tinkerbella Posted April 16, 2011 Report Share Posted April 16, 2011 Saw my doctor this week and we talk about how I've gone down hill since my dx. He brought up my original level 2 stress test a MassGeneral that showed neuro muscular disease. We have ruled out the common ones and now after the extreme fatigue and getting sick he want me to go back to MassGeneral and where they are doing work on Mitochondrial disease. He mentioned a biopsy...Now I did have one back in 07 at the Brighman and Woman's showing a fibro muscle, can your muscle change in four years due to viruses? Also, my doctor feels MG is doing so much work in this area it is worth looking at. Do others have this here also? He said it symptoms are very similar to Pots. He also said there would be a bit of a waiting period before I could get in.My PC Is also rechecking Lyme, and a whole bunch of blood tests and sending me to another rhummy for all the joint pain. She would like to give me a better quality of life.Thanks for any help. x'sBellamia ~ Quote Link to comment Share on other sites More sharing options...
sue1234 Posted April 16, 2011 Report Share Posted April 16, 2011 I think it is worth doing. You have been so disabled by all this that I think another relook at it all is great! Def keep us posted on what you find out regarding the mito issue. That could be useful info for others here. It's great when a doctor really wants to think and help! Quote Link to comment Share on other sites More sharing options...
juliegee Posted April 16, 2011 Report Share Posted April 16, 2011 I agree with. Sue. YOur doctors sound great- very on top of things. I'd follow through with their recommendations. What DXes do you currently have? I know you have a lot of allergy-type symptoms and have seen (or currently see) Dr. Castells at B & W. I'm sending good thoughts and prayers your way, Bella!Julie Quote Link to comment Share on other sites More sharing options...
tinkerbella Posted April 16, 2011 Author Report Share Posted April 16, 2011 Lately, I just can't stop getting sick and the fatigue is so bad I'm in bed all of the time. I have Fibro, CFS, They always question lupus or sojourns syndromes. Some mast cell markers, anemic, left sided body weakness, ANA positive, HR is getting out of control too often on meds along with BP. Could be my body is sick and try to work harder to survive. I could sit up for short periods a year ago. Now if I do I sweat like crazy and get High BP. My whole body is mixed up. Being so out of breath even at rest is the biggie. Hand writing changes, tremors and more.Thank Julie for your support ~Bellamia ~ Quote Link to comment Share on other sites More sharing options...
juliegee Posted April 16, 2011 Report Share Posted April 16, 2011 Forgive my questions, Bella. What mast cell markers? What meds are you on?Hugs-Julie Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted April 16, 2011 Report Share Posted April 16, 2011 Now why can't I find a Doctor like this who wants to dig deeper? I told the last POTS Dr. I saw that I was there to find out what might be causing my POTS and he said "if I knew I'd win the Nobel Peace Prize." I brought a whole list of things to explore and never even had a chance to go over it with him. One of the things on my list: mitochondrial disorder. Yes, definitely do whatever work up this Doctor wants. It's great that he wants to explore these things with you! Good luck and please let us know what happens. Quote Link to comment Share on other sites More sharing options...
tinkerbella Posted April 17, 2011 Author Report Share Posted April 17, 2011 I'm very blessed to have my PC , my cardio and neuro. My cardio spends so much time with me and plans for me to come in early just to have enough time with me due to my complicated case. Julie, I take allegra 24/7 oral gastragrom, tagament, proair only when I have to as it makes me tachy, flonase. I really liked the gastrocrom cream, but insurance won't pay for it. Right now I need to start the oral solution all over again as being sick with the flu, they advised me to now start it very , very slow. The markers are blood levels as I don't have all of them. But, the one that can turn into cancer is climbing so they decided to treat with oral gastrocrom. I used to take atarax, but it wore off after years of use. What do you take?Allergy test wise I don't show anything, but allergic to a lot of meds, latex and who knows what else? I used to go to the er and they would draw on my back and I would welt. I think I'll change my name to complicated Bellamia ~ Quote Link to comment Share on other sites More sharing options...
tinkerbella Posted April 17, 2011 Author Report Share Posted April 17, 2011 Naomi~Can you go out of state with your insurance for another opinion? I'm in MA and we have some great docs.Bellamia~ Quote Link to comment Share on other sites More sharing options...
juliegee Posted April 17, 2011 Report Share Posted April 17, 2011 Bella-So happy you have such great proactive docs. I know you don't think so right now, but you are very lucky...Mixed blessing. I'm sure you'd rather not need them . Sounds like stirred up mast cells could be causing a lot of your stuff, but your docs have got you on great meds to try to stabilize them, gastrocrom, etc. I'd check out the mito thing. It is one known cause of POTS. Keep us posted on what you learn. Prayers still coming your way!Hugs-Julie Quote Link to comment Share on other sites More sharing options...
sue1234 Posted April 17, 2011 Report Share Posted April 17, 2011 Bella, you mentioned anemia. Have they gotten that resolved?? Anemia can affect your whole body. If your body is not getting enough oxygen via red blood cells, then it will speed the heart up, especially with ANY activity--even just trying to sit up! With the lower oxygen, your autonomic system is going to kick in to help get more oxygenated blood around. And, of course, the low energy issue might be due to it. And, anemic people can't fight of illness like a non-anemic person. Definitely get that resolved, then relook at your symptoms!! Quote Link to comment Share on other sites More sharing options...
tinkerbella Posted April 17, 2011 Author Report Share Posted April 17, 2011 Thanks Julie and Sue, I'm very blessed and thankful for all my care takers. I'm working on my iron stores and have been for 2 years when they were 4. My neuro explained to me the importance and the relationship to the heart working properly. I'll keep you all posted, as we begin this new adventure. Thanks again for all of your kind words and support.Bellamia ~ Quote Link to comment Share on other sites More sharing options...
comfortzone Posted April 18, 2011 Report Share Posted April 18, 2011 I came upon this article - might not be much help - but for what it's worth:http://utnews.utoledo.edu/index.php/12_10_2010/utmc-researchers-find-link-between-mitochondrial-cytopathies-and-autonomic-nervous-system-functionBlessings to you! Quote Link to comment Share on other sites More sharing options...
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