[TMIC] Neurontin
I went last week to a new Neuro recommended to me by Dr. Kerr. Besides having me take new MRI's including the brain (never had this one before) he is taking me off Cymbalta and starting me up on Neurontin ( 100 mg per day). He saw no reason to be taking Cymbalta as I am already taking Lyrica and according to the new Dr. both Cymbalta and Lyrica do the same thing and taking both of them is not effective it is just overkill. I wonder if any of the other members who are taking both Lyrica and Cymbalta were ever told this...and what should I expect from the neurontin? I am hoping it will help the banding. What negative side effects have any of you suffered with the neurontin? Thx Rob in New Jersey
Re: [TMIC] Neurontin
NeurontinRobert That seems a bit odd. Lyrica and Neurontin are about the same. Usually when you are taken off Neurontin you are put on Lyrica (which has only been on the market for about the last 3 years). Patti in Michigan takes Lyrica and Cymbalta. They work well for her. I know she was previously on Neurontin and Cymbalta. I would think that taking Lyrica and Neurontin are the overkill ones. A lot of people who were taking Neurontin changed to Lyrica when it came out and most have found more relief from the Lyrica. I was one who tried to switch however the side effects for me with the the Lyrica were badly swollen legs, ankles and I had to go back to the Neurontin. Apparently according to my neuro that the swelling of the legs and ankles using Lyrica occurs in only about 7%. I found that the 10 days I was on the Lyrica helped with the pain more than the Neurontin but the swelling in my lower limbs was not good. I have been on Neurontin since day one back in Sept 2003. Heather in Calgary - Original Message - From: Robert Pall To: tmic-l...@eskimo.net Sent: Monday, May 17, 2010 6:42 AM Subject: [TMIC] Neurontin I went last week to a new Neuro recommended to me by Dr. Kerr. Besides having me take new MRI's including the brain (never had this one before) he is taking me off Cymbalta and starting me up on Neurontin ( 100 mg per day). He saw no reason to be taking Cymbalta as I am already taking Lyrica and according to the new Dr. both Cymbalta and Lyrica do the same thing and taking both of them is not effective it is just overkill. I wonder if any of the other members who are taking both Lyrica and Cymbalta were ever told this.and what should I expect from the neurontin? I am hoping it will help the banding. What negative side effects have any of you suffered with the neurontin? Thx Rob in New Jersey
RE: [TMIC] Neurontin
Heather...I am just so confused.I am starting to believe that the best combinatuion I have used up to now has been Lyrica and 4- Aminopyridine (now AMPYRA). Dr Kerr was going to put me back on these 2 but he first wanted to see how Cymbalta instead of Aminopyridine agreed with me...to cut to the chase I found the Cymbalta was helping but the side effects were offsetting. I figure I will try the neurontin which i believe I took 8-10 years ago...who can remember?.If I see no help with the banding I intend to try the combination of Lyrica and Ampyrafor me Lyrica has been the most effective drug I take ttat for me has no side effects! To be continued! By the way we had our 4th New Jersey TM Support group meeting yesterday with 9 TM'rs attending some with parents or spouses.We spent 3 hours discussing what TM has done to our lives, the meds we take and the Doctors we see...and what we think of them.as always a special and emotional meeting. It is so rare to put this many people together who understand eachother and are able to relate. As always I recommended them going to our website and subscribing. All the best! Rob in New Jersey From: Pieter and Heather [mailto:pieterheat...@shaw.ca] Sent: Monday, May 17, 2010 10:11 AM To: Robert Pall; tmic-l...@eskimo.net Subject: Re: [TMIC] Neurontin Robert That seems a bit odd. Lyrica and Neurontin are about the same. Usually when you are taken off Neurontin you are put on Lyrica (which has only been on the market for about the last 3 years). Patti in Michigan takes Lyrica and Cymbalta. They work well for her. I know she was previously on Neurontin and Cymbalta. I would think that taking Lyrica and Neurontin are the overkill ones. A lot of people who were taking Neurontin changed to Lyrica when it came out and most have found more relief from the Lyrica. I was one who tried to switch however the side effects for me with the the Lyrica were badly swollen legs, ankles and I had to go back to the Neurontin. Apparently according to my neuro that the swelling of the legs and ankles using Lyrica occurs in only about 7%. I found that the 10 days I was on the Lyrica helped with the pain more than the Neurontin but the swelling in my lower limbs was not good. I have been on Neurontin since day one back in Sept 2003. Heather in Calgary - Original Message - From: Robert Pall mailto:rp...