Re: [TMIC] Topamax
Myelin does grow back, its the nerves under the myelin than don't grow back.
Lynne
--- On Mon, 11/16/09, Janice Nichols jan...@centurytel.net wrote:
From: Janice Nichols jan...@centurytel.net
Subject: Re: [TMIC] Topamax
To: tmic-list@eskimo.com, Laurie Zissimos lziss...@aol.com
Date: Monday, November 16, 2009, 11:20 PM
Laurie,
I was told, repeatedly, that myelin did not grow back. Are these the same
doctors that told you you had transverse myelitis?
Janice
From: Laurie Zissimos
Sent: Thursday, November 12, 2009 8:35 PM
To: tmic-list@eskimo.com
Subject: Re: [TMIC] Topamax
Had my annual evaluation with Dr Kerr yesterday after a 2+ hour MRI. The MRI
preliminary report says there is no evidence for abnormal cord signal to
suggest transverse myelitis. I was blown away to learn that the myelin had
all regrown after 4 years. Of course, I still can't walk without a walker
and that is only for ten minutes. Then I revert to the wheel chair. I assume
now all I need if for the nerves to reconnect, lol. I would be happy to
receive comments on this report as I am still baffled about the myelin. I
thought the loss of myelin was the cause of the paralysis.
Dr Kerr also recommended that I start taking Topamax because I complained about
the weight gain associated with the Lyrica. The side effects are kind of
scarey. I wondered who was taking it and what their experience had been.
Looking forward to all responses.
Laurie in Baltimore
-Original Message-
From: Amanda Diskey adis...@yahoo.com
To: tmic-list@eskimo.com
Sent: Thu, Nov 12, 2009 3:14 pm
Subject: [TMIC] Fw: chiropractor
#yiv1412648896 #AOLMsgPart_2_ce3c8c05-a947-4e1a-908b-804695ab417c DIV
{margin:0px;}
- Forwarded Message
From: Amanda Diskey adis...@yahoo.com
To: tmic-list@eskimo.com
Sent: Thu, November 12, 2009 3:14:13 PM
Subject: chiropractor
Does anyone here use a chiropractor or know if it is safe? My shoulders and
neck hurt so bad, and I was wondering if it might help me. the lady i talked
to also does massage which i will definitely do, but i was wondering about the
getting adjusted part. it seems a little scary to me though. any advice or
thoughts?
thanks
amanda
Re: [TMIC] Topamax
Greetings, Myeline grows back but in an unorganized manner so the nerves do not function properly. Myelitis refers to INFLAMMATION- as in ITIS. The MRI showed no abnormal signal meaning no inflammation. Think of a nicely folded pile of laundry in the hall, a 5 years old comes a long and pulls the pile over, makes tents out of the sheets then leaves. Photo of hall shows no boy (Inflammation) but does show everything messed up. Hope that helps F
Re: [TMIC] Topamax
Also like a pot of wet spaghetti, Frank?? :) ---Original Message--- From: pjv1...@chartermi.net Date: 11/17/2009 6:31:04 PM To: Laurie Zissimos; fr...@franksheldon.com; Janice Nichols; tmic-list@eskimo.com Subject: Re: [TMIC] Topamax Great mental visual Frank. My hubby asked me what I was laughing at so I read him your entire post after explaining the discussion. We both have a clear picture of what is going on. Patti - Michigan fr...@franksheldon.com wrote: Greetings, Myeline grows back but in an unorganized manner so the nerves do not function properly. Myelitis refers to INFLAMMATION- as in ITIS. The MRI showed no abnormal signal meaning no inflammation. Think of a nicely folded pile of laundry in the hall, a 5 years old comes a long and pulls the pile over, makes tents out of the sheets then leaves. Photo of hall shows no boy (Inflammation) but does show everything messed up Hope that helps F 01.jpg01_header.gif
Re: [TMIC] Topamax
Dear Frank, Have we told you lately how much we appreciate you? What a great explanation. Your special ways help us to see through all the cobwebs. Thank you! Big hugs, Linda (ID) - Original Message - From: fr...@franksheldon.commailto:fr...@franksheldon.com To: Janice Nicholsmailto:jan...@centurytel.net ; tmic-list@eskimo.commailto:tmic-list@eskimo.com ; Laurie Zissimosmailto:lziss...@aol.com Sent: Tuesday, November 17, 2009 6:39 AM Subject: Re: [TMIC] Topamax Greetings, Myeline grows back but in an unorganized manner so the nerves do not function properly. Myelitis refers to INFLAMMATION- as in ITIS. The MRI showed no abnormal signal meaning no inflammation. Think of a nicely folded pile of laundry in the hall, a 5 years old comes a long and pulls the pile over, makes tents out of the sheets then leaves. Photo of hall shows no boy (Inflammation) but does show everything messed up. Hope that helps F
Re: [TMIC] Topamax
