Guest guest Posted July 23, 2002 Report Share Posted July 23, 2002 LOL, I already have ... Chronic Fatigue Syndrome and Fibromyalgia. I even did the tender point test on myself! Bad part was I didn't charge myself enough or even think to send a bill to Tri-Care. Think they would buy it? Actually, I still think it's mito related. Complex I Deficiency if I fit with all the symptoms, which I believe I have over time. Either that or Complex III Deficiency. Or somewhere close. If the biopsy going to Boston doesn't confirm something, the next step is to have a live tissue study done at a different lab. That's even more obscure than general mito testing, which Walter didn't do at all. Ed > > Hi Ed... > > I have to wonder if Alabama had a good lab tech there that was able to > diagnose myositis from your biopsy. It's my understanding that it's > not an easy test to do nor to identify. I hope this new doctor will > be able to find out what you have. If he can't.... I think you should > go into the medical field and diagnose yourself.... :~) > Hope you're feeling better today... > Take care > Vicki Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2002 Report Share Posted July 24, 2002 You know, Ed, maybe you could write a letter. At first, in the military, I was thinking there could be repurcusions and I don't want to see that happen. But you could do a very " gentle " letter in which you point out various things...about your WR stay...about how your case is not progressing but your " illness " is...and end off with a " rally around the flag, boys. " I dunno...I want to do something for ya... I hate thinking you're gonna have to deal with Tri-Care all by yourself! Hugs, Lynn --- bmcm_eod wrote: > LOL, I already have ... Chronic Fatigue Syndrome and > Fibromyalgia. I > even did the tender point test on myself! Bad part > was I didn't > charge myself enough or even think to send a bill to > Tri-Care. Think > they would buy it? > > Actually, I still think it's mito related. Complex > I Deficiency if I > fit with all the symptoms, which I believe I have > over time. Either > that or Complex III Deficiency. Or somewhere close. > If the biopsy > going to Boston doesn't confirm something, the next > step is to have a > live tissue study done at a different lab. That's > even more obscure > than general mito testing, which Walter didn't > do at all. > > Ed > > > > > > Hi Ed... > > > > I have to wonder if Alabama had a good lab tech > there that was able > to > > diagnose myositis from your biopsy. It's my > understanding that > it's > > not an easy test to do nor to identify. I hope > this new doctor > will > > be able to find out what you have. If he > can't.... I think you > should > > go into the medical field and diagnose > yourself.... :~) > > Hope you're feeling better today... > > Take care > > Vicki > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2002 Report Share Posted July 24, 2002 How about going to one of the Mayo clinics that are so well acclaimed?? Dawn bmcm_eod wrote: > LOL, I already have ... Chronic Fatigue Syndrome and Fibromyalgia. I > even did the tender point test on myself! Bad part was I didn't > charge myself enough or even think to send a bill to Tri-Care. Think > they would buy it? > > Actually, I still think it's mito related. Complex I Deficiency if I > fit with all the symptoms, which I believe I have over time. Either > that or Complex III Deficiency. Or somewhere close. If the biopsy > going to Boston doesn't confirm something, the next step is to have a > live tissue study done at a different lab. That's even more obscure > than general mito testing, which Walter didn't do at all. > > Ed > > > > > > Hi Ed... > > > > I have to wonder if Alabama had a good lab tech there that was able > to > > diagnose myositis from your biopsy. It's my understanding that > it's > > not an easy test to do nor to identify. I hope this new doctor > will > > be able to find out what you have. If he can't.... I think you > should > > go into the medical field and diagnose yourself.... :~) > > Hope you're feeling better today... > > Take care > > Vicki > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2002 Report Share Posted July 24, 2002 Ed, This is from Sue, in Mobile. I haven't posted lately but I try to keep up. I know the battle first hand about the labs always coming back normal or low. I've also had such a bad summer. Chest muscles are so weak that breathing is badly effected. I'm trying to get over pneumonia, but having problems getting this flair under control. Drs. are talking about another plasmaphoresis followed by IViG treatments. Have you thought about our University of South Alabama here in Mobile. I, like you, saw many, many doctors over twenty plus years before I finally got a doctor right here in Mobile who diagnosed my Behcet's disease. His name is Dr. ph Michalski, . Sect.'s name is Barbara Stacey. Talk to her and tell her Sue Shirah recommended Dr. Michalski. I don't know if he is taking new patients, but I'm pretty sure he will if you tell Barbara I said to call. Dr. Michalski is a rheumatologist. Dr. ph Hamilton, 251-660 -5108, is the Neurologist here that follows my DM. He is also with USA. He, also, has a long waiting list but I don't see him as often as Dr. Michalski so I don't know his secretary. But, he's great! They both don't give up looking for answers and they are willing to take risks to provide treatments. Mobile is close to you, so I strongly encourage you to consider this. Lots of hugs to you