Re: [TMIC] RE: tmic-digest Digest V2006 #80
"Most people have gone to too many drs. with no real results as far as I am concerned. Be interested in hearing your take on this. Take care, Rosalie" I think you may have hit it on the head; same for ms. My first neuro sent me to a rheumatologist, then a rheumatologist sent me to a neuro, then neuro to rheumo, now neuro to better neuro. I just want to know how bad and exactly what is going on with my body. I then plan on going online and treating myself with alternative medicine. In my case, I think that may be all that is left. Please do not follow my example though. I have been slowly getting worse since 1965. And, pt took me from limping to hardly being able to walk, so that did not work either. --- I am good at computer games though. :) Natalie - Original Message - From: [EMAIL PROTECTED] To: [EMAIL PROTECTED] ; tmic-list@eskimo.com Sent: Monday, June 26, 2006 4:34 PM Subject: Re: [TMIC] RE: tmic-digest Digest V2006 #80 Hi Bernie, I live in Woodbury and am seeing a neuro from North Shore Manhasset Hosp. I was taken ill this past Sept. As of yet not really diagnosed. First thought it was GM, then TM or a spinal cord stroke. This Neuro (Jeffrey Nelson) took on my case after all the neuros in the hosp. threw up there hands. His greatest advice to me was get off your butt and do therapy. There is no cure for any of this, so get out there and work your butt off at therapy. 8 mos. later I am able to get around with a walker but not well. Just now considering a power chair and getting a special minivan. After reading all the back and forth e mails from everyone on this list, I have come to the realization that the drs. really do not know what to do with this.
RE: [TMIC] RE: tmic-digest Digest V2006 #80
Dear Bernie, I have not seen him for about 5 years, but the neurologist who initially diagnosed me 9 years ago is Dr. James Miller from Columbia Presbytarain Hospital. His # is 212-305-5508. I think he is a good Doctor and is very aware of TM but I hated his bedside manner. I now go once a year to John Hopkins and I see Dr. Kerr. If you need anymore info. Or just want to talk let me know and I will supply my phone #. Rob in New Jersey -Original Message- From: Butcher, Bernie [SFS] [mailto:[EMAIL PROTECTED] Sent: Monday, June 26, 2006 3:22 PM To: tmic-list@eskimo.com Subject: [TMIC] RE: tmic-digest Digest V2006 #80 Anyone know of a good TM neurologist in New York? I live on Long Island, not far from NYC and am seeing a neurologist who is more of a MS Neurologist I have learned (from a case worker). My condition is not improving, it's worsening. Bernie Butcher Honeywell Engineering 180 Michael Drive Syosset, New York 11791 516-921-6704 ext:1143 [EMAIL PROTECTED] From: [EMAIL PROTECTED] [mailto:[EMAIL PROTECTED] Sent: Sunday, June 25, 2006 5:48 AM To: [EMAIL PROTECTED] Subject: tmic-digest Digest V2006 #80
Re: [TMIC] RE: tmic-digest Digest V2006 #80
Hi Bernie, I live in Woodbury and am seeing a neuro from North Shore Manhasset Hosp. I was taken ill this past Sept. As of yet not really diagnosed. First thought it was GM, then TM or a spinal cord stroke. This Neuro (Jeffrey Nelson) took on my case after all the neuros in the hosp. threw up there hands. His greatest advice to me was get off your butt and do therapy. There is no cure for any of this, so get out there and work your butt off at therapy. 8 mos. later I am able to get around with a walker but not well. Just now considering a power chair and getting a special minivan. After reading all the back and forth e mails from everyone on this list, I have come to the realization that the drs. really do not know what to do with this. Most people have gone to too many drs. with no real results as far as I am concerned. Be interested in hearing your take on this. Take care, Rosalie
Re: [TMIC] RE: tmic-digest Digest V2006 #80
Hi Rosalie, I don't live anywhere near New York. However, I agree that sometimes we go to more doctors than we need to. I am one of the walking wounded - use cane, walker, wheelchair for shopping mall or long distance. So, in this case I am not that 'badly' affected. Still have some bladder problems but do not require a catheter. I feel very fortunate. The one thing I do know from reading here and talking to my doctor is that after the initial treatment with the heavy drugs it seems to me that a person is treated with something to help control the pain and then just keep trying to move every day. I find that in the warmer weather like now, I cannot go out in the hot sun for very long at all. But- I do like the warmer weather as my joints are not as stiff - unless I do too much. If I can keep busy around my home with flowers (in pots on decks), sewing that I'm doing today, or just keeping my house tidy then I don't dwell on my nerve pain as much. I know this is not the answer for everyone or maybe no one else but me. I do think that once I accepted that this is my life and just get on with it now. My life as I knew it before is forever gone. Heather in Calgary - Original Message - From: [EMAIL PROTECTED] To: [EMAIL PROTECTED] ; tmic-list@eskimo.com Sent: Monday, June 26, 2006 2:34 PM Subject: Re: [TMIC] RE: tmic-digest Digest V2006 #80 Hi Bernie, I live in Woodbury and am seeing a neuro from North Shore Manhasset Hosp. I was taken ill this past Sept. As of yet not really diagnosed. First thought it was GM, then TM or a spinal cord stroke. This Neuro (Jeffrey Nelson) took on my case after all the neuros in the hosp. threw up there hands. His greatest advice to me was get off your butt and do therapy. There is no cure for any of this, so get out there and work your butt off at therapy. 8 mos. later I am able to get around with a walker but not well. Just now considering a power chair and getting a special minivan. After reading all the back and forth e mails from everyone on this list, I have come to the realization that the drs. really do not know what to do with this. Most people have gone to too many drs. with no real results as far as I am concerned. Be interested in hearing your take on this. Take care, Rosalie No virus found in this incoming message.Checked by AVG Free Edition.Version: 7.1.394 / Virus Database: 268.9.5/376 - Release Date: 6/26/2006
Re: [TMIC] RE: tmic-digest Digest V2006 #80
Hi Heather, Thanks for the input. Fortunately, I do not have alot of nerve pain now but do have crazy feelings of heat and cold. I too am just coming to an acceptance. Can't believe it because for the past 30 years I was an A tennis player and then a fairly decent golfer (thats where I was hit with this, on the golf course). In fact, today I looked into hand controled driving and getting a minivan so I can get around by myself. Sometimes I, who was never a sleeper, like staying in bed a little later and lounging around a bit. After so long being an athlete it feels almost good not to have to get up real early to get on the tennis court or on the golf course. I guess we can rationalize anything, right? Take care, Rosalie
