[TMIC] from Gary Thomas
Here is an article which is in today's South Bend (Indiana) Tribune Health section. It is about a teen boy in Elkhart, IN, who has TM. Gary, Niles, MI http://www.southbendtribune.com/apps/pbcs.dll/article?AID=/20080708/Lives/533203569/1047/Lives
Re: [TMIC] from Gary Thomas
Great story of hope. Thanks Gary Diane in Canada - Original Message - From: [EMAIL PROTECTED] To: TMIC List Sent: Wednesday, July 09, 2008 9:42 AM Subject: [TMIC] from Gary Thomas Here is an article which is in today's South Bend (Indiana) Tribune Health section. It is about a teen boy in Elkhart, IN, who has TM. Gary, Niles, MI http://www.southbendtribune.com/apps/pbcs.dll/article?AID=/20080708/Lives/533203569/1047/Lives
Re: [TMIC] from Gary
Ann, It is good to know that you are still improving after a number of years. It gives me hope. I hope you will continue to improve. I still have not seen a neurologist and don't plan to. I don't think one could help me at this point. I am still fighting to get more therapy. Pray for me. Naomi C-4 quad, incomplete since July 2, 2005 ** Get a sneak peek of the all-new AOL at http://discover.aol.com/memed/aolcom30tour
Re: [TMIC] from Gary
Naomi I have TM for seventeen years and the only time I saw a Neurologist was at Onset of TM and when 2 years after , I asked for a referal. which did no good.Since 1992 I have not seen a Neurologist and I honestly think that there would not have been a lot that they could have done for me. I have been paralysed from the waist down, but have gradually regained feelings in most of my lower body, except from the above ankle area to toes, but that area iis also getting better. Unfortunately I am still unable to walk. even with doing one and half hr. sessions of excercise and swimming 2 times a week. I permanently use a wheelchair and this is not for the want of trying to walk Like someone else said I am resigned to living with TM by now and I dont think that any cure of Stem Cell treatment or any other, will be on the agends in my lifetime. I sincerely hope that it will be possible some day, especially for the little ones. Hope this will also help others. Regards Ann - Original Message - From: [EMAIL PROTECTED] To: [EMAIL PROTECTED] ; tmic-list@eskimo.com Sent: Tuesday, June 26, 2007 5:15 PM Subject: Re: [TMIC] from Gary Gary, I am pretty much in the same boat as you. I was diagnosed with TM July 2005. At that time, I had spinal taps and plasmapheresis. I stayed in the hospital for four months for rehabilitation. Since I've left the hospital, I have not seen a neurologist. I do not have a regular neurologist to go to. When I go to my primary care physician, I will ask her to refer me to one, although I don't know what good he'll be at this point. July 2 is my two year anniversary. The only doctors I see on a regular basis is, my primary care physician and my Physical Medicine and Rehabilitation doctor. I have a Baclofen pump and my rehab doctor maintains that. Any other complaints, I see my primary care physician. I had a post on this message board not to long ago about the need for a neurologist. I read that a lot of people go to them, but I haven't seen one in the past two years. I don't know if it's necessary or not. Naomi C-4 quad, incomplete, since July 2, 2005
Re: [TMIC] from Gary
Ann, Naomi, Gary, etc. My story is pretty much the same too.Was thunderstruck Sept. 05. Still havent been 100% diagnosed but I am pretty sure its TM. Have gone to numerous neurologists - I dont know why. They dont really do anything. I just figure there may be something new out there but I will probably know about it on my own. Also am mostly in a wheelchair but can drag myself around with a walker. Fortunately I am in no pain but of course alot of discomfort - burning, cold sensations, etc. Thanks to one therapist and her urging and a good reality check I have a power chair and do drive a van using my leg so I am pretty mobile. Of course I do miss my tennis and golf but what can you do. Was told today that I have worsening osteoporosis of my hips and I should do more weight bearing exercise. Thats a joke. If I cant stand how can I bear weight on my legs. (I have been doing extensive therapy for the past almost 2 years which got me where I am today but I guess my bones dont recognize that.) Take care all, Rosalie ** Get a sneak peek of the all-new AOL at http://discover.aol.com/memed/aolcom30tour
RE: [TMIC] from Gary
I wouldn't do the spinal tap at this time either. Maybe, if you were having new symptoms, but your not. Sandy Brassil From: [EMAIL PROTECTED] [mailto:[EMAIL PROTECTED] Sent: Tuesday, June 26, 2007 5:47 PM To: [EMAIL PROTECTED] Cc: tmic-list@eskimo.com Subject: Re: [TMIC] from Gary Sally, I think I agree with your statement Unless you feel like you're having another attack, it seems to me that the original 'attack' of TM is long past and you're just dealing with the aftermath of the attack and treatment meds, like most of us. I think my neuro's idea is that if the spinal tap shows MS then I can take treatment to help prevent further MS attacks. He said that he hopes it was just a one time lesion brought on by a virus but the spinal tap will show if it is MS and treatment right away would stem any tide of MS. My opinion is that iwhat happened to me is just a one- time idiopathic occurrence as I have had