and to , Sue Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2002 Report Share Posted July 24, 2002 I'll probably end up doing that. Ed > > > > > > Hi Ed... > > > > > > I have to wonder if Alabama had a good lab tech there that was able > > to > > > diagnose myositis from your biopsy. It's my understanding that > > it's > > > not an easy test to do nor to identify. I hope this new doctor > > will > > > be able to find out what you have. If he can't.... I think you > > should > > > go into the medical field and diagnose yourself.... :~) > > > Hope you're feeling better today... > > > Take care > > > Vicki > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2002 Report Share Posted July 25, 2002 I don't blame you. Certainly they can come up with something.... Dawn bmcm_eod wrote: > I'll probably end up doing that. > > Ed > > > > > > > > > > Hi Ed... > > > > > > > > I have to wonder if Alabama had a good lab tech there that was > able > > > to > > > > diagnose myositis from your biopsy. It's my understanding that > > > it's > > > > not an easy test to do nor to identify. I hope this new > doctor > > > will > > > > be able to find out what you have. If he can't.... I think you > > > should > > > > go into the medical field and diagnose yourself.... :~) > > > > Hope you're feeling better today... > > > > Take care > > > > Vicki > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 26, 2002 Report Share Posted July 26, 2002 Vicki, I agree! I went for nine long months, which probably isn't long in the scale of things, of not being diagnosed. I also made the mistake of telling the doctor I was fed up with not knowing what was wrong and lo and behold, he had a diagnosis. Depression. Next thing I was put on anti-depressants and sent to a counsellor, who dismissed me as perfectly undepressed! Yes, keep pushing Ed. You have our sympathy. Lesley >From: anzavic@... >Reply-To: OurMyositis >To: OurMyositis >Subject: ED - diagnosis >Date: Fri, 26 Jul 2002 16:10:01 -0700 (PDT) > > >Hi Ed.... > >You are so right.... now if only we could get the doctors to understand >that. I'm always amazed at doctors telling a patient " Your just a >little stressed out " .... well, after months and even years of pain, >weakness, unable to do much of anything, the not knowing what it is you >have, and the inability to get anyone to really listen to you and the >symptoms you're having is enough to stress anyone out. I went for >years waiting for something to show up so they could diagnose me. It >was so frustrating and I was getting more and more depressed and >exhausted. The worst part is when I told the doctor I was getting >depressed about the whole thing .... Oh then he knew exactly what was >wrong with me... DEPRESSION. I don't know Ed, I wish I could wave a >magic wand and get you a diagnosis. Keep after this new doctor to let >him know that you're sitting on pins and needles waiting for the >results. > >Take care, >Vicki > _________________________________________________________________ Chat with friends online, try MSN Messenger: http://messenger.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 26, 2002 Report Share Posted July 26, 2002 Does anyone in this group speak Korean? I may need help. Ed > > Hi Ed.... > > You are so right.... now if only we could get the doctors to understand > that. I'm always amazed at doctors telling a patient " Your just a > little stressed out " .... well, after months and even years of pain, > weakness, unable to do much of anything, the not knowing what it is you > have, and the inability to get anyone to really listen to you and the > symptoms you're having is enough to stress anyone out. I went for > years waiting for something to show up so they could diagnose me. It > was so frustrating and I was getting more and more depressed and > exhausted. The worst part is when I told the doctor I was getting > depressed about the whole thing .... Oh then he knew exactly what was > wrong with me... DEPRESSION. I don't know Ed, I wish I could wave a > magic wand and get you a diagnosis. Keep after this new doctor to let > him know that you're sitting on pins and needles waiting for the > results. > > Take care, > Vicki Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 26, 2002 Report Share Posted July 26, 2002 Ed ......Don't they realize that their " guesses " cost us or our insurance company hoards of money? Maybe we should change the policy so that " guesses " will be paid by the docs themselves. .......................... I second the motion!. Sometimes I wonder had far they have progressed beyond the mask and rattle stage. Teddi mailto:teddifromok@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 2002 Report Share Posted July 28, 2002 No kidding...1861? Golly, I wonder how they dealt with it? Do you suppose today there are more " conditions " that are identified that give the docs a run for their money in diagnosing? And gee...of all things...why do the doctors " practice " medicine? I want someone who knows what the heck they're doing! LOL! Lynn --- anzavic@... wrote: > > > Hi Ed.... > > Zanna and I were talking about doctors at our > lunching..... Can you > imagine that they discovered myositis in 1861 .... > now how did they do > that then and yet they can't do it now?????? The > medical community > needs to start weeding out the bad doctors or just > let them put bandaids > on. > Vicki > > > Quote Link to comment Share on other sites More sharing options...
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