Guest guest Posted July 24, 2002 Report Share Posted July 24, 2002 Ed... Sounds like a nightmare! No wonder you're discouraged...anyone would be. Have you thought about writing a letter of complaint to Walter ? sounds as though they need a wake-up call. Annette Re: Emg-diagnosis Walter was a major disappointment Lynn. I spent a week there, got moved from the general ward to the neuro ward, then got moved from one room to another. The place was filthy. I had to wipe someone's urine from the toilet before I used it and I was the only one staying in that room at the time. I was seen by four different groups of neuros. One group was from NIH. I was a total wreck after two neuro exams. They did one the first day, one the third, another the fourth, and then another on the fifth when they also did the EMG and nerve studies. I could barely dress myself or walk. But when the nerve studies were done, which took all of two hours, their only comment was that neuorologically I was completely normal and they would not recommend a biopsy. That was it! Oh yea, then they sent a Psych student over to give me the 20 question drill. No other referalls or anything!! I was fuming! I couldn't wait to get the heck out of that place. Also, the Air Force lost my MRI films on the way there so they didn't even have those to look at. I was a litter patient so they took control of my medical records during the flight to land. So, I guess after having five neuro exams by different hospitals/doctors, I would have to say I'm neurologically sound. So what does that leave? Hmmmmm, too numerous to count. What really makes me sick is I bet if I went to another hospital, they would want to do more nerve studies! Something is dreadfully wrong with our medical system. Can you tell I'm a little sour by now? Sorry, didn't mean to vent, it just had to come out. How have you been lately? Ed > > > Ed, > > > > > > When I was being diagnosed I actually was told I > > have PM after the > > CPK test came back but the > > > physician who did the EMG also confirmed it to me > > and to the > > rheumatologist(s). They also did a > > > muscle biopsy which came back bright purple > > indicating inflammation. > > > > > > I hope you get some help in some direction soon!!! > > > > > > Lelia > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2002 Report Share Posted July 24, 2002 Ed....I'm glad I asked so you could vent!! That's horrible! I haven't heard much about Walter for a long time. It was respected at one time, but I think Bethesda was always held up over WR. I used to take my son to WR for his kidney problem. That's where his surgery was performed and everyone was impressed with that department, etc., etc. If only there was some forum to which you could complain...but sometimes, military being military...darned, Ed, I don't blame you one single bit. How frustrating for you...it just blows my mind and I can't even begin to imagine what it must be like to stand in your shoes! I don't know what else to say....or think to do...hmmm.... I'm fine, thanks for asking...How is doing? Lynn --- bmcm_eod wrote: > Walter was a major disappointment Lynn. I > spent a week there, > got moved from the general ward to the neuro ward, > then got moved > from one room to another. The place was filthy. I > had to wipe > someone's urine from the toilet before I used it and > I was the only > one staying in that room at the time. I was seen by > four different > groups of neuros. One group was from NIH. I was a > total wreck after > two neuro exams. They did one the first day, one > the third, another > the fourth, and then another on the fifth when they > also did the EMG > and nerve studies. I could barely dress myself or > walk. But when > the nerve studies were done, which took all of two > hours, their only > comment was that neuorologically I was completely > normal and they > would not recommend a biopsy. That was it! Oh yea, > then they sent a > Psych student over to give me the 20 question drill. > No other > referalls or anything!! I was fuming! I couldn't > wait to get the > heck out of that place. Also, the Air Force lost my > MRI films on the > way there so they didn't even have those to look at. > I was a litter > patient so they took control of my medical records > during the flight > to land. So, I guess after having five neuro > exams by different > hospitals/doctors, I would have to say I'm > neurologically sound. So > what does that leave? Hmmmmm, too numerous to > count. What really > makes me sick is I bet if I went to another > hospital, they would want > to do more nerve studies! Something is dreadfully > wrong with our > medical system. Can you tell I'm a little sour by > now? > > Sorry, didn't mean to vent, it just had to come out. > > How have you been lately? > > Ed > > > > > > Ed, > > > > > > > > When I was being diagnosed I actually was told > I > > > have PM after the > > > CPK test came back but the > > > > physician who did the EMG also confirmed it to > me > > > and to the > > > rheumatologist(s). They also did a > > > > muscle biopsy which came back bright purple > > > indicating inflammation. > > > > > > > > I hope you get some help in some direction > soon!!! > > > > > > > > Lelia > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2002 Report Share Posted July 24, 2002 I feel for you, Ed. It really is ridiculous all that you've gone through and they haven't been able to come up with a diagnosis. What's your next route?? Dawn bmcm_eod wrote: > Walter was a major disappointment Lynn. I spent a week there, > got moved from the general ward to the neuro ward, then got moved > from one room to another. The place was filthy. I had to wipe > someone's urine from the toilet before I used it and I was the only > one staying in that room at the time. I was seen by four different > groups of neuros. One group was from NIH. I was a total wreck after > two neuro exams. They did one the first day, one the third, another > the fourth, and then another on the fifth when they also did the EMG > and nerve studies. I could barely dress myself or walk. But when > the nerve studies were done, which took