no brain or spinal changes in three years ( I've had MRIs) and so forget the spinal tap. Of course, if I get hit down the road with MS I'll wish I had listened to him--so I'm in a quandry. I do have good insurance so could just get the spinal tap but still.. Thanks for your input. Gary - Original MeUnless you feel like you're having another attack, it seems to me that the original 'attack' of TM is long past and you're just dealing with the aftermath of the attack and treatment meds, like most of us.ssage - From: [EMAIL PROTECTED] To: [EMAIL PROTECTED] Cc: tmic-list@eskimo.com Sent: Tuesday, June 26, 2007 5:26 PM Subject: Re: [TMIC] from Gary Gary, I'm no expert here but this sounds concerning to me. It was my impression that the spinal tap they did in the ER was to establish if there was a viral cause of the TM (or was it bacterial? - sorry I always get the 2 confused). They even put me on meds just in case and sent the sample to the mainland to have it tested. When it came back negative, they stopped the meds. I always kind of raise my eyebrows at doc's giving meds 'just in case'. Unless you feel like you're having another attack, it seems to me that the original 'attack' of TM is long past and you're just dealing with the aftermath of the attack and treatment meds, like most of us. It sounds like she wants to treat you as if the inflammation in your spinal cord just started, rather than recognizing that it was just the culprit that originated all the problems you have now, leaving you with a myriad of symptoms to deal with! It sounds like she's read something about TM and remembers this piece, but doesn't understand where all the pieces fit! But I well may be wrong, here, and welcome differing opinions! I was fortunate that the neuro who was in the ER had seen a case of TM before and had the 1,000 mg/day for 5-days routine of methyl-prednisone started within 13 or 14 hours of my sudden paralysis. Within 3 days I could wiggle a muscle in my knee, and went from there. On the other hand, she doesn't seem to know anything about the aftermath of symptoms I deal with, and seems to think if I can stand up and walk, everything's fine. But hey, you can't have everything! At least I'm not still paralyzed! Good luck, Sally
Re: [TMIC] from Gary
Again, just my opinion, but any of us could get 'hit' again! But if there's no signs of a repeat attack, it seems a little over-cautious to worry about it. (How many TMers have ended up with MS? I know there's some, but my impression is, there's a whole bunch of us that only have TM.) Again, I may be wrong. Sally
RE: [TMIC] from Gary
No, I think you're right. My understanding is that TM originates from a virus that moves into the spinal column and becomes TM. MS is it's own disease. And almost always, TM is a one time event. But, occasionally, it hits more than once. Like, for me, they tested me for every kind of virus you can think of. On paper, I'm the healthiest person you know. But, last November, I got diarrhea really bad. Then, after about 10 days, everything just stopped. Literally. They call it a rogue virus. They never found anything. But, it came, did it's damage and left. Tim Holder Worship Leader for Celebrate Recovery [EMAIL PROTECTED] (501)224-7171 ext. 1454 Fellowship Bible Church 1901 Napa Valley Drive Little Rock, AR 72212-3913 From: [EMAIL PROTECTED] [mailto:[EMAIL PROTECTED] Sent: Wednesday, June 27, 2007 4:01 AM To: [EMAIL PROTECTED] Cc: [EMAIL PROTECTED]; tmic-list@eskimo.com Subject: Re: [TMIC] from Gary Again, just my opinion, but any of us could get 'hit' again! But if there's no signs of a repeat attack, it seems a little over-cautious to worry about it. (How many TMers have ended up with MS? I know there's some, but my impression is, there's a whole bunch of us that only have TM.) Again, I may be wrong. Sally
Re: [TMIC] from Gary
Sally, I agree. Especially after three years and no re- occurrence so why start thinking of MS. That is why I have so far not had a spinal tap but my neurologist has planted seeds of doubt in my mind. Thanks Gary - Original Message - From: [EMAIL PROTECTED] To: [EMAIL PROTECTED] Cc: [EMAIL PROTECTED] ; tmic-list@eskimo.com Sent: Wednesday, June 27, 2007 5:01 AM Subject: Re: [TMIC] from Gary Again, just my opinion, but any of us could get 'hit' again! But if there's no signs of a repeat attack, it seems a little over-cautious to worry about it. (How many TMers have ended up with MS? I know there's some, but my impression is, there's a whole bunch of us that only have TM.) Again, I may be wrong. Sally
Re: [TMIC] from Gary
Jude, You must have misunderstood my e-mail. I cannot walk, due to deterioration of my body, for lack of therapy. I am consider a quad, because my TM affects all four limbs. I do not have any use of my right hand or leg. My left leg works okay, but my left arm has limited use and so does my left hand. I am an able to feed myself. I can't hold a book, nor turn the pages. I can't write, scratch where it itches, blow my own nose, wash myself or dress myself. I have to have someone with me 24 hours a day. I go from the bed, to the wheelchair, and back to the bed. I spent all of my day on the computer and watching TV. I wish I could walk. I would start walking, and never stop! Naomi C-4 quad, incomplete since July 2, 2005 ** See what's free at http://www.aol.com.
