Guest guest Posted May 18, 2006 Report Share Posted May 18, 2006 Danny Sorry about your fall. I hope they figure out what is going on with you. let us know what is going on. from Ohio. recyclerisbest recyclerisbest@...> wrote: Fell saturday morning at 1:45 am coming from the bathroom going to the bed in the dark and my leg buckeld backwards and broke the small bone below my knee.Did not know it was broke till morning when I could not even walk or use my other leg either.A trip to the emergency room yeilded me a good fortune.They called in a very good nuro to check me out and after 5 days in the hospital he says I do not have Pls and after a Mri and studing the other 13 Mri's I have had,looking at all my medical records and checking it all out.He says I have traverse mylitis and to get of off the Avonex that I have been trying too for so long and start on a new medicine.Maybe I will stick with this guy and get better.Three years into this i get a new dx so maybe I won't be so weak from the avonex shoots anymore. Danny Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2006 Report Share Posted May 19, 2006 so sorry you broke your leg danny....glad there was a knowledeable neuro on the scene and glad you get off the avonex! not that familiar with traverse myelitis? what is the healing time on that leg? wish you well! tawny recyclerisbest recyclerisbest@...> wrote: Fell saturday morning at 1:45 am coming from the bathroom going to the bed in the dark and my leg buckeld backwards and broke the small bone below my knee.Did not know it was broke till morning when I could not even walk or use my other leg either.A trip to the emergency room yeilded me a good fortune.They called in a very good nuro to check me out and after 5 days in the hospital he says I do not have Pls and after a Mri and studing the other 13 Mri's I have had,looking at all my medical records and checking it all out.He says I have traverse mylitis and to get of off the Avonex that I have been trying too for so long and start on a new medicine.Maybe I will stick with this guy and get better.Three years into this i get a new dx so maybe I won't be so weak from the avonex shoots anymore. Danny Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2006 Report Share Posted May 19, 2006 --- About six to eight weeks on the leg and I think the corect spelling on the Dx is Transverse Myelitis. In PLS-FRIENDS , THSC wrote: > > so sorry you broke your leg danny....glad there was a knowledeable neuro on the scene and glad you get off the avonex! not that familiar with traverse myelitis? what is the healing time on that leg? wish you well! > tawny > > recyclerisbest wrote: > Fell saturday morning at 1:45 am coming from the bathroom going to the > bed in the dark and my leg buckeld backwards and broke the small bone > below my knee.Did not know it was broke till morning when I could not > even walk or use my other leg either.A trip to the emergency room > yeilded me a good fortune.They called in a very good nuro to check me > out and after 5 days in the hospital he says I do not have Pls and > after a Mri and studing the other 13 Mri's I have had,looking at all my > medical records and checking it all out.He says I have traverse mylitis > and to get of off the Avonex that I have been trying too for so long > and start on a new medicine.Maybe I will stick with this guy and get > better.Three years into this i get a new dx so maybe I won't be so weak > from the avonex shoots anymore. Danny > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2006 Report Share Posted May 19, 2006 Danny, Isn't it ironic that for several of us sometime bad has to happen before the docs really open their eyes to look at us? Hope this nes DX causes as much positive change for you as anti-viral therapy has for me. Eva Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2006 Report Share Posted May 19, 2006 >Danny, what is traverse mylitis? Carolyn > Fell saturday morning at 1:45 am coming from the bathroom going to the > bed in the dark and my leg buckeld backwards and broke the small bone > below my knee.Did not know it was broke till morning when I could not > even walk or use my other leg either.A trip to the emergency room > yeilded me a good fortune.They called in a very good nuro to check me > out and after 5 days in the hospital he says I do not have Pls and > after a Mri and studing the other 13 Mri's I have had,looking at all my > medical records and checking it all out.He says I have traverse mylitis > and to get of off the Avonex that I have been trying too for so long > and start on a new medicine.Maybe I will stick with this guy and get > better.Three years into this i get a new dx so maybe I won't be so weak > from the avonex shoots anymore. Danny > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2006 Report Share Posted May 19, 2006 Interesting...transverse myelitis I looked this up out of curiosity and see that the EBV virus can be a factor as this is a herpes disease. Eva, where are you??????? Help..... Arlene Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 2006 Report Share Posted May 20, 2006 Danny, I'm so sorry to hear you broke your leg. I do hope you have someone to help you or check in on you. I had broke my ankle several years ago, in the Spring, and thats not a good time to have a broken bone!!! Darn it! I was pleased to hear about this new neuro you saw - Danny, thats good news. Keep us posted and take care. Donna ~ PLS ~ Iowa broke leg new DX > Fell saturday morning at 1:45 am coming from the bathroom going to the > bed in the dark and my leg buckeld backwards and broke the small bone > below my knee.Did not know it was broke till morning when I could not > even walk or use my other leg either.A trip to the emergency room > yeilded me a good fortune.They called in a very good nuro to check me > out and after 5 days in the hospital he says I do not have Pls and > after a Mri and studing the other 13 Mri's I have had,looking at all my > medical records and checking it all out.He says I have traverse mylitis > and to get of off the Avonex that I have been trying too for so long > and start on a new medicine.Maybe I will stick with this guy and get > better.Three years into this i get a new dx so maybe I won't be so weak > from the avonex shoots anymore. Danny > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 2006 Report Share Posted May 20, 2006 Eva is here but Eva's posts are not always getting through. FBI/NSA can you hear me NOW? I sent a post to Rita