all of two hours, their only > comment was that neuorologically I was completely normal and they > would not recommend a biopsy. That was it! Oh yea, then they sent a > Psych student over to give me the 20 question drill. No other > referalls or anything!! I was fuming! I couldn't wait to get the > heck out of that place. Also, the Air Force lost my MRI films on the > way there so they didn't even have those to look at. I was a litter > patient so they took control of my medical records during the flight > to land. So, I guess after having five neuro exams by different > hospitals/doctors, I would have to say I'm neurologically sound. So > what does that leave? Hmmmmm, too numerous to count. What really > makes me sick is I bet if I went to another hospital, they would want > to do more nerve studies! Something is dreadfully wrong with our > medical system. Can you tell I'm a little sour by now? > > Sorry, didn't mean to vent, it just had to come out. > > How have you been lately? > > Ed > > > > > > Ed, > > > > > > > > When I was being diagnosed I actually was told I > > > have PM after the > > > CPK test came back but the > > > > physician who did the EMG also confirmed it to me > > > and to the > > > rheumatologist(s). They also did a > > > > muscle biopsy which came back bright purple > > > indicating inflammation. > > > > > > > > I hope you get some help in some direction soon!!! > > > > > > > > Lelia > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2002 Report Share Posted July 24, 2002 I'm saving that for when I finally get a dx!! > > > > Ed, > > > > > > > > When I was being diagnosed I actually was told I > > > have PM after the > > > CPK test came back but the > > > > physician who did the EMG also confirmed it to me > > > and to the > > > rheumatologist(s). They also did a > > > > muscle biopsy which came back bright purple > > > indicating inflammation. > > > > > > > > I hope you get some help in some direction soon!!! > > > > > > > > Lelia > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2002 Report Share Posted July 24, 2002 Just waiting for this last biopsy to be tested for metabolic and mitochondrial disease. It will probably be a month or so before I hear anything back. Ed > > > > > Ed, > > > > > > > > > > When I was being diagnosed I actually was told I > > > > have PM after the > > > > CPK test came back but the > > > > > physician who did the EMG also confirmed it to me > > > > and to the > > > > rheumatologist(s). They also did a > > > > > muscle biopsy which came back bright purple > > > > indicating inflammation. > > > > > > > > > > I hope you get some help in some direction soon!!! > > > > > > > > > > Lelia > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2002 Report Share Posted July 24, 2002 Will do! In fact my case manager was a Navy LT. Ed > > > > > > > Ed, > > > > > > > > > > > > > > When I was being diagnosed I actually was > > told > > > > I > > > > > > have PM after the > > > > > > CPK test came back but the > > > > > > > physician who did the EMG also confirmed > > it to > > > > me > > > > > > and to the > > > > > > rheumatologist(s). They also did a > > > > > > > muscle biopsy which came back bright > > purple > > > > > > indicating inflammation. > > > > > > > > > > > > > > I hope you get some help in some direction > > > > soon!!! > > > > > > > > > > > > > > Lelia > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2002 Report Share Posted July 24, 2002 They had nothing else to suggest except STRESS. Like that statement alone didn't stress me out LOL!! When I told my Diving Doctor that once I got back he just laughed and shook his head. I'm in bomb disposal for pete's sake!! Ed > > > > > > Ed, > > > > > > > > > > > > When I was being diagnosed I actually was told I > > > > > have PM after the > > > > > CPK test came back but the > > > > > > physician who did the EMG also confirmed it to me > > > > > and to the > > > > > rheumatologist(s). They also did a > > > > > > muscle biopsy which came back bright purple > > > > > indicating inflammation. > > > > > > > > > > > > I hope you get some help in some direction soon!!! > > > > > > > > > > > > Lelia > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2002 Report Share Posted July 25, 2002 As much as I hate to say this and it's going to sound awful, I hope these tests come back positive for one of these diseases. Sounds kinda like the Mitochondrial disease, doesn't it?? Anyway, the reason I say that, is because you know you're not crazy and imagining the pain and the weakness you have so it's GOT to be something. Right?? Please try to stay positive.....we're here for you. Take care, Dawn PS.....Where's been hiding?? She hasn't posted for ages. We miss her. bmcm_eod wrote: > Just waiting for this last biopsy to be tested for metabolic and > mitochondrial disease. It will probably be a month or so before I > hear anything back. > > Ed > > > > > > > Ed, > > > > > > > > > > > > When I was being diagnosed I actually was told I > > > > > have PM after the > > > > > CPK test came back but the > > > > > > physician who did the EMG also confirmed it to me > > > > > and to the > > > > > rheumatologist(s). They also did a > > > > > > muscle biopsy which came back bright purple > > > > > indicating inflammation. > > > > > > > > > > > > I hope you get some help in some direction soon!!! > > > > > > > > > > > > Lelia > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 26, 2002 Report Share Posted July 26, 2002 Thanks Dawn. I'll tell to get hot on her posting. Ed > > > > > > > Ed, > > > > > > > > > > > > > > When I was being diagnosed I actually was told I > > > > > > have PM after the > > > > > > CPK test came back but the > > > > > > > physician who did the EMG also confirmed it to me > > > > > > and to the > > > > > > rheumatologist(s). They also did a > > > > > > > muscle biopsy which came back bright purple > > > > > > indicating inflammation. > > > > > > > > > > > > > > I hope you get some help in some direction soon!!! > > > > > > > > > > > > > > Lelia > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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