RE: [TMIC] from Gary
Tim.. I don't think it's odd that three of you that work at the same place all have these issues. There was someone on this list a year or two ago from Ohio that had been working at a hospital that was getting renovated and there were 3 or 4 people who were either diagnosed with TM or MS during that time. She was pursuing trying to make a connection with it all, but I don't know how she made out. I believe molds were considered as a possible cause. Anyway, I don't think it's just coincidental. My opinion, of course. Sue -Original Message- From: Tim Holder (Work) [mailto:[EMAIL PROTECTED] Sent: Tuesday, June 26, 2007 5:55 PM To: tmic-list@eskimo.com Subject: RE: [TMIC] from Gary Here's what I can't figure out. I have symptoms of TM and MS. The doctor thinks it's TM only because they don't see any lesions on my brain or spine. BUT...when they did the spinal tap, the only thing they found was that the myelin protein level was raised. Which should show that there is a lesion somewhere. And that is a definite sign of MS. But, they don't see any on any MRI's. And believe me, I've had plenty. And I go back for more in August. But, because he's not seeing lesions, he isn't taking MS off the table, just in case they see some on the new MRI's. And many of you have TM and DO have lesions. So, how do they tell the difference between TM and MS at this early stage. I have had symptoms since last November. And I have a good friend who got symptoms at the same time as me. She was also diagnosed with TM. But, they just did a new set of MRI's on her and the lesions are worse so she's been rediagnosed with MS. And I have another friend who was diagnosed with MS last August. That's three of us that work at the same place. Odd, huh? Tim Holder Worship Leader for Celebrate Recovery [EMAIL PROTECTED] (501)224-7171 ext. 1454 Fellowship Bible Church 1901 Napa Valley Drive Little Rock, AR 72212-3913 -Original Message- From: Trudy [mailto:[EMAIL PROTECTED] Sent: Tuesday, June 26, 2007 2:43 PM To: tmic-list@eskimo.com Subject: RE: [TMIC] from Gary I was diagnosed with TM five yrs. ago. When I went over to Medicare I had to get all new doctors.. My new neuro decided it was MS. So he did a spinal tap (thankfully, he's very good at it) but I did have to lay there for two hours afterwards so bring some tapes!! The spinal tap was no more conclusive now than it was five yrs ago. I have lesions on the brain which is why the MS has now been diagnosed. I take Copaxone my insurance card against a serious MS attack. But I think it's TM... I do have to see my neuro every 3-4 months for checkup, prescriptions, etc... Good luck! Trudy
Re: [TMIC] from Gary
I dont think coincidences really happen. There is something more to it. My next door neighbor in a condo (we shared a party wall) was diagnosed with TM about 12 years ago. He was around the same age that I am now (a little bit old). Same symtoms that I had and spent the rest of his life in a wheelchair. I think that is rather odd. I had never heard of TM at that time and now here I am with the same thing. It is very strange. Rosalie ** See what's free at http://www.aol.com.