Laurie, I was told, repeatedly, that myelin did not grow back.Are these the same doctors that told you you had transverse myelitis? Janice From: Laurie Zissimos Sent: Thursday, November 12, 2009 8:35 PM To: tmic-list@eskimo.com Subject: Re: [TMIC] Topamax Had my annual evaluation with Dr Kerr yesterday after a 2+ hour MRI. The MRI preliminary report says there is no evidence for abnormal cord signal to suggest transverse myelitis. I was blown away to learn that the myelin had all regrown after 4 years. Of course, I still can't walk without a walker and that is only for ten minutes. Then I revert to the wheel chair. I assume now all I need if for the nerves to reconnect, lol. I would be happy to receive comments on this report as I am still baffled about the myelin. I thought the loss of myelin was the cause of the paralysis. Dr Kerr also recommended that I start taking Topamax because I complained about the weight gain associated with the Lyrica. The side effects are kind of scarey. I wondered who was taking it and what their experience had been. Looking forward to all responses. Laurie in Baltimore -Original Message- From: Amanda Diskey adis...@yahoo.com To: tmic-list@eskimo.com Sent: Thu, Nov 12, 2009 3:14 pm Subject: [TMIC] Fw: chiropractor - Forwarded Message From: Amanda Diskey adis...@yahoo.com To: tmic-list@eskimo.com Sent: Thu, November 12, 2009 3:14:13 PM Subject: chiropractor Does anyone here use a chiropractor or know if it is safe? My shoulders and neck hurt so bad, and I was wondering if it might help me. the lady i talked to also does massage which i will definitely do, but i was wondering about the getting adjusted part. it seems a little scary to me though. any advice or thoughts? thanks amanda
Re: [TMIC] Topamax.....MRI's....and Chiropractors
I've found that all Chiropractors are different. I've never been so lucky to get warm blankets. I've gotten cold ice packs only. Also roller massage machines. Oh, I went to one for about 2 years who was awesome. He had several massage people in the office to treat after the adjustments and before you went home. I drove a long way to see him, and it wasn't convenient at all, but a great office. He also gave me a great reduced price since I was disabled and getting SSDI. Nice man. Hugs, Barbara A in Auburn CA -Original Message- From: roseofr...@aol.com To: laura.beau...@gmail.com; balmat...@aol.com; tmic-list@eskimo.com Sent: Sat, Nov 14, 2009 9:13 am Subject: Re: [TMIC] Topamax.MRI'sand Chiropractors Twelve years ago I was in an MRI machine for approx. 1-3/4 hours the first night and almost 4 hours the second night. It was a nightmare and they turned me claustrophobic. Thenabout one year agoI had to go again for my lumbarthey gave me a little sedation, wrapped me in a warm blanket, gave me ear plugs and I fell asleepI was only in there for approx. 30 minutes. The new machines are wonderful...! I guess you need to ask how old their machines are to know how long you will be in there. Topamax was also a nightmare for me so be really careful with that stuff. My entire body vibrated so badly it drove me nuts. The appetite suppression you get from taking it just wasn't worth it for me.I'd rather be pleasingly plump than vibrating out of my skin constantly. The vibrating stopped completely about two days after I stopped taking that med. Chiropractors are a blessing for me. I only go when the pain gets so bad I can't control it with pain meds at allthat tells me something is out and I need that adjustment. They usually use a heavy heating pad to relax your muscles before the adjustmentfound out I can't take that.it's too heavy for my lumbar...so we now just skip that part.I don't get into their gowns either I just get on that table, have him adjust me and I'm outta there. :-) Hugs, Lynn In a message dated 11/13/2009 8:56:30 P.M. Pacific Standard Time, laura.beau...@gmail.com writes: What I don't get is that if it was a question of up-to-date technology, there would be more people reporting the same time lines...makes me wonder if the quality is of any good... It's something I really want to look into, if anything, for curiosity's sake. Laura On 13/11/2009 7:20 PM, Barbara Alma wrote: Wow Laura, maybe your provider has much more up to date technology than mine, but that's such an incredible difference. I had my last done last year or earlier this year, not sure. She ordered upper and lower thoracic and that took at least an hour and a half I think. The then decided to order a cervical one and that was at least another half hr. She didn't like what she saw, then really didn't like what she saw, but I wasn't about to go into surgery for any corrections as long as I'm able to function at this level. Hugs, Barbara A in Auburn CA -Original Message- From: Laura Beaudin laura.beau...@gmail.com To: Barbara Alma balmat...@aol.com Sent: Fri, Nov 13, 2009 9:33 am Subject: Re: [TMIC] Topamax Top of the head to sacrum, I was in 30 minutes tops. Perhaps technology is changing? Dunno... On 13/11/2009 3:58 AM, Barbara Alma wrote: It depends on where they are scanning. When I had upper and lower spine done they scheduled 2 hours, otherwise only 45 minutes. It actually took a bit longer, as they kept having to restart since I'd go into spasms, lol. Hugs, Barbara A in Auburn CA -Original Message- From: Laura Beaudin laura.beau...@gmail.com To: tmic-list@eskimo.com Cc: tmic-list@eskimo.com Sent: Thu, Nov 12, 2009 10:53 pm Subject: Re: [TMIC] Topamax I don't understand how most hospitals do their MRIs in 2 hours (give or take), but the most time I've ever spent in one is 30 minutes..and that's when I did it with and without contrast...? Laura On 12/11/2009 7:35 PM, Laurie Zissimos wrote: Had my annual evaluation with Dr Kerr yesterday after a 2+ hour MRI. The MRI preliminary report says there is no evidence for abnormal cord signal to suggest transverse myelitis. I was blown away to learn that the myelin had all regrown after 4 years. Of course, I still can't walk without a walker and that is only for ten minutes. Then I revert to the wheel chair. I assume now all I need if for the nerves to reconnect, lol. I would be happy to receive comments on this report as I am still baffled about the myelin. I thought the loss of myelin was the cause of the paralysis. Dr Kerr also recommended that I start taking Topamax because I complained about the weight gain associated with the Lyrica. The side effects are kind of scarey. I wondered who was taking it and what their experience had been. Looking forward to all responses. Laurie in Baltimore