@neillsupply.com To: tmic-l...@eskimo.net Sent: Monday, May 17, 2010 6:42 AM Subject: [TMIC] Neurontin I went last week to a new Neuro recommended to me by Dr. Kerr. Besides having me take new MRI's including the brain (never had this one before) he is taking me off Cymbalta and starting me up on Neurontin ( 100 mg per day). He saw no reason to be taking Cymbalta as I am already taking Lyrica and according to the new Dr. both Cymbalta and Lyrica do the same thing and taking both of them is not effective it is just overkill. I wonder if any of the other members who are taking both Lyrica and Cymbalta were ever told this...and what should I expect from the neurontin? I am hoping it will help the banding. What negative side effects have any of you suffered with the neurontin? Thx Rob in New Jersey
Re: [TMIC] Neurontin
Robert...I was suprised as well. I am one of those that switched from Neurontin to Lyrica. It is my understanding that Lyrica is a drug that was developed just for nerve pain. Neurontin is a drug de veloped for seizures that also happens to work well for nerve pain. I still have pain so I will be interested in hearing how this works for you...Cody in Austin Sent from my BlackBerry® wireless device -Original Message- From: Pieter and Heather pieterheat...@shaw.ca Date: Mon, 17 May 2010 08:11:04 To: Robert Pallrp...@neillsupply.com; tmic-l...@eskimo.net Subject: Re: [TMIC] Neurontin NeurontinRobert That seems a bit odd. Lyrica and Neurontin are about the same. Usually when you are taken off Neurontin you are put on Lyrica (which has only been on the market for about the last 3 years). Patti in Michigan takes Lyrica and Cymbalta. They work well for her. I know she was previously on Neurontin and Cymbalta. I would think that taking Lyrica and Neurontin are the overkill ones. A lot of people who were taking Neurontin changed to Lyrica when it came out and most have found more relief from the Lyrica. I was one who tried to switch however the side effects for me with the the Lyrica were badly swollen legs, ankles and I had to go back to the Neurontin. Apparently according to my neuro that the swelling of the legs and ankles using Lyrica occurs in only about 7%. I found that the 10 days I was on the Lyrica helped with the pain more than the Neurontin but the swelling in my lower limbs was not good. I have been on Neurontin since day one back in Sept 2003. Heather in Calgary - Original Message - From: Robert Pall To: tmic-l...@eskimo.net Sent: Monday, May 17, 2010 6:42 AM Subject: [TMIC] Neurontin I went last week to a new Neuro recommended to me by Dr. Kerr. Besides having me take new MRI's including the brain (never had this one before) he is taking me off Cymbalta and starting me up on Neurontin ( 100 mg per day). He saw no reason to be taking Cymbalta as I am already taking Lyrica and according to the new Dr. both Cymbalta and Lyrica do the same thing and taking both of them is not effective it is just overkill. I wonder if any of the other members who are taking both Lyrica and Cymbalta were ever told this.and what should I expect from the neurontin? I am hoping it will help the banding. What negative side effects have any of you suffered with the neurontin? Thx Rob in New Jersey
Re: [TMIC] Neurontin
I tried the cymbalta with the Lyrica but I couldn't tolerate the cymbalta. Have not tried the Ampra...Cody in Austin Sent from my BlackBerry® wireless device -Original Message- From: Robert Pall rp...@neillsupply.com Date: Mon, 17 May 2010 10:24:37 To: Pieter and Heatherpieterheat...@shaw.ca; tmic-l...@eskimo.net Subject: RE: [TMIC] Neurontin Heather...I am just so confused.I am starting to believe that the best combinatuion I have used up to now has been Lyrica and 4- Aminopyridine (now AMPYRA). Dr Kerr was going to put me back on these 2 but he first wanted to see how Cymbalta instead of Aminopyridine agreed with me...to cut to the chase I found the Cymbalta was helping but the side effects were offsetting. I figure I will try the neurontin which i believe I took 8-10 years ago...who can remember?.If I see no help with the banding I intend to try the combination of Lyrica and Ampyrafor me Lyrica has been the most effective drug I take ttat for me has no side effects! To be continued! By the way we had our 4th New Jersey TM Support group meeting yesterday with 9 TM'rs attending some with parents or spouses.We spent 3 hours discussing what TM has done to our lives, the meds we take and the Doctors we see...and what we think of them.as always a special and emotional meeting. It is so rare to put this many people together who understand eachother and are able to relate. As always I recommended them going to our website and subscribing. All the best! Rob in New Jersey From: Pieter and Heather [mailto:pieterheat...@shaw.ca] Sent: Monday, May 17, 2010 10:11 AM To: Robert Pall; tmic-l...