RE: [TMIC] from Gary
The frequent return trips most likely is related to the age of your Neuro. If he/she is young, it's student loans, building a new practice, house payments ect If he/she is older it's most likely college fund for theirs, alimoney payments a new BMW, country club dues ect
Larry in Oklahoma who is still under the weather
Larry Throne, MSW
From: cakalley [EMAIL PROTECTED]Reply-To: cakalley [EMAIL PROTECTED]To: tmic-list@eskimo.comSubject: RE: [TMIC] from GaryDate: Mon, 25 Jun 2007 23:29:02 -0500 (GMT-05:00)Larry, I agree with you regarding the spinal tap - why after three years for a spinal tap? I thought the spinal tap was only done at the beginning which if TM is still active, some kind of protein is found. MRI's will show where the scar tissue is on the spine and if any new leisons have appearred and then the spinal tap to confirm another episode of TM. That's what happened in my case at least and what was explained to me.Of course now, any MRI includes a full head and spine due to possibility of MS. But, I'm not scheduled for another MRI until next year. Really when I go see my Neuro now, it's the basic test of sticking with a pin
and seeing me walk without my walker or cane which I can do for a few steps. He also fills prescrips if needed. All of which takes about 10 minutes but other than paying my co-pay so he can pay his bills, I wonder why I am going every 3 months?Candy K.-Original Message-From: Larry Throne [EMAIL PROTECTED]Sent: Jun 25, 2007 9:39 PMTo: [EMAIL PROTECTED], tmic-list@eskimo.comSubject: RE: [TMIC] from GaryWhat ever you do, stay flat on your back as long as you can. After my first one no body told me to stay down and I reached to the end of the bed to get something and Bam! I thought someone shoved a hot ice pick in my brain. That was over thirty years ago and I still remember that pain! Other than that, I had several others over the next few weeks and even the next few
years. I think I have had 8 or 9 total and none of the others were painful at all. Mostly discomfort.ÂI don't know why he insist on one now, I would think a MRI would make a better diagnostic tool?ÂGood luck though. Larry in Oklahoma where I am feeling better. It's amazing what a couple of rounds of cipro will do forÂyouLarry Throne, MSWFrom: Wendy [EMAIL PROTECTED]To: "'TMIC List'" tmic-list@eskimo.comSubject: RE: [TMIC] from GaryDate: Mon, 25 Jun 2007 22:23:33 +0200.shape{;}p.MsoNormal, li.MsoNormal, div.MsoNormal{margin:0in;margin-bottom:.0001pt;font-size:12.0pt;font-family:'Times New Roman';}a:link, span.MsoHyperlink{color:blue;text-decoration:underline;}a:visited,
span.MsoHyperlinkFollowed{color:purple;text-decoration:underline;}span.EmailStyle18{font-family:Arial;color:navy;[EMAIL PROTECTED] Section1{size:8.5in 11.0in;margin:1.0in 1.25in 1.0in 1.25in;}div.Section1{page:Section1;}Hi Gary:ÂThe spinal tap wasnÂt so bad. Just be sure to drink plenty of water afterwards to minimize a headache. I did have a bad headache for two or three days, but it was worth getting some answers.ÂÂJust my two centsÂ
.ÂWendy in NJÂFrom: [EMAIL PROTECTED] [mailto:[EMAIL PROTECTED]Sent: Tuesday, June 26, 2007 4:15 AMTo: TMIC ListSubject: [TMIC] from GaryÂThanks to all who gave an input about fatigue. I went to
my neurologist today but did not accept a prescription at this time. I think I'll try some of the non-prescription suggestions including trying to rest more. I do work full-time and clean our church for three hours twice a week plus keep up a house.ÂÂThere is another issue about whichÂI would like some thoughts from others:ÂWhile in the hospital three years ago the diagnosis was TM. I was never referred to the neuro who made the diagnosis as far as follow-up. I just went to my primary physcian who just said there is no treatment. After two years I asked if he would refer a neuro and he did.ÂWell, the neuro was flabbergasted that I had no follow-ups soÂordered spinal and brain MRIs and the spinal was the only on the showed the
"old" lesion--no change in two years.ÂI had another brain MRI last week and today was told no lesions.ÂHowever, the neuro still won't accept firmly a TM diagnosis andÂwants me to have a spinal tap because if it is positive I can take monthly IV's to help prevent any further "damage".He said he hopes I have just had an isolated incident brought on by a virus but, of course, won't say that is the case so wants the spinal tap but won't "twist my arm" but let him know and he will order it.ÂSo, has anyone had anything similar happen? What would you do? A spinal tap doesn't sound fun. Could it create further problems?ÂSorry to be so
wordy.ÂThanks,Gary in MichiganLike puzzles? Play free games earn great prizes. Play Clink now.Candy K. Need a break? Find your escape route with Live Search Maps.
Re: [TMIC] from Gary
Gary, I am pretty much in the same boat as you. I was diagnosed with TM July 2005. At that time, I had spinal taps and plasmapheresis. I stayed in the hospital for four months for rehabilitation. Since I've left the hospital, I have not seen a neurologist. I do not have a regular neurologist to go to. When I go to my primary care physician, I will ask her to refer me to one, although I don't know what good he'll be at this point. July 2 is my two year anniversary. The only doctors I see on a regular basis is, my primary care physician and my Physical Medicine and Rehabilitation doctor. I have a Baclofen pump and my rehab doctor maintains that. Any other complaints, I see my primary care physician. I had a post on this message board not to long ago about the need for a neurologist. I read that a lot of people go to them, but I haven't seen one in the past two years. I don't know if it's necessary or not. Naomi C-4 quad, incomplete, since July 2, 2005 ** See what's free at http://www.aol.com.
Re: [TMIC] from Gary
Larry in Oklahoma, you are one crazy guy. Naomi C-4 quad, incomplete since July 2, 2005 ** See what's free at http://www.aol.com.