Re: [TMIC] Topamax.....MRI's....and Chiropractors
Hey Everybody, I've seen a few posts here where folks have been posting about Topamax. I guess I missed the initial post as to what the symptom was that they were taking Topamax for But, I'm just throwing my .02 in here...I also take Topamax. I was prescribed it when I was having such a rough time with Migraines that started after my TM hit. I actually went through a few different meds before my doc put me on Topamax and now I'm so thankful that he found something that worked. I take 100mg of Topamax a day (2/ 25mg tabs in the a.m and 2/25mg in the p.m.) I have no side effects whatsoever. No appetite suppression, no vibrating...nothing...except that my migraines are now under control. So, just as I've said before...it seems that meds affect each and every one of us differentlyit's so hard to say what's going to work well for one and not for another. Take neurontin for example... most people seem to get pain relief from it at some varying dosage level. It didn't do a damn thing for me...So, I continue on with grinning and bearing it...and take some MS Contin on really bad days... Kevin Weilacher N.E. Ohio (Canton) From: roseofr...@aol.com roseofr...@aol.com To: laura.beau...@gmail.com; balmat...@aol.com; tmic-list@eskimo.com Sent: Sat, November 14, 2009 12:13:27 PM Subject: Re: [TMIC] Topamax.MRI'sand Chiropractors Twelve years ago I was in an MRI machine for approx. 1-3/4 hours the first night and almost 4 hours the second night. It was a nightmare and they turned me claustrophobic. Thenabout one year agoI had to go again for my lumbarthey gave me a little sedation, wrapped me in a warm blanket, gave me ear plugs and I fell asleepI was only in there for approx. 30 minutes. The new machines are wonderful...! I guess you need to ask how old their machines are to know how long you will be in there. Topamax was also a nightmare for me so be really careful with that stuff. My entire body vibrated so badly it drove me nuts. The appetite suppression you get from taking it just wasn't worth it for me.I'd rather be pleasingly plump than vibrating out of my skin constantly. The vibrating stopped completely about two days after I stopped taking that med. Chiropractors are a blessing for me. I only go when the pain gets so bad I can't control it with pain meds at allthat tells me something is out and I need that adjustment. They usually use a heavy heating pad to relax your muscles before the adjustmentfound out I can't take that.it's too heavy for my lumbar...so we now just skip that part.I don't get into their gowns either I just get on that table, have him adjust me and I'm outta there. :-) Hugs, Lynn In a message dated 11/13/2009 8:56:30 P.M. Pacific Standard Time, laura.beau...@gmail.com writes: What I don't get is that if it was a question of up-to-date technology, there would be more people reporting the same time lines...makes me wonder if the quality is of any good... It's something I really want to look into, if anything, for curiosity's sake. Laura On 13/11/2009 7:20 PM, Barbara Alma wrote: Wow Laura, maybe your provider has much more up to date technology than mine, but that's such an incredible difference. I had my last done last year or earlier this year, not sure. She ordered upper and lower thoracic and that took at least an hour and a half I think. The then decided to order a cervical one and that was at least another half hr. She didn't like what she saw, then really didn't like what she saw, but I wasn't about to go into surgery for any corrections as long as I'm able to function at this level. Hugs, Barbara A in Auburn CA -Original Message- From: Laura Beaudin laura.beau...@gmail.com To: Barbara Alma balmat...@aol.com Sent: Fri, Nov 13, 2009 9:33 am Subject: Re: [TMIC] Topamax Top of the head to sacrum, I was in 30 minutes tops. Perhaps technology is changing? Dunno... On 13/11/2009 3:58 AM, Barbara Alma wrote: It depends on where they are scanning. When I had upper and lower spine done they scheduled 2 hours, otherwise only 45 minutes. It actually took a bit longer, as they kept having to restart since I'd go into spasms, lol. Hugs, Barbara A in Auburn CA -Original Message- From: Laura Beaudin laura.beau...@gmail.com To: tmic-list@eskimo.com Cc: tmic-list@eskimo.com Sent: Thu, Nov 12, 2009 10:53 pm Subject: Re: [TMIC] Topamax I don't understand how most hospitals do their MRIs in 2 hours (give or take), but the most time I've ever spent in one is 30 minutes..and that's when I did it with and without contrast...? Laura On 12/11/2009 7:35 PM, Laurie Zissimos wrote: Had my annual evaluation with Dr Kerr yesterday after a 2
Re: [TMIC] Topamax/MRI length.