@eskimo.net Subject: Re: [TMIC] Neurontin Robert That seems a bit odd. Lyrica and Neurontin are about the same. Usually when you are taken off Neurontin you are put on Lyrica (which has only been on the market for about the last 3 years). Patti in Michigan takes Lyrica and Cymbalta. They work well for her. I know she was previously on Neurontin and Cymbalta. I would think that taking Lyrica and Neurontin are the overkill ones. A lot of people who were taking Neurontin changed to Lyrica when it came out and most have found more relief from the Lyrica. I was one who tried to switch however the side effects for me with the the Lyrica were badly swollen legs, ankles and I had to go back to the Neurontin. Apparently according to my neuro that the swelling of the legs and ankles using Lyrica occurs in only about 7%. I found that the 10 days I was on the Lyrica helped with the pain more than the Neurontin but the swelling in my lower limbs was not good. I have been on Neurontin since day one back in Sept 2003. Heather in Calgary - Original Message - From: Robert Pall mailto:rp...@neillsupply.com To: tmic-l...@eskimo.net Sent: Monday, May 17, 2010 6:42 AM Subject: [TMIC] Neurontin I went last week to a new Neuro recommended to me by Dr. Kerr. Besides having me take new MRI's including the brain (never had this one before) he is taking me off Cymbalta and starting me up on Neurontin ( 100 mg per day). He saw no reason to be taking Cymbalta as I am already taking Lyrica and according to the new Dr. both Cymbalta and Lyrica do the same thing and taking both of them is not effective it is just overkill. I wonder if any of the other members who are taking both Lyrica and Cymbalta were ever told this...and what should I expect from the neurontin? I am hoping it will help the banding. What negative side effects have any of you suffered with the neurontin? Thx Rob in New Jersey
Re: [TMIC] Neurontin
NeurontinRobert, I can see why you would be confused too. Is he having you take Lyrica AND the Neurontin together? Hmmm I am not familiar with the AMPYRA. I know that some people have had problems with the side effects of the Cymbalta too. Keep us all posted on how things go with you. Is there a reason he is trying these changes? Have you had more problems with pain etc.? Wow, 9 TM'rs together. That IS quite amazing. I have only met a few in a one on one. Not too many around here to get together at one time. Not a lot that I am aware of anyway. We seem to be quite spread out here in Canada. At least people who have subscribed to the TM site anyway. Have a good day. It is going to be nice and warm here again (FINALLY) today. Supposed to be in the mid-20's Celcius. That is somewhere in the 70's Farenheit. It has been lovely the last few days too. This old TM body moves so much easier in this warmer weather. The muscles surely don't tighten up as much and they loosen up easier. Heather in Calgary - Original Message - From: Robert Pall To: Pieter and Heather ; tmic-l...@eskimo.net Sent: Monday, May 17, 2010 8:24 AM Subject: RE: [TMIC] Neurontin Heather...I am just so confused.I am starting to believe that the best combinatuion I have used up to now has been Lyrica and 4- Aminopyridine (now AMPYRA). Dr Kerr was going to put me back on these 2 but he first wanted to see how Cymbalta instead of Aminopyridine agreed with me...to cut to the chase I found the Cymbalta was helping but the side effects were offsetting. I figure I will try the neurontin which i believe I took 8-10 years ago...who can remember?.If I see no help with the banding I intend to try the combination of Lyrica and Ampyrafor me Lyrica has been the most effective drug I take ttat for me has no side effects! To be continued! By the way we had our 4th New Jersey TM Support group meeting yesterday with 9 TM'rs attending some with parents or spouses.We spent 3 hours discussing what TM has done to our lives, the meds we take and the Doctors we see...and what we think of them.as always a special and emotional meeting. It is so rare to put this many people together who understand eachother and are able to relate. As always I recommended them going to our website and subscribing. All the best! Rob in New Jersey -- From: Pieter and Heather [mailto:pieterheat...@shaw.ca] Sent: Monday, May 17, 2010 10:11 AM To: Robert Pall; tmic-l...@eskimo.net Subject: Re: [TMIC] Neurontin Robert That seems a bit odd. Lyrica and Neurontin are about the same. Usually when you are taken off Neurontin you are put on Lyrica (which has only been on the market for about the last 3 years). Patti in Michigan takes Lyrica and Cymbalta. They work well for her. I know she was previously on Neurontin and Cymbalta. I would think that taking Lyrica and Neurontin are the overkill ones. A lot of people who were taking Neurontin changed to Lyrica when it came out and most have found more relief from the Lyrica. I was one who tried to switch however the side effects for me with the the Lyrica were badly swollen legs, ankles and I had to go back to the Neurontin. Apparently according to my neuro that the swelling of the legs and ankles using Lyrica occurs in only about 7%. I found that the 10 days I was on the Lyrica helped with the pain more than the Neurontin but the swelling in my lower limbs was not good. I have been on Neurontin since day one back in Sept 2003. Heather in Calgary - Original Message - From: Robert Pall To: tmic-l...