RE: [TMIC] from Gary
I was diagnosed with TM five yrs. ago. When I went over to Medicare I had to get all new doctors.. My new neuro decided it was MS. So he did a spinal tap (thankfully, he's very good at it) but I did have to lay there for two hours afterwards so bring some tapes!! The spinal tap was no more conclusive now than it was five yrs ago. I have lesions on the brain which is why the MS has now been diagnosed. I take Copaxone my insurance card against a serious MS attack. But I think it's TM... I do have to see my neuro every 3-4 months for checkup, prescriptions, etc... Good luck! Trudy
Re: [TMIC] from Gary
Gary, I'm no expert here but this sounds concerning to me. It was my impression that the spinal tap they did in the ER was to establish if there was a viral cause of the TM (or was it bacterial? - sorry I always get the 2 confused). They even put me on meds just in case and sent the sample to the mainland to have it tested. When it came back negative, they stopped the meds. I always kind of raise my eyebrows at doc's giving meds 'just in case'. Unless you feel like you're having another attack, it seems to me that the original 'attack' of TM is long past and you're just dealing with the aftermath of the attack and treatment meds, like most of us. It sounds like she wants to treat you as if the inflammation in your spinal cord just started, rather than recognizing that it was just the culprit that originated all the problems you have now, leaving you with a myriad of symptoms to deal with! It sounds like she's read something about TM and remembers this piece, but doesn't understand where all the pieces fit! But I well may be wrong, here, and welcome differing opinions! I was fortunate that the neuro who was in the ER had seen a case of TM before and had the 1,000 mg/day for 5-days routine of methyl-prednisone started within 13 or 14 hours of my sudden paralysis. Within 3 days I could wiggle a muscle in my knee, and went from there. On the other hand, she doesn't seem to know anything about the aftermath of symptoms I deal with, and seems to think if I can stand up and walk, everything's fine. But hey, you can't have everything! At least I'm not still paralyzed! Good luck, Sally
Re: [TMIC] from Gary
Sally, I think I agree with your statement Unless you feel like you're having another attack, it seems to me that the original 'attack' of TM is long past and you're just dealing with the aftermath of the attack and treatment meds, like most of us. I think my neuro's idea is that if the spinal tap shows MS then I can take treatment to help prevent further MS attacks. He said that he hopes it was just a one time lesion brought on by a virus but the spinal tap will show if it is MS and treatment right away would stem any tide of MS. My opinion is that iwhat happened to me is just a one- time idiopathic occurrence as I have had no brain or spinal changes in three years ( I've had MRIs) and so forget the spinal tap. Of course, if I get hit down the road with MS I'll wish I had listened to him--so I'm in a quandry. I do have good insurance so could just get the spinal tap but still.. Thanks for your input. Gary - Original MeUnless you feel like you're having another attack, it seems to me that the original 'attack' of TM is long past and you're just dealing with the aftermath of the attack and treatment meds, like most of us.ssage - From: [EMAIL PROTECTED] To: [EMAIL PROTECTED] Cc: tmic-list@eskimo.com Sent: Tuesday, June 26, 2007 5:26 PM Subject: Re: [TMIC] from Gary Gary, I'm no expert here but this sounds concerning to me. It was my impression that the spinal tap they did in the ER was to establish if there was a viral cause of the TM (or was it bacterial? - sorry I always get the 2 confused). They even put me on meds just in case and sent the sample to the mainland to have it tested. When it came back negative, they stopped the meds. I always kind of raise my eyebrows at doc's giving meds 'just in case'. Unless you feel like you're having another attack, it seems to me that the original 'attack' of TM is long past and you're just dealing with the aftermath of the attack and treatment meds, like most of us. It sounds like she wants to treat you as if the inflammation in your spinal cord just started, rather than recognizing that it was just the culprit that originated all the problems you have now, leaving you with a myriad of symptoms to deal with! It sounds like she's read something about TM and remembers this piece, but doesn't understand where all the pieces fit! But I well may be wrong, here, and welcome differing opinions! I was fortunate that the neuro who was in the ER had seen a case of TM before and had the 1,000 mg/day for 5-days routine of methyl-prednisone started within 13 or 14 hours of my sudden paralysis. Within 3 days I could wiggle a muscle in my knee, and went from there. On the other hand, she doesn't seem to know anything about the aftermath of symptoms I deal with, and seems to think if I can stand up and walk, everything's fine. But hey, you can't have everything! At least I'm not still paralyzed! Good luck, Sally
RE: [TMIC] from Gary