*My MRI's are very long also (Usually about 3-3 1/2 hours.) The length of time is determined by a lot of factors---how much of the cord is done, what the doctor is looking for, and radiologic parameters. I always have the brain, C cord, T cord, and L area done, with and without contrast.* *Re: Topomax. It's a good drug, but one has to remember to drink lots of water in order to stay hydrated. Our daughter was on Topomax for a very short while and ended up becoming toxic. She was very ill. So, if you are on a large dose, be careful with hydration.* *Grace*
Re: [TMIC] Topamax
Had my annual evaluation with Dr Kerr yesterday after a 2+ hour MRI. The MRI preliminary report says there is no evidence for abnormal cord signal to suggest transverse myelitis. I was blown away to learn that the myelin had all regrown after 4 years. Of course, I still can't walk without a walker and that is only for ten minutes. Then I revert to the wheel chair. I assume now all I need if for the nerves to reconnect, lol. I would be happy to receive comments on this report as I am still baffled about the myelin. I thought the loss of myelin was the cause of the paralysis. Dr Kerr also recommended that I start taking Topamax because I complained about the weight gain associated with the Lyrica. The side effects are kind of scarey. I wondered who was taking it and what their experience had been. Looking forward to all responses. Laurie in Baltimore -Original Message- From: Amanda Diskey adis...@yahoo.com To: tmic-list@eskimo.com Sent: Thu, Nov 12, 2009 3:14 pm Subject: [TMIC] Fw: chiropractor - Forwarded Message From: Amanda Diskey adis...@yahoo.com To: tmic-list@eskimo.com Sent: Thu, November 12, 2009 3:14:13 PM Subject: chiropractor Does anyone here use a chiropractor or know if it is safe? My shoulders and neck hurt so bad, and I was wondering if it might help me. the lady i talked to also does massage which i will definitely do, but i was wondering about the getting adjusted part. it seems a little scary to me though. any advice or thoughts? thanks amanda =
Re: [TMIC] Topamax
I don't understand how most hospitals do their MRIs in 2 hours (give or take), but the most time I've ever spent in one is 30 minutes..and that's when I did it with and without contrast...? Laura On 12/11/2009 7:35 PM, Laurie Zissimos wrote: Had my annual evaluation with Dr Kerr yesterday after a 2+ hour MRI. The MRI preliminary report says there is no evidence for abnormal cord signal to suggest transverse myelitis. I was blown away to learn that the myelin had all regrown after 4 years. Of course, I still can't walk without a walker and that is only for ten minutes. Then I revert to the wheel chair. I assume now all I need if for the nerves to reconnect, lol. I would be happy to receive comments on this report as I am still baffled about the myelin. I thought the loss of myelin was the cause of the paralysis. Dr Kerr also recommended that I start taking Topamax because I complained about the weight gain associated with the Lyrica. The side effects are kind of scarey. I wondered who was taking it and what their experience had been. Looking forward to all responses. Laurie in Baltimore -Original Message- From: Amanda Diskey adis...@yahoo.com To: tmic-list@eskimo.com Sent: Thu, Nov 12, 2009 3:14 pm Subject: [TMIC] Fw: chiropractor - Forwarded Message *From:* Amanda Diskey adis...@yahoo.com mailto:adis...@yahoo.com *To:* tmic-list@eskimo.com mailto:tmic-list@eskimo.com *Sent:* Thu, November 12, 2009 3:14:13 PM *Subject:* chiropractor Does anyone here use a chiropractor or know if it is safe? My shoulders and neck hurt so bad, and I was wondering if it might help me. the lady i talked to also does massage which i will definitely do, but i was wondering about the getting adjusted part. it seems a little scary to me though. any advice or thoughts? thanks amanda
