrical cord (your nerve fiber) and that too much, or too little messes with the connection. It really has nothing to do with the actual muscle cells which of course is where our problems lie. I was surprised to see all the recent posts about Verapamil and was wondering if something has changed in that regard.
I am fortunate in that I can still walk although not very much. I find I have a limited amount of up time and use my power-chair to help pick and choose where I use it, like going back and forth to the bathroom or kitchen or working on my hotrod. I still hope to one day finish the custom hotrod I started 7 years ago, before TAM reared it's ugly face. Back then, it looked like a 6 month undertaking.
I also check in on the French DNA marker research being done in France. I have five generations currently living and thought that would be of great help to them, but I never heard back from them. I would like to know more about the marker and wether my children or grandson could have it.
Well I will sign off for now. I don't know how I rank in the longevity of having TAM, but if there are any questions you have I will gladly share my experiences. In closing I would say, don't get so wrapped up in TAM that you forget there are other issues you could have (I also have peripheral neuropathy in my feet) and by all means don't forget about the possible side affects of the medications you are taking, not to mention the interaction between those medications.
Regards,
Larry
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Post by Craig Lane on Feb 24, 2015 20:07:04 GMT
Welcome back Larry. Glad you found us again.
Your experiences over the years will be invaluable. It sounds as if you're move to be close to family has be beneficial in more ways than one.
Good luck finding a doctor familiar with TAM, I'm not sure such a person exists. Maybe when someone rich and famous is diagnosed the world will be made aware, until then I guess it's up to us to pool our experiences and be there for each other.
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Post by Craig Lane on May 9, 2015 10:35:22 GMT
Welcome to Martyjo74
No need to thank me, this site is a community effort inspired by Georger. Hope you can share your experiences with us on the forum. I too along with many of us struggle with the keyboard. Some use voice to text software I found typing in a text document like Microsoft word or notepad and when finished cut and paste to forum.
Your Doctors prescriptions for Soma and Norco sound interesting I wonder if anyone else has experience of these drugs.
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