Here's what I can't figure out. I have symptoms of TM and MS. The doctor thinks it's TM only because they don't see any lesions on my brain or spine. BUT...when they did the spinal tap, the only thing they found was that the myelin protein level was raised. Which should show that there is a lesion somewhere. And that is a definite sign of MS. But, they don't see any on any MRI's. And believe me, I've had plenty. And I go back for more in August. But, because he's not seeing lesions, he isn't taking MS off the table, just in case they see some on the new MRI's. And many of you have TM and DO have lesions. So, how do they tell the difference between TM and MS at this early stage. I have had symptoms since last November. And I have a good friend who got symptoms at the same time as me. She was also diagnosed with TM. But, they just did a new set of MRI's on her and the lesions are worse so she's been rediagnosed with MS. And I have another friend who was diagnosed with MS last August. That's three of us that work at the same place. Odd, huh? Tim Holder Worship Leader for Celebrate Recovery [EMAIL PROTECTED] (501)224-7171 ext. 1454 Fellowship Bible Church 1901 Napa Valley Drive Little Rock, AR 72212-3913 -Original Message- From: Trudy [mailto:[EMAIL PROTECTED] Sent: Tuesday, June 26, 2007 2:43 PM To: tmic-list@eskimo.com Subject: RE: [TMIC] from Gary I was diagnosed with TM five yrs. ago. When I went over to Medicare I had to get all new doctors.. My new neuro decided it was MS. So he did a spinal tap (thankfully, he's very good at it) but I did have to lay there for two hours afterwards so bring some tapes!! The spinal tap was no more conclusive now than it was five yrs ago. I have lesions on the brain which is why the MS has now been diagnosed. I take Copaxone my insurance card against a serious MS attack. But I think it's TM... I do have to see my neuro every 3-4 months for checkup, prescriptions, etc... Good luck! Trudy
Re: [TMIC] from Gary
Pam, What is the difference between a neuro, and a neurologist? I thought neuro was short for neurologist. The only issues that I have had that need attending to, are a lingering side affects of TM. Either my primary care physician or my physical medicine and rehab doctor takes care of these issues. My physical condition, basically, hasn't changed much since the onset. After my plasmapheresis, I gained a little movement in my left leg and arm. The right side is still totally paralyzed. In the earlier stage of my illness while in rehab, I was up on a platform walker, walking nearly 400 feet. Since being in the nursing facility and in another hospital to have my baclofen pump put in, my condition has deteriorated. I am barely able to stand and pivot to get in my wheelchair. Even after all of this, I still haven't seen the need for a neurologist, unless he's going to give me some much-needed physical therapy. Naomi C-4 quad, incomplete since July 2, 2005 ** See what's free at http://www.aol.com.
Re: [TMIC] from Gary
Sally, You are so, so right. I did not get my plasma exchange until arriving at a second hospital, eight days later. I think that time difference makes the difference between walking and paralyze. Not until I received the exchange, that I get any movement back. I am still classified as a C4 quad, because all four limbs are affected. I honestly believe that if I had gotten that exchange earlier, I would have more movement. So, at this point, I don't need a neurologist, I need a physical therapist. Naomi C-4 quad, incomplete since July 2, 2005 ** See what's free at http://www.aol.com.
RE: [TMIC] from Gary
I was in the bed for almost a week after my spinal tap. No one told me it is VERY helpful to drink caffeine. So, I got a 2 litre Mountain Dew and drank a glass full every couple of hours. I was feeling good enough to sit up within about 4 hours. Drink LOTS of caffeine after the spinal tap and it will help. NO KIDDING!!! Tim Holder Worship Leader for Celebrate Recovery [EMAIL PROTECTED] (501)224-7171 ext. 1454 Fellowship Bible Church 1901 Napa Valley Drive Little Rock, AR 72212-3913 From: Larry Throne [mailto:[EMAIL PROTECTED] Sent: Monday, June 25, 2007 9:40 PM To: [EMAIL PROTECTED]; tmic-list@eskimo.com Subject: RE: [TMIC] from Gary What ever you do, stay flat on your back as long as you can. After my first one no body told me to stay down and I reached to the end of the bed to get something and Bam! I thought someone shoved a hot ice pick in my brain. That was over thirty years ago and I still remember that pain! Other than that, I had several others over the next few weeks and even the next few years. I think I have had 8 or 9 total and none of the others were painful at all. Mostly discomfort. I don't know why he insist on one now, I would think a MRI would make a better diagnostic tool? Good luck though. Larry in Oklahoma where I am feeling better. It's amazing what a couple of rounds of cipro will do for you Larry Throne, MSW From: Wendy [EMAIL PROTECTED] To: 'TMIC List' tmic-list@eskimo.com Subject: RE: [TMIC] from Gary Date: Mon, 25 Jun 2007 22:23:33 +0200 Hi Gary: The spinal tap wasn't so bad. Just be sure to drink plenty of water afterwards to minimize a headache. I did have a bad headache for two or three days, but it was worth getting some answers. Just my two cents Wendy in NJ From: [EMAIL PROTECTED] [mailto:[EMAIL PROTECTED] Sent: Tuesday, June 26, 2007 4:15 AM To: TMIC List Subject: [TMIC] from Gary Thanks to all who gave an input about fatigue. I went to my neurologist today but did not accept a prescription at this time. I think I'll try some of the non-prescription suggestions including trying to rest more. I do work full-time and clean our church for three hours twice a week plus keep up a house. There is another issue about which I would like some thoughts from others: While in the hospital three years ago the diagnosis was TM. I was never referred to the neuro who made the diagnosis as far as follow-up. I just went to my primary physcian who just said there is no treatment. After two years I asked if he would refer a neuro and he did. Well, the neuro was flabbergasted that I had no follow-ups so ordered spinal and brain MRIs and the spinal was the only on the showed the old lesion--no change in two years. I had another brain MRI last week and today was told no lesions. However, the neuro still won't accept firmly a TM diagnosis and wants me to have a spinal tap because if it is positive I can take monthly IV's to help prevent any further damage. He said he hopes I have just had an isolated incident brought on by a virus but, of course, won't say that is the case so wants the spinal tap but won't twist my arm but let him know and he will order it. So, has anyone had anything similar happen? What would you do? A spinal tap doesn't sound fun. Could it create further problems? Sorry to be so wordy. Thanks, Gary in Michigan Like puzzles? Play free games earn great prizes. Play Clink now. http://g.msn.com/8HMBENUS/2731??PS=47575