and Galen 16 hours ago. The Human Herpes Group is the 'top of the Wave' in latest breaking news of neuro issues and has also a concrete link to respiratory problems. The most mind boggling research so far is they have isolated positive Epstein barr from ruptured brain plaque (autospies) of multi-infarct dementia patients. EBV dormant growth locations were mapped. It vacations in neural (prefers cerebellum) and pharyngeal tissue, skin, cartilage, bone, bladder, adrenal gland, small intestine, thyroid, liver, and pancreas. It appears I got it at birth so it is responsible for my adrenal hyperplasia, my repeated re-activation including left- side hemiplegia of '88 and my new DX 'symptomatic PLS'. It also is linked to the losses of my Mother and Aunt and the current mind loss of my 75 yo sister to multi-infarct dementia. And to think Shands told me March 1, 2006 'we don't treat EBV because everyblody has it' enough said Eva > > Interesting...transverse myelitis > I looked this up out of curiosity and see that the EBV virus can be a > factor as this is a herpes disease. > Eva, where are you??????? > Help..... > Arlene > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 2006 Report Share Posted May 20, 2006 --- Carolyn: Transverse Myelitis from what I understand so far is that a small lesion has attached itself to my cervical spine and maybe a few more on down the spinal cord.These showed up three years ago on my MRI'S but they said they were of no sugnificets and nothing to worry about.They said it looked more like PLS in my case.So they have been treating me for that with Avonex injections weekly,baclofen 30 mg a day and 1800mg a day nurotin for 3 years now. All that junk I think has been killing me especially avonex injections.IT says for recovery it usually works on thirds.About a third of all patients make a full recovery and one third make a partial recovery and a third make no recovery at all.I never heard of this until my balance became so bad last saturday morning my leg buckled backwards and broke the little bone and I could not use either leg and a trip to the ER yeilded me this very smart neuro.That according to the people where he came from at Vanderbilt says he is brillant. What he was doing working ER that day I don't know but I am glad the good lord let me find him in Tn. before I broke my neck.He has put me on a drug called Cellcept and I have my numb fingers crossed. Danny In PLS-FRIENDS , " Carolyn " wrote: > > > >Danny, what is traverse mylitis? Carolyn > > Fell saturday morning at 1:45 am coming from the bathroom going > to the > > bed in the dark and my leg buckeld backwards and broke the small > bone > > below my knee.Did not know it was broke till morning when I could > not > > even walk or use my other leg either.A trip to the emergency room > > yeilded me a good fortune.They called in a very good nuro to check > me > > out and after 5 days in the hospital he says I do not have Pls and > > after a Mri and studing the other 13 Mri's I have had,looking at > all my > > medical records and checking it all out.He says I have traverse > mylitis > > and to get of off the Avonex that I have been trying too for so > long > > and start on a new medicine.Maybe I will stick with this guy and > get > > better.Three years into this i get a new dx so maybe I won't be so > weak > > from the avonex shoots anymore. Danny > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 2006 Report Share Posted May 20, 2006 Thank you NSA/FBI for letting eva's posts finally get thru! briteeyestwo briteeyestwo@...> wrote: Eva is here but Eva's posts are not always getting through. FBI/NSA can you hear me NOW? I sent a post to Rita and Galen 16 hours ago. The Human Herpes Group is the 'top of the Wave' in latest breaking news of neuro issues and has also a concrete link to respiratory problems. The most mind boggling research so far is they have isolated positive Epstein barr from ruptured brain plaque (autospies) of multi-infarct dementia patients. EBV dormant growth locations were mapped. It vacations in neural (prefers cerebellum) and pharyngeal tissue, skin, cartilage, bone, bladder, adrenal gland, small intestine, thyroid, liver, and pancreas. It appears I got it at birth so it is responsible for my adrenal hyperplasia, my repeated re-activation including left- side hemiplegia of '88 and my new DX 'symptomatic PLS'. It also is linked to the losses of my Mother and Aunt and the current mind loss of my 75 yo sister to multi-infarct dementia. And to think Shands told me March 1, 2006 'we don't treat EBV because everyblody has it' enough said Eva > > Interesting...transverse myelitis > I looked this up out of curiosity and see that the EBV virus can be a > factor as this is a herpes disease. > Eva, where are you??????? > Help..... > Arlene > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 2006 Report Share Posted May 20, 2006 Eva, Thanks, friend. I have been receiving your e-mails to the group. Just found it so interesting about Danny after you have introduced us to the Herpes theory. I have not had EBV (I don't think) but I have had shingles years ago. Just one small sore under my lip and pain from face to ear to top of head. Called the dr. for antibiotics and told him had a tooth infection I thought. When I told him I also had a small sore under lip he said to come in, you have the Shingles. Shocked me, I had only heard of Shingles a time or two. Before anything was wrong I noticed I would have a few red dots on one side of face. Next day they would be gone. Day or so later have maybe 2 red dots on other side of face. Sometimes on both sides. Not many just a few on cheeks for one day or so. Never have figured this out and asked neuro when symptons with stiffness started and he said he didn't know. This quit for a few years and have now started back. Now one side is more like a rash. Went to skin dr. and he said Roseca that you get as you get older (boy, don't we love it when the dr. says that). I took Doxycylin for an infected tooth last month and it cleared up completely but now is back again. Didn't intend to bore you with all that. Really appreciate your posts and intellect! Had 3 front teeth pulled Tuesday and some bone scrapping done and a partial (feel like I'am wearing Grandma's teeth). Been taking 1000 mg of Pencilin a day but hasn't cleared the rash. Thrilled you are doing so well. Arlene Quote Link to comment Share on other sites More sharing options...
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