@eskimo.net Sent: Monday, May 17, 2010 6:42 AM Subject: [TMIC] Neurontin I went last week to a new Neuro recommended to me by Dr. Kerr. Besides having me take new MRI's including the brain (never had this one before) he is taking me off Cymbalta and starting me up on Neurontin ( 100 mg per day). He saw no reason to be taking Cymbalta as I am already taking Lyrica and according to the new Dr. both Cymbalta and Lyrica do the same thing and taking both of them is not effective it is just overkill. I wonder if any of the other members who are taking both Lyrica and Cymbalta were ever told this.and what should I expect from the neurontin? I am hoping it will help the banding. What negative side effects have any of you suffered with the neurontin? Thx Rob in New Jersey
Re: [TMIC] health stuff
Jill, I have taken neurontin for over 3 years and have never had tongue numbness.Janice -- From: Kevin Wolfthal wolft...@optonline.net Sent: Sunday, May 16, 2010 10:07 PM To: Jill Posner posnerj...@yahoo.com; tmic-list@eskimo.com Subject: Re: [TMIC] health stuff jill, I never took neurontin, my doctor wouldn't give it to me, no explanation. Kevin Jill Posner wrote: Yes I have had tongue numbness often and thought it was related to when I take neurontin...occurs afterwards. *From:* Kevin Wolfthal wolft...@optonline.net *To:* Laura Beaudin laura.beau...@gmail.com; tmic-list@eskimo.com *Sent:* Sun, May 16, 2010 12:29:51 AM *Subject:* Re: [TMIC] health stuff Laura, No, my dx is still TM. My brother said he gets this kind of numbness when he gets a migraine, and I did have a headache accompanying the numbness. The diarrhea makes me think it was some kind of weird virus. Kevin Laura Beaudin wrote: Kevin, Do you have an MS diagnosis? This is a rather common symptom among MS patients...numb patches here and there. I've gotten them on my tongue and scalp before, among other places. Laura You can easily judge the character of a man by how he treats those who can do nothing for him. -James D. Miles- http://www.bananga.com ...empowering ourselves! Buying a used wheelchair? BUYER BEWARE!!! On Practical-Homeschooling: 10 Free or Inexpensive Homeschool Options http://www.practical-homeschooling.org On 15/05/2010 9:07 PM, Kevin Wolfthal wrote: Hi All, Well, this has been a weird week for me re: health. Tuesday night I started getting severe diarrhea. Shortly after that my tongue started tingling and going numb, then my lips. This continued wednesday, but I had a nurse coming to visit me to check on bedsores on wednesday. She looked at my mouth but didn't feel the numbness was an emergency. By thursday the numbness was getting worse so I took an ambulance to the ER. They checked everything, blood, heart, liver, kidneys, ct-scan of brain, found nothing wrong. Said it could be related to my reflux and possible reaction to meds and OTC stomach meds I take. Also suggested it could be exacerbation of TM symptoms. Finally, maybe emotional causes. In any case, the weird numbness is gone and I'm thankful. Has anyone else had their tongue/mouth go numb? Hope everyone is doing well as possible. Kevin
Re: [TMIC] Neurontin
NeurontinI have been on neurontin for over 3 years and have no side effects. Switched to Lyrica when it came out, and I too became swollen and miserable. Went right off of that! I do not have a severe banding, so not sure if meds take care of it or I was just lucky.I wonder with the brain MRI if they suspected MS. It is my understanding that MS shows scars on brain and TM shows it on the spine.Do pain meds help the banding and where is yours?Mine, such as it is, is on my right side, waist area. Keep us posted on how you are doing. Janice From: Robert Pall Sent: Monday, May 17, 2010 7:42 AM To: tmic-l...@eskimo.net Subject: [TMIC] Neurontin I went last week to a new Neuro recommended to me by Dr. Kerr. Besides having me take new MRI's including the brain (never had this one before) he is taking me off Cymbalta and starting me up on Neurontin ( 100 mg per day). He saw no reason to be taking Cymbalta as I am already taking Lyrica and according to the new Dr. both Cymbalta and Lyrica do the same thing and taking both of them is not effective it is just overkill. I wonder if any of the other members who are taking both Lyrica and Cymbalta were ever told this.and what should I expect from the neurontin? I am hoping it will help the banding. What negative side effects have any of you suffered with the neurontin? Thx Rob in New Jersey