Re: [TMIC] from Gary
Before recently changing physicians it had been five years, since the onset of my TM since I had seen a Neurologist. My new doc found that unacceptable and immediately set me up with one at our local hospital. Now, I am seeing the neuro for a second appt. in three months. It only takes one good doctor to make a difference. Peace, Jude Our present troubles are quite small and won't last very long. Yet they produce for us an immeasurably great Glory that will last forever 2 Corinthians 4:17 NLT ** See what's free at http://www.aol.com.
Re: [TMIC] from Gary
Jude, Medical information that was given to me, states that plasma exchange should be done within the first 48 hours. The sooner, the better. Although some information states, it can be done as late as 20 days later. So in your case, I wouldn't expect a great improvement, but with this quirky syndrome known as TM, who knows. Naomi C-4 quad, incomplete since July 2, 2005 ** See what's free at http://www.aol.com.
[TMIC] from Gary
Thanks to all who gave an input about fatigue. I went to my neurologist today but did not accept a prescription at this time. I think I'll try some of the non-prescription suggestions including trying to rest more. I do work full-time and clean our church for three hours twice a week plus keep up a house. There is another issue about which I would like some thoughts from others: While in the hospital three years ago the diagnosis was TM. I was never referred to the neuro who made the diagnosis as far as follow-up. I just went to my primary physcian who just said there is no treatment. After two years I asked if he would refer a neuro and he did. Well, the neuro was flabbergasted that I had no follow-ups so ordered spinal and brain MRIs and the spinal was the only on the showed the old lesion--no change in two years. I had another brain MRI last week and today was told no lesions. However, the neuro still won't accept firmly a TM diagnosis and wants me to have a spinal tap because if it is positive I can take monthly IV's to help prevent any further damage. He said he hopes I have just had an isolated incident brought on by a virus but, of course, won't say that is the case so wants the spinal tap but won't twist my arm but let him know and he will order it. So, has anyone had anything similar happen? What would you do? A spinal tap doesn't sound fun. Could it create further problems? Sorry to be so wordy. Thanks, Gary in Michigan
RE: [TMIC] from Gary
What ever you do, stay flat on your back as long as you can. After my first one no body told me to stay down and I reached to the end of the bed to get something and Bam! I thought someone shoved a hot ice pick in my brain. That was over thirty years ago and I still remember that pain! Other than that, I had several others over the next few weeks and even the next few years. I think I have had 8 or 9 total and none of the others were painful at all. Mostly discomfort. I don't know why he insist on one now, I would think a MRI would make a better diagnostic tool? Good luck though. Larry in Oklahoma where I am feeling better. It's amazing what a couple of rounds of cipro will do foryou Larry Throne, MSW From: Wendy [EMAIL PROTECTED]To: "'TMIC List'" tmic-list@eskimo.comSubject: RE: [TMIC] from GaryDate: Mon, 25 Jun 2007 22:23:33 +0200 Hi Gary: The spinal tap wasnt so bad. Just be sure to drink plenty of water afterwards to minimize a headache. I did have a bad headache for two or three days, but it was worth getting some answers. Just my two cents . Wendy in NJ From: [EMAIL PROTECTED] [mailto:[EMAIL PROTECTED] Sent: Tuesday, June 26, 2007 4:15 AMTo: TMIC ListSubject: [TMIC] from Gary Thanks to all who gave an input about fatigue. I went to my neurologist today but did not accept a prescription at this time. I think I'll try some of the non-prescription suggestions including trying to rest more. I do work full-time and clean our church for three hours twice a week plus keep up a house. There is another issue about whichI would like some thoughts from others: While in the hospital three years ago the diagnosis was TM. I was never referred to the neuro who made the diagnosis as far as follow-up. I just went to my primary physcian who just said there is no treatment. After two years I asked if he would refer a neuro and he did. Well, the neuro was flabbergasted that I had no follow-ups soordered spinal and brain MRIs and the spinal was the only on the showed the "old" lesion--no change in two years. I had another brain MRI last week and today was told no lesions. However, the neuro still won't accept firmly a TM diagnosis andwants me to have a spinal tap because if it is positive I can take monthly IV's to help prevent any further "damage". He said he hopes I have just had an isolated incident brought on by a virus but, of course, won't say that is the case so wants the spinal tap but won't "twist my arm" but let him know and he will order it. So, has anyone had anything similar happen? What would you do? A spinal tap doesn't sound fun. Could it create further problems? Sorry to be so wordy. Thanks, Gary in Michigan Like puzzles? Play free games & earn great prizes. Play Clink now.
