Guest guest Posted November 14, 2004 Report Share Posted November 14, 2004 , , Janet & Sunny, I want to thank everyone for the kind thoughts and suggestions following my posting. I'm located in the Los Angeles area and my current testing is being conducted at the UCLA Neuromuscular disease department. My primary doctor is a new resident but my case has been so unique that both Dr. Perrin Plenniger and Dr. Graves who are professors with the neuromuscular disease clinic have taken an active role in my case. In discussions with my doctors, mitochondrial disease is a major suspicion which is why they are going ahead with the muscle biopsy. Although they are leaning in this direction, other tests have not quite been in line with expectations. Lactic acid remains normal – even with the stress test. I can relate to some of the other posts concerning the treadmill test. They did mine on a bicycle to facilitate easier blood sampling but I was pretty much wiped out when finished. My legs were shaking uncontrollably and I could barely support my own weight afterwards. I'm probably in the early stages of whatever is going on. Whatever it is, the muscle weakness and peripheral neuropathy symptoms seem to be progressing in synch with each other. I think this is what is confusing my case so much. They have tested me 4 separate times for diabetes in the past year and I pass with flying colors every time. The glucose tolerance test does not even put me in the borderline category. UCLA seemed pretty thorough on the lab work racking up over $7,000 worth of blood tests testing for various antibodies, tropical diseases and parasites. I seem to recall the doctor mentioning tests for toxins as well but quiet truthfully, I think that's a remote chance since I've never had any contact with those sorts of materials. I work in a pretty benign environment working at a corporate office building. My company is a food manufacturer so our hazards (to our waistline) seem to be limited to chocolate and tollhouse cookies. Fortunately, I'm not with an HMO so my doctors have had a lot of latitude providing a multitude of tests with quite a few difference specialists. The extra money I paid to upgrade my health insurance has been worth every penny. I only did it for my wife not thinking I would be the one to start falling apart… Thanks again for all the support. I will keep everyone posted as to the results of the upcoming biopsy. In the meantime, I'm learning a lot from reading all the information on this site. Regards, Bob Valencia, CA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 2004 Report Share Posted November 15, 2004 Dear Bob, Thank you for keeping us posted. Again, I am sorry you are going through such a bad time, and I hope they can find something to explain/treat your symptoms. It sounds like you are very level-headed, and will continue to persue this. Stay optimistic and positive in your attitude. The best of luck in finding an answer. On the toxins/environment, my personal experience has been with two things that bother me greatly. It took me over 20 years to learn about a certain mold's effect on me. Three time over that span I got extremely ill- to the point of just wanting to die, without any explanation, and got better spontaneously. Each time I was in a very old building, with mustly odors. Each time I got better when I left the places. Still didn't make a connection. It took a fourth time, in my own basement, clearing out some old tapestry sofa fabric to discover the connection. I handled the fabric to see if it was still good, sniffed it, to see if it had an odor. The white stuff on it (mold, of course) did not give me any pause. I never thought about what I was doing. I immediately got iill to my stomach, light headed, etc. I literally ran outside to the fresh air. Felt better almost immediately. Bingo, the light went on. The other three times I had been sleeping in musty, old historic hotels in Europe, cool rainy weather, etc. It seems that there are only a few types of mold that give some people serious problems. I absolutely respect that now, and have had no other incidences. And believe, me, I rejected that connection at first. Thought back over my experiences, did some reading on it, and now I am convinced. Another sensitivity I have is to formaldehyle. Again, several exposures to it - new carpeting, new kitchen cupboards - have taught me that I am sensitive to it. Atypical allergic reactions, headache, fatigue, mental fog, etc. I am very careful with this now too. I only mention this because we can have idiopathic (and severe) reactions to things in our environment that do not bother other people. and the environment can seem " normal " . A substance like mold or formaldehyde can be toxic to some people in lower exposures than normal. Mainstream medicine does not pay too much attention to it. Just something for you to think about - and i know it is a long shot, to say the least. Again, I wish you luck in finding answers. Regards Sunny > > > , , Janet & Sunny, > > I want to thank everyone for the kind thoughts and suggestions > following my posting. I'm located in the Los Angeles area and my > current testing is being conducted at the UCLA Neuromuscular disease > department. My primary doctor is a new resident but my case has been > so unique that both Dr. Perrin Plenniger and Dr. Graves who > are professors with the neuromuscular disease clinic have taken an > active role in my case. > > In discussions with my doctors, mitochondrial disease is a major > suspicion which is why they are going ahead with the muscle biopsy. > Although they are leaning in this direction, other tests have not > quite been in line with expectations. Lactic acid remains normal – > even with the stress test. I can relate to some of the other posts > concerning the treadmill test. They did mine on a bicycle to > facilitate easier blood sampling but I was pretty much wiped out when > finished. My legs were shaking uncontrollably and I could barely > support my own weight afterwards. > > I'm probably in the early stages of whatever is going on. Whatever > it is, the muscle weakness and peripheral neuropathy symptoms seem to > be progressing in synch with each other. I think this is what is > confusing my case so much. > > They have tested me 4 separate times for diabetes in the past year > and I pass with flying colors every time. The glucose tolerance test > does not even put me in the borderline category. > > UCLA seemed pretty thorough on the lab work racking up over $7,000 > worth of blood tests testing for various antibodies, tropical > diseases and parasites. I seem to recall the doctor mentioning tests > for toxins as well but quiet truthfully, I think that's a remote > chance since I've never had any contact with those sorts of > materials. I work in a pretty benign environment working at a > corporate office building. My company is a food manufacturer so our > hazards (to our waistline) seem to be limited to chocolate and > tollhouse cookies. > > Fortunately, I'm not with an HMO so my doctors have had a lot of > latitude providing a multitude of tests with quite a few difference > specialists. The extra money I paid to upgrade my health insurance > has been worth every penny. I only did it for my wife not thinking I > would be the one to start falling apart… > > Thanks again for all the support. I will keep everyone posted as to > the results of the upcoming biopsy. In the meantime, I'm learning a > lot from reading all the information on this site. > > Regards, > > Bob > Valencia, CA > > > > > > > > > > Medical advice, information, opinions, data and statements contained > herein are not necessarily those of the list moderators. The author of > this e mail is entirely responsible for its content. List members are > reminded of their responsibility to evaluate the content of the > postings and consult with their physicians regarding changes in their > own treatment. > > Personal attacks are not permitted on the list and anyone who sends > one is automatically moderated or removed depending on the severity of > the attack. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2004 Report Share Posted November 16, 2004 Dear Bob, Thanks for the info on your pursuit of a diagnosis. It certainly sounds as if you have gotten the attention of some very competent physicians. I also loved your sense of humor about your " hazards " at work! I think it may be important to start on some supplements soon (unless you are scheduled for a muscle biopsy). I believe that my starting on Carnitor and CoQ10 in 1998, right after a provisional diagnosis, slowed the progression of symptoms. I wish you answers---and solutions. Best of luck! Sincerely, S. PA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2004 Report Share Posted November 16, 2004 Dear Bob, Thanks for the info on your pursuit of a diagnosis. It certainly sounds as if you have gotten the attention of some very competent physicians. I also loved your sense of humor about your " hazards " at work! I think it may be important to start on some supplements soon (unless you are scheduled for a muscle biopsy). I believe that my starting on Carnitor and CoQ10 in 1998, right after a provisional diagnosis, slowed the progression of symptoms. I wish you answers---and solutions. Best of luck! Sincerely, S. PA Quote Link to comment Share on other sites More sharing options...
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