[TMIC] Ampyra
I am going to talk to my doc about taking Ampyra. Are any of you on it? If so, what do you think of it? I have a friend with MS who is starting to take it. Janice
Re: [TMIC] Moving
Good luck and don't end up too worn out. Janice From: Patricia Cooley Sent: Sunday, May 16, 2010 10:09 AM To: tmic-list@eskimo.com Subject: [TMIC] Moving Hi Everyone: This has been in the works for many months, but next Saturday, May 22nd, we are moving to Waupaca in Central Wisconsin. This move we feel is necessary to be near family. My current e-mail address won't work after Thursday this week. I have signed up for google e-mail at: wpcoo...@gmail.com. I will unsubscribe this e-mail address and include my new one. I don't want to lose contact with my TM family. It also might be several days before I have my computer set up and a new internet provider. Moving is certainly the pits, but when you don't have good mobility it really, really sucks. I will be glad when we are settled and will be near to my 2 granddaughters. Patti - Wisconsin
Re: [TMIC] Neurontin
Hi Rob, I was on neurontin when I got out of rehab in 1995. It helped relieve the banding and nerve pain. However,it was still a name brand,not generic,so it was too expensive for me to continue. When it became a generic,I tried it again,but it just made my legs weak. I fell several times because my legs just collapsed without warning. Plus,it didn't help the pain or banding anymore. I wanted to try lyrica,but my doc says it won't help any more than the neurontin did. I hope the neurontin works for you. Cheryl in Easthampton,MA. --- On Mon, 5/17/10, Robert Pall rp...@neillsupply.com wrote: From: Robert Pall rp...@neillsupply.com Subject: [TMIC] Neurontin To: tmic-l...@eskimo.net Date: Monday, May 17, 2010, 8:42 AM I went last week to a new Neuro recommended to me by Dr. Kerr. Besides having me take new MRI's including the brain (never had this one before) he is taking me off Cymbalta and starting me up on Neurontin ( 100 mg per day). He saw no reason to be taking Cymbalta as I am already taking Lyrica and according to the new Dr. both Cymbalta and Lyrica do the same thing and taking both of them is not effective it is just overkill. I wonder if any of the other members who are taking both Lyrica and Cymbalta were ever told this…and what should I expect from the neurontin? I am hoping it will help the banding. What negative side effects have any of you suffered with the neurontin? Thx Rob in New Jersey
[TMIC] neurontin
Rob, I am taking 300mg of Neurontin four times a day. I am allright more or less in the mornings but exhausted by about 4 PM. I have a full time job but work from home. It never takes the pain away completely but when I tried to lower the dose to 200 mg 4 times a day, I couldn't bear the pain and resorted to hydrocodeine to get me through the evenings more or less. I added amitriptilene (just 5 mg at night) for neck pain but the combination left me irritable and on edge in general, in the AM which is when I was functioning better so I stopped it. Now have a newly prescribed (today) lidocaine patch for the back painnot expecting too much. I would love to know what works for people but in the descriptions today and before I have come to understand that every person's tolerance for drugs and symptoms based on where the lesion is and how extensive it is and whether it is active or not...are what produce effects or not. It is complex and one must navigate the meds trying things one by one and evaluating the results. Good luck. Jill
RE: [TMIC] Neurontin
Hi Rob. I couldn't take neurontin. I am on Lyrica, have been for four years now. 75 mg a.m. and 150 mg p.m. It has virtually stopped the banding, and the burning in the feet. I am actually going to lower the dosage to 75 twice a day. However, that has been delayed because of my inability to pace myself so I have paid for it with high pain levels in my legs - but not nerve pain. I am also taking effexor, welbutrin, and long acting oxycodone. I supplement that, as needed, with regular oxy during the day - so if the pain is high - then oxy during the day, or baclofen, - it is a tricky road so I monitor my symptoms constantly. I am seeing a pain specialist in Vancouver BC three times a year - he just writes a script for many months, and I fill as I see fit. That is how it works here in Fort St John. Now, with my son exhibiting what the neurologist is labeling TM, I have no idea what the doctor is going to do here in town. We will find out today - right now he is not managing his pain - he is simply coping with it - I am tough, I can take it (he is 15). He takes 2 percocet in the evening so he can walk the dog - he uses a cane. Good luck with the neurontin - my money is on the lyrica and the effexor - in combination they work wonderful. I do not know what is in Cymbalta, and honestly - I will google it asap. Janet From: Robert Pall [mailto:rp...@neillsupply.com] Sent: May 17, 2010 5:43 AM To: tmic-l...@eskimo.net Subject: [TMIC] Neurontin I went last week to a new Neuro recommended to me by Dr. Kerr. Besides having me take new MRI's including the brain (never had this one before) he is taking me off Cymbalta and starting me up on Neurontin ( 100 mg per day). He saw no reason to be taking Cymbalta as I am already taking Lyrica and according to the new Dr. both Cymbalta and Lyrica do the same thing and taking both of them is not effective it is just overkill. I wonder if any of the other members who are taking both Lyrica and Cymbalta were ever told this.and what should I expect from the neurontin? I am hoping it will help the banding. What negative side effects have any of you suffered with the neurontin? Thx Rob in New Jersey
RE: [TMIC] Ampyra
Ampyra is the same drug that I was on...that drug was a compound drug called 4-Amenopyridine which is a potassium channel blockerthe Ampyra is the same drug but it is not componded and you can get it thru any pharmacy. It should help the banding feeling as well as the pins and needles. After I see how my body reacts to Lyrica and Neurontin I may still try the Ampyra... Rob in New Jersey From: Janice Nichols [mailto:jan...@centurytel.net] Sent: Monday, May 17, 2010 11:58 AM To: tmic-list@eskimo.com Subject: [TMIC] Ampyra I am going to talk to my doc about taking Ampyra. Are any of you on it?If so, what do you think of it? I have a friend with MS who is starting to take it. Janice
[TMIC] Thank you
Thank all of you for your help with Neurontin...last question...what dosages are you all taking Finally I welcome the fact that New Jersey has adopted Medical Marijuanaon a personal level no drug has ever taken away the discomfort of TM more than Pot. I woukldn't work,or drive on itbut if you are just home and chillin out nothing works better for me! And I have been on this particular drug for more than 40 years! Rob in New Jersey
Re: [TMIC] Thank you
Thank youI need to check this out for Missouri! I take 1800 mgs of neurontin - was taking 2100, but was sleeping too hard at nite. I take 1 with breakfast, 2 at lunch, and 2 at dinner. Then at 8:30, I take 2 baclofen for leg spasms when I go to bed. Works pretty well. Janice From: Robert Pall Sent: Monday, May 17, 2010 12:35 PM To: tmic-l...@eskimo.net Subject: [TMIC] Thank you Thank all of you for your help with Neurontin.last question.what dosages are you all taking.. Finally I welcome the fact that New Jersey has adopted Medical Marijuana..on a personal level no drug has ever taken away the discomfort of TM more than Pot. I woukldn't work,or drive on it..but if you are just home and chillin out nothing works better for me! And I have been on this particular drug for more than 40 years! Rob in New Jersey
RE: [TMIC] Thank you
Hi All I am not sure about the States, but here in BC the Medical Marijuana that I was on was in pill form. Did nothing. Cranked up the dose, did nothing. Cost me a darn pretty penny too - $700.00 for a one month supply. I would have been better off to talk to my son's friends, paid my money, and smoked my chances! Janet From: Janice Nichols [mailto:jan...@centurytel.net] Sent: May 17, 2010 11:26 AM To: Robert Pall; tmic-l...@eskimo.net Subject: Re: [TMIC] Thank you I need to check this out for Missouri! I take 1800 mgs of neurontin - was taking 2100, but was sleeping too hard at nite. I take 1 with breakfast, 2 at lunch, and 2 at dinner. Then at 8:30, I take 2 baclofen for leg spasms when I go to bed. Works pretty well. Janice From: Robert Pall mailto:rp...@neillsupply.com Sent: Monday, May 17, 2010 12:35 PM To: tmic-l...@eskimo.net Subject: [TMIC] Thank you Thank all of you for your help with Neurontin.last question.what dosages are you all taking.. Finally I welcome the fact that New Jersey has adopted Medical Marijuana..on a personal level no drug has ever taken away the discomfort of TM more than Pot. I woukldn't work,or drive on it..but if you are just home and chillin out nothing works better for me! And I have been on this particular drug for more than 40 years! Rob in New Jersey
RE: [TMIC] Thank you