RE: [TMIC] from Gary
Larry, I agree with you regarding the spinal tap - why after three years for a
spinal tap? I thought the spinal tap was only done at the beginning which if
TM is still active, some kind of protein is found. MRI's will show where the
scar tissue is on the spine and if any new leisons have appearred and then the
spinal tap to confirm another episode of TM. That's what happened in my case
at least and what was explained to me.
Of course now, any MRI includes a full head and spine due to possibility of MS.
But, I'm not scheduled for another MRI until next year. Really when I go see
my Neuro now, it's the basic test of sticking with a pin and seeing me walk
without my walker or cane which I can do for a few steps. He also fills
prescrips if needed. All of which takes about 10 minutes but other than paying
my co-pay so he can pay his bills, I wonder why I am going every 3 months?
Candy K.
-Original Message-
From: Larry Throne [EMAIL PROTECTED]
Sent: Jun 25, 2007 9:39 PM
To: [EMAIL PROTECTED], tmic-list@eskimo.com
Subject: RE: [TMIC] from Gary
What ever you do, stay flat on your back as long as you can. After my first
one no body told me to stay down and I reached to the end of the bed to get
something and Bam! I thought someone shoved a hot ice pick in my brain. That
was over thirty years ago and I still remember that pain! Other than that, I
had several others over the next few weeks and even the next few years. I
think I have had 8 or 9 total and none of the others were painful at all.
Mostly discomfort.
I don't know why he insist on one now, I would think a MRI would make a better
diagnostic tool?
Good luck though. Larry in Oklahoma where I am feeling better. It's amazing
what a couple of rounds of cipro will do for you
Larry Throne, MSW
From: Wendy [EMAIL PROTECTED]
To: 'TMIC List' tmic-list@eskimo.com
Subject: RE: [TMIC] from Gary
Date: Mon, 25 Jun 2007 22:23:33 +0200
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1.25in;}div.Section1{page:Section1;}
Hi Gary:
The spinal tap wasnt so bad. Just be sure to drink plenty of water
afterwards to minimize a headache. I did have a bad headache for two or three
days, but it was worth getting some answers.
Just my two cents
.
Wendy in NJ
From: [EMAIL PROTECTED] [mailto:[EMAIL PROTECTED]
Sent: Tuesday, June 26, 2007 4:15 AM
To: TMIC List
Subject: [TMIC] from Gary
Thanks to all who gave an input about fatigue. I went to my neurologist today
but did not accept a prescription at this time. I think I'll try some of the
non-prescription suggestions including trying to rest more. I do work
full-time and clean our church for three hours twice a week plus keep up a
house.
There is another issue about which I would like some thoughts from others:
While in the hospital three years ago the diagnosis was TM. I was never
referred to the neuro who made the diagnosis as far as follow-up. I just went
to my primary physcian who just said there is no treatment. After two years I
asked if he would refer a neuro and he did.
Well, the neuro was flabbergasted that I had no follow-ups so ordered spinal
and brain MRIs and the spinal was the only on the showed the old lesion--no
change in two years.
I had another brain MRI last week and today was told no lesions.
However, the neuro still won't accept firmly a TM diagnosis and wants me to
have a spinal tap because if it is positive I can take monthly IV's to help
prevent any further damage.
He said he hopes I have just had an isolated incident brought on by a virus
but, of course, won't say that is the case so wants the spinal tap but won't
twist my arm but let him know and he will order it.
So, has anyone had anything similar happen? What would you do? A spinal tap
doesn't sound fun. Could it create further problems?
Sorry to be so wordy.
Thanks,
Gary in Michigan
Like puzzles? Play free games earn great prizes. Play Clink now.
Candy K.
