Guest guest Posted July 5, 2004 Report Share Posted July 5, 2004 --- Hi RH, Thanks so much for taking the time to write me. When I got up this morning, I was a little down because of all these symptoms and pain and when I saw your reply I was glad someone was thinking about me. Question, what is methyl sulfonyl methane and nadh? I'm dealing with so much medically my head is spinning. I had a muscle biopsy years ago and it didn't show anything. I've been to three MDA clinic and the doctors just scratched there heads. I went to columbia pres. hospital to see a expret in melas to which I have the symptoms and he said I don't have that. So I have no proof of mito, just the symptoms(some not all). I'm dealing with cancer all the time, check ups etc. I see so many specialist a month, and I'm on alot of meds that the cost of being sick is eating up my families money with all these co-pays from $10- 50. I'm suppose to get PT 3X a week @ $15.00 each visit, but I can't afford it. There's so much more I can't even get into all that. When the doctor squeezed the trigger point for fibro, I couldn't believe it hurt sooo bad. I one poit I grabbed her hand. She was shocked and so was I. Fibro is real and painful. It just adds to the pot of symptoms. I hate that some of the medical prof thinks this is not real cvause IT IS! You know when I was pregnant(long ago) I did have better energy. Maybe thats why I kept getting pregnant :-). You know I'm antisocial too. I use to call it shy. I read that low GH makes on antisocial whic would explain my symptoms. I found it very hard when I first join because I don't know how to fit it. Well I gotta go, thanks again for write to me, In , " ohgminion " wrote: > Hi , > > A lot of what you say sounds familiar... > > > > Hi everyone. Sure do miss you all but I've been trying soooo hard > > to get concrete news to finally tell you before I checked back in. > > I did get a DX of fibromyalgia recently. I called my husband and > > said I'm DX with something. I know many of you probaly have it > > too, > > but the muscle pain got so bad I finally went to a rhum. > > Yes, I have a fibromyalgia diagnosis too, but it's more of a side > note than an " okay, so now let's do this " ... > > > As you know I took a hiatus from the group to explore empty sellar > > syndrome which I know I have. > > I read a bit about this: > http://www.ninds.nih.gov/health_and_medical/disorders/emptysella.htm > > It is interesting, in that it may be related to a smaller than normal > pituitary gland. Pituitary gland size increases in pregnancy, and I > am much less symptomatic when pregnant. Of course no doctor can > explain why, the most common guess is due to the increased blood > volume and flow rate. > > > On this support site many suffer our > > symptoms. I found a DR. from one of the members and I paid $500.00 > > to see her, she's an endochrinoligist. She said all my problems > > are from a growth hormone deficenecy so I had a 2 hour blood test > > that said I do. She wants me to get shots of GH. My insurane > > company just denided it. > > Interestingly, there is some research that myasthenia gravis (MG) is > related to a growth hormone deficiency or " immunity " . I was > previously diagnosed with MG, but they " disproved " it. > > > I'm not really convinced this is my problem. She said the reason I > > have the strokelike episodes is because I don't have enough GH. > > This could be true. > > Not enough GH can mean pretty much everything doesn't work right, so > similar to a direct mitochondrial problem... > > I have a cousin who is a little person (about 3'6 " ), and she > supposedly has a " rare " form of dwarfism, but I haven't gotten > details from her as to whether the mitochondria might be involved. > > > Many of my symptoms are fibromyalgia, but I still seem to have the > > mito symtoms too. > > As I mentioned, I have both. I find the fibromyalgia type symptoms > respond to taking methyl sulfonyl methane, especially the kind that > includes Molybdenum (an essential mineral). I went to the emergency > room with severe pain once, and the narcotics didn't help, finally I > found methyl sulfonyl methane (with molybdenum) and I have a good > amount of relief from pain. > > > My symptoms have increased and I have new problems too. My epstein > > barr count is up, > > I haven't had repeats of mine, but it was quite high (the inactive, > previous infection kind, not the active kind). > > > I have a kidney infection,servere muscle pain, > > vision problems, servere stomach distress, servere pain in my > > shoulders and loss of strenght in them, etc. I can do very little > > without getting very tired so I go out very little. > > Have you tried NADH (Enadalert brand)? They have sublingual tablets, > and NADH is another part of the workings of the mitochondrial. > Between taking NADH and being in ketosis from a high protein, high > fat, low carb diet, I'm feeling mostly okay. But I still have to be > careful. > > > I do have a new attidude though about being chroniclly ill. I > > joined rest ministries, a support site for the chron. ill and the > > info and books I read really helped me so much. The church hurt > > and loss of friend hurt is ok now. It's a part of being chron. ill. > > I socialize when I can and don't sweat it anymore when I can't. > > Lucky me, I'm antisocial. I have a very supportive close family, so > that helps. They called me a hypochondriac when I was younger, but > the few I am still close to are really great helps. > > > I've also learn how to be in a web support group without causing a > > stir. Every group has something and I understand what I'm looking > > for and understand how far to go with comments and ideas. It's a > > learning thing. Many people don't write and just lurk for this > > reason. I'm glad you all really are nice and liked me. I've come > > to realize that this is a truly caring group and very smart and > > devoted people are here. > > Don't let people make you feel bad. We're all learning, and I > challenge anyone to always say and do the right thing. " It's better > to have a plan, even a bad plan, than no plan at all. " > > > If anyone has any thoughts about my complex and confusing going in > > circles symptoms, please share. > > Since I am someone with some concrete answers, I'll share a bit. > When my labs came back and showed: definite mitochondrial defects > and specifically lack of activity of Complex I (zero, nada, zilch), > where normal my age was 100 and normal over 50 years old was 100. I > was shocked I wasn't dead already, and figured my body was somehow > compensating. > > My 3 year old son is going through the process of diagnosis now. > > > I hope you didn't forget me, > > > > No, we didn't We all go through stages of dealing with this, I > think if you could work with someone in terms of trying different > aspects of the mito cocktail, you might find some relief. Then > again, I had some severe side effects from trying a few things on > the " mito cocktail " list, so maybe you could go to a MDA clinic to > see a mito specialist to guide you. > > Good to hear from you again, ! > > Take care, > RH Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 5, 2004 Report Share Posted July 5, 2004 > > > Hi everyone. Sure do miss you all but I've been trying soooo > hard > > > to get concrete news to finally tell you before I checked back > in. > > > I did get a DX of fibromyalgia recently. I called my husband > and > > > said I'm DX with something. I know many of you probaly have it > > > too, > > > but the muscle pain got so bad I finally went to a rhum. > > > > Yes, I have a fibromyalgia diagnosis too, but it's more of a side > > note than an " okay, so now let's do this " ... > > > > > As you know I took a hiatus from the group to explore empty > sellar > > > syndrome which I know I have. > > > > I read a bit about this: > > > http://www.ninds.nih.gov/health_and_medical/disorders/emptysella.htm > > > > It is interesting, in that it may be related to a smaller than > normal > > pituitary gland. Pituitary gland size increases in pregnancy, and > I > > am much less symptomatic when pregnant. Of course no doctor can > > explain why, the most common guess is due to the increased blood > > volume and flow rate. > > > > > On this support site many suffer our > > > symptoms. I found a DR. from one of the members and I paid > $500.00 > > > to see her, she's an endochrinoligist. She said all my problems > > > are from a growth hormone deficenecy so I had a 2 hour blood > test > > > that said I do. She wants me to get shots of GH. My insurane > > > company just denided it. > > > > Interestingly, there is some research that myasthenia gravis (MG) > is > > related to a growth hormone deficiency or " immunity " . I was > > previously diagnosed with MG, but they " disproved " it. > > > > > I'm not really convinced this is my problem. She said the > reason I > > > have the strokelike episodes is because I don't have enough GH. > > > This could be true. > > > > Not enough GH can mean pretty much everything doesn't work right, > so > > similar to a direct mitochondrial problem... > > > > I have a cousin who is a little person (about 3'6 " ), and she > > supposedly has a " rare " form of dwarfism, but I haven't gotten > > details from her as to whether the mitochondria might be involved. > > > > > Many of my symptoms are fibromyalgia, but I still seem to have > the > > > mito symtoms too. > > > > As I mentioned, I have both. I find the fibromyalgia type > symptoms > > respond to taking methyl sulfonyl methane, especially the kind > that > > includes Molybdenum (an essential mineral). I went to the > emergency > > room with severe pain once, and the narcotics didn't help, finally > I > > found methyl sulfonyl methane (with molybdenum) and I have a good > > amount of relief from pain. > > > > > My symptoms have increased and I have new problems too. My > epstein > > > barr count is up, > > > > I haven't had repeats of mine, but it was quite high (the > inactive, > > previous infection kind, not the active kind). > > > > > I have a kidney infection,servere muscle pain, > > > vision problems, servere stomach distress, servere pain in my > > > shoulders and loss of strenght in them, etc. I can do very > little > > > without getting very tired so I go out very little. > > > > Have you tried NADH (Enadalert brand)? They have sublingual > tablets, > > and NADH is another part of the workings of the mitochondrial. > > Between taking NADH and being in ketosis from a high protein, high > > fat, low carb diet, I'm feeling mostly okay. But I still have to > be > > careful. > > > > > I do have a new attidude though about being chroniclly ill. I > > > joined rest ministries, a support site for the chron. ill and > the > > > info and books I read really helped me so much. The church hurt > > > and loss of friend hurt is ok now. It's a part of being chron. > ill. > > > I socialize when I can and don't sweat it anymore when I can't. > > > > Lucky me, I'm antisocial. I have a very supportive close family, > so > > that helps. They called me a hypochondriac when I was younger, > but > > the few I am still close to are really great helps. > > > > > I've also learn how to be in a web support group without causing > a > > > stir. Every group has something and I understand what I'm > looking > > > for and understand how far to go with comments and ideas. It's > a > > > learning thing. Many people don't write and just lurk for this > > > reason. I'm glad you all really are nice and liked me. I've > come > > > to realize that this is a truly caring group and very smart and > > > devoted people are here. > > > > Don't let people make you feel bad. We're all learning, and I > > challenge anyone to always say and do the right thing. " It's > better > > to have a plan, even a bad plan, than no plan at all. " > > > > > If anyone has any thoughts about my complex and confusing going > in > > > circles symptoms, please share. > > > > Since I am someone with some concrete answers, I'll share a bit. > > When my labs came back and showed: definite mitochondrial defects > > and specifically lack of activity of Complex I (zero, nada, > zilch), > > where normal my age was 100 and normal over 50 years old was 100. > I > > was shocked I wasn't dead already, and figured my body was somehow > > compensating. > > > > My 3 year old son is going through the process of diagnosis now. > > > > > I hope you didn't forget me, > > > > > > > No, we didn't We all go through stages of dealing with this, I > > think if you could work with someone in terms of trying different > > aspects of the mito cocktail, you might find some relief. Then > > again, I had some severe side effects from trying a few things on > > the " mito cocktail " list, so maybe you could go to a MDA clinic to > > see a mito specialist to guide you. > > > > Good to hear from you again, ! > > > > Take care, > > RH Quote Link to comment Share on other sites More sharing options...
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