Janice: I assume you are referring to Marinol...which I was on for a couple of yearsnever made me highalways made me hungry...never made my body feel better! Rob in New Jersey PS: And I too tried increasing the dosage big time and it still just made me hungry! From: Janet Dunn [mailto:j.d...@shaw.ca] Sent: Monday, May 17, 2010 2:47 PM To: 'Janice Nichols'; Robert Pall; tmic-l...@eskimo.net Subject: RE: [TMIC] Thank you Hi All I am not sure about the States, but here in BC the Medical Marijuana that I was on was in pill form. Did nothing. Cranked up the dose, did nothing. Cost me a darn pretty penny too - $700.00 for a one month supply. I would have been better off to talk to my son's friends, paid my money, and smoked my chances! Janet From: Janice Nichols [mailto:jan...@centurytel.net] Sent: May 17, 2010 11:26 AM To: Robert Pall; tmic-l...@eskimo.net Subject: Re: [TMIC] Thank you I need to check this out for Missouri! I take 1800 mgs of neurontin - was taking 2100, but was sleeping too hard at nite. I take 1 with breakfast, 2 at lunch, and 2 at dinner. Then at 8:30, I take 2 baclofen for leg spasms when I go to bed. Works pretty well. Janice From: Robert Pall mailto:rp...@neillsupply.com Sent: Monday, May 17, 2010 12:35 PM To: tmic-l...@eskimo.net Subject: [TMIC] Thank you Thank all of you for your help with Neurontin...last question...what dosages are you all taking Finally I welcome the fact that New Jersey has adopted Medical Marijuanaon a personal level no drug has ever taken away the discomfort of TM more than Pot. I woukldn't work,or drive on itbut if you are just home and chillin out nothing works better for me! And I have been on this particular drug for more than 40 years! Rob in New Jersey
Re: [TMIC]I tried Marinol too
Marinol didn't work, Then I travelled to Montreal, to the McGill University Health Center within the Montreal General Hospital to Dr. Ware on the 19th floor where he tried me on sativex. One spray under my tongue decreased my pain by 75% within ten minutes. SATIVEX lasts longer than Cannabis and has a brief period of slight euphoria. Sativex has changed my life. F
Re: [TMIC] Neurontin
You don't have to stick with this Dr. just because Dr. Kerr recommended him. the advantage of taking Lyrica over Neurontin if you don't have side effects is that it is more effective at vastly smaller dosages : 75 mg rather than 300 mg several times a day. I have taken the combination of lyrica and cymbalta together for 2 years, Cymbalta is an antidepressant which for some unknown reason helps reduce nerve damage pain as a positive side effect. I requested it because i felt like jumping off a cliff to stop the pain and I was depressed and angry about contracting TM. I went off Cymbalta when I felt ready to face living again. never tried neurontin and I've been told if I 'm doing well on Lyrica not to switch. My neuro dumped me as a patient because he said I had a 4 in a million chance of a reoccurrence and any well informed family Dr, could manage my pain treatment. this has worked really well for me, my Dr. reads whatever info I hand her about TM and she asks me what meds you all on the tmic list are taking. I now take 75 mg lyrica am 50 mg pm amantadine to counter the drowziness. a blood pressure med and a prescription antacid/reflux. Mindy King we4king...@verizon.net On May 17, 2010, at 8:42 AM, Robert Pall wrote: I went last week to a new Neuro recommended to me by Dr. Kerr. Besides having me take new MRI's including the brain (never had this one before) he is taking me off Cymbalta and starting me up on Neurontin ( 100 mg per day). He saw no reason to be taking Cymbalta as I am already taking Lyrica and according to the new Dr. both Cymbalta and Lyrica do the same thing and taking both of them is not effective it is just overkill. I wonder if any of the other members who are taking both Lyrica and Cymbalta were ever told this… and what should I expect from the neurontin? I am hoping it will help the banding. What negative side effects have any of you suffered with the neurontin? Thx Rob in New Jersey
[TMIC] 21st anniversary!
Today, May 17th, makes 21 years since I became a ventilator dependent quadriplegic due to acute transverse myelitis. I was 21 when it happened so it has now been half my life. I woke up that morning with a sore shoulder. Thinking I just slept in a wrong position I went to work. After about 30 minutes the pain in my shoulder increased and I started feeling dizzy. I tried to stand up but could not. Someone helped me lay down. In a short amount of time I remember a paramedic asking me my age, I tried to answer but could not talk. I found out I had stopped breathing. The next memory I have is waking up in the hospital unable to move or speak. Transverse Myelitis is an inflammatory attack in the spinal cord. It is an auto immune disorder where a persons own immune system mistakenly attacks and destroys myelin, the insulating material that surrounds nerves. There is no known cause or cure. It can happen to anyone at any age. In 2008, the Transverse Myelitis Association has established the James Timothy Lubin Fellowship in Rare Neuroimmunologic Disorders. The purpose of the Fellowship is to encourage the development of medical specializations in TM, ADEM and NMO through a year of study under a leading TM, ADEM or NMO specialist. If you think this is a worthy cause and would like to make a tax deductible donation to support it, you can do so using this link http://www.myelitis.org/fellowship-donation Jim Lubin jlu...@eskimo.com http://makoa.org/jim disAbility Resources: http://www.makoa.org
Re: [TMIC] 21st anniversary!
