Guest guest Posted April 7, 2005 Report Share Posted April 7, 2005 Kim Thanks for the update. I wish the news had been that you had answers. What did they think of your pulmonary testing? laurie > > > Well, the second biopsy results still aren't in from Athena. 3 1/2 > months and still waiting. It's frustrating, but I know everyone goes > through the waiting. > Kim > > > > > > > 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 April 7, 2005 Report Share Posted April 7, 2005 He didn't really look at them, and didn't comment. I think he's done, all he's going to for me. The visit was a waste of time. Kim > > > > > > Well, the second biopsy results still aren't in from Athena. 3 1/2 > > months and still waiting. It's frustrating, but I know everyone goes > > through the waiting. > > Kim > > > > > > > > > > > > > > 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 April 8, 2005 Report Share Posted April 8, 2005 I was diagnosed by a neuro/opthomalogist at town University....it was the fact that I was suddenly deafened, diabetic, and a person of short stature that first tipped him off. He also did an eye exam with the light and lens and apparantly on the back of my eye are red streaks. He set up a muscle biopsy for me to be sent to Dr. Shoffner at Emory. The ragged red fibers were a confirmation as was the DNA point mutation that gave the final diagnosis of MELAS. Hope this helps. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2005 Report Share Posted April 8, 2005 Kim Just so you are aware, you can change MDA doctors if there is more than one or go to an MDA clinic that is not in your geographical area. That is what I do. It is a longer drive, but worth it to me. I'm sorry the appointment was such a disappointment. laurie > > > He didn't really look at them, and didn't comment. I think he's > done, all he's going to for me. The visit was a waste of time. > Kim > > > > > > > > > > > Well, the second biopsy results still aren't in from Athena. 3 > 1/2 > > > months and still waiting. It's frustrating, but I know everyone > goes > > > through the waiting. > > > Kim > > > > > > > > > > > > > > > > > > > > > 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 April 8, 2005 Report Share Posted April 8, 2005 Laurie, Thanks, I may do that. I might as well wait for the biopsy results, then decide. My daughter and I will see the eye doctor that specializes in muscle problems in our area the end of the month. I've heard some people say they were diagnosed by an eye doctor. What shows up for an eye doctor to be able to diagnose someone? Also, if I were to ask my internist to do any blood tests, what tests might helpful. Someone also suggested having my MRI from 2 years ago re-read, because at the time they were thinking MS. Kim > > > > > > > > > > > > Well, the second biopsy results still aren't in from Athena. 3 > > 1/2 > > > > months and still waiting. It's frustrating, but I know everyone > > goes > > > > through the waiting. > > > > Kim > > > > > > > > > > > > > > > > > > > > > > > > > > > > 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 April 8, 2005 Report Share Posted April 8, 2005 Kim I think it would be a good idea to have your MRI reread. I think there is a list of the blood and urine tests that could be done in an article on the UMDF website. It may also be on the website. If not, e-mail me privately and I'll see what I have that might help. My scanner is not hooked up, so it will have to be in my computer or handy. laurie > > I was diagnosed by a neuro/opthomalogist at town University....it was > > the fact that I was suddenly deafened, diabetic, and a person of short > stature > that first tipped him off. He also did an eye exam with the light and lens > > and apparantly on the back of my eye are red streaks. He set up a muscle > biopsy > for me to be sent to Dr. Shoffner at Emory. The ragged red fibers were a > confirmation as was the DNA point mutation that gave the final diagnosis of > > MELAS. Hope this helps. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2005 Report Share Posted April 8, 2005 I went to three MDA clinics in my state, before going to one out of state that I'm much happier with. YMMV, but I found that the smaller clinic (at town, PA) is much nicer and better doctors than the ones in Newark, Englewood, and New Brunswick NJ. I remember going to one doctor's office in Englewood - he was an MDA doctor but saw him at his private office. I had a stroke-like episode, and his nurse was such a B*TCH!!! She was like " Calm down honey, you're just upset! " when I couldn't walk and had slurred speech and confusion. I wasn't well enough even to insist she call the doctor over to see me, but I had to call my dad to pick me up - it was a 1-hour drive for him. This was when everybody thought I had myasthenia gravis, which does not have stroke-like episodes. The larger clinics seemed to be lumped in with the free clinics (druggies and bums with DT's - no offense, but if it looks like a duck). I always wondered if they'd take me to the free clinic or the MDA clinic, since I was weak and disoriented and slurring my speech LOL. So don't believe that all MDA docs (or their staff!) are good, but not all are bad either. Take care, RH > > > > > > > > > > > > Well, the second biopsy results still aren't in from Athena. 3 > > 1/2 > > > > months and still waiting. It's frustrating, but I know everyone > > goes > > > > through the waiting. > > > > Kim > > > > > > > > > > > > > > > > > > > > > > > > > > > > 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...
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