Hi Jim, If you don't mind, I'm going to post this at the NMO site also. We have a lot of TMA members there and I'm sure that there are some who would definitely like to donate. Yer a peach! Gracie
RE: [TMIC]I tried Marinol too
I was on cesamet. Janet From: fr...@franksheldon.com [mailto:fr...@franksheldon.com] Sent: May 17, 2010 1:07 PM To: Janet Dunn; 'Janice Nichols'; 'Robert Pall'; tmic-l...@eskimo.net Subject: Re: [TMIC]I tried Marinol too Marinol didn't work, Then I travelled to Montreal, to the McGill University Health Center within the Montreal General Hospital to Dr. Ware on the 19th floor where he tried me on sativex. One spray under my tongue decreased my pain by 75% within ten minutes. SATIVEX lasts longer than Cannabis and has a brief period of slight euphoria. Sativex has changed my life. F
Re: [TMIC] Ampyra
My pins and needles feeling has settled down quite a bit.Don't know if that is because of neurontin since the beginning of TM or it just faded with time. I am curious about the pro's and con's with Ampyra. Janice From: Robert Pall Sent: Monday, May 17, 2010 12:08 PM To: Janice Nichols ; tmic-l...@eskimo.net Subject: RE: [TMIC] Ampyra Ampyra is the same drug that I was on...that drug was a compound drug called 4-Amenopyridine which is a potassium channel blockerthe Ampyra is the same drug but it is not componded and you can get it thru any pharmacy. It should help the banding feeling as well as the pins and needles. After I see how my body reacts to Lyrica and Neurontin I may still try the Ampyra... Rob in New Jersey From: Janice Nichols [mailto:jan...@centurytel.net] Sent: Monday, May 17, 2010 11:58 AM To: tmic-list@eskimo.com Subject: [TMIC] Ampyra I am going to talk to my doc about taking Ampyra. Are any of you on it? If so, what do you think of it? I have a friend with MS who is starting to take it. Janice
Re: [TMIC] Thank you
Thank youIt is really strange the way meds affect us all differently. What works for one, won't work for another. All we can do is try. Janice From: Janet Dunn Sent: Monday, May 17, 2010 1:46 PM To: 'Janice Nichols' ; 'Robert Pall' ; tmic-l...@eskimo.net Subject: RE: [TMIC] Thank you Hi All I am not sure about the States, but here in BC the Medical Marijuana that I was on was in pill form. Did nothing. Cranked up the dose, did nothing. Cost me a darn pretty penny too - $700.00 for a one month supply. I would have been better off to talk to my son's friends, paid my money, and smoked my chances! Janet From: Janice Nichols [mailto:jan...@centurytel.net] Sent: May 17, 2010 11:26 AM To: Robert Pall; tmic-l...@eskimo.net Subject: Re: [TMIC] Thank you I need to check this out for Missouri! I take 1800 mgs of neurontin - was taking 2100, but was sleeping too hard at nite. I take 1 with breakfast, 2 at lunch, and 2 at dinner. Then at 8:30, I take 2 baclofen for leg spasms when I go to bed. Works pretty well. Janice From: Robert Pall Sent: Monday, May 17, 2010 12:35 PM To: tmic-l...@eskimo.net Subject: [TMIC] Thank you Thank all of you for your help with Neurontin.last question.what dosages are you all taking.. Finally I welcome the fact that New Jersey has adopted Medical Marijuana..on a personal level no drug has ever taken away the discomfort of TM more than Pot. I woukldn't work,or drive on it..but if you are just home and chillin out nothing works better for me! And I have been on this particular drug for more than 40 years! Rob in New Jersey
Re: [TMIC]I tried Marinol too
How expensive was it? Janice From: fr...@franksheldon.com Sent: Monday, May 17, 2010 3:07 PM To: Janet Dunn ; 'Janice Nichols' ; 'Robert Pall' ; tmic-l...@eskimo.net Subject: Re: [TMIC]I tried Marinol too Marinol didn't work, Then I travelled to Montreal, to the McGill University Health Center within the Montreal General Hospital to Dr. Ware on the 19th floor where he tried me on sativex. One spray under my tongue decreased my pain by 75% within ten minutes. SATIVEX lasts longer than Cannabis and has a brief period of slight euphoria. Sativex has changed my life. F
Re: [TMIC]I tried Marinol too
What is cesamet and what does it do for you? Janice From: Janet Dunn Sent: Monday, May 17, 2010 9:52 PM To: fr...@franksheldon.com ; 'Robert Pall' ; tmic-l...@eskimo.net Subject: RE: [TMIC]I tried Marinol too I was on cesamet. Janet From: fr...@franksheldon.com [mailto:fr...@franksheldon.com] Sent: May 17, 2010 1:07 PM To: Janet Dunn; 'Janice Nichols'; 'Robert Pall'; tmic-l...@eskimo.net Subject: Re: [TMIC]I tried Marinol too Marinol didn't work, Then I travelled to Montreal, to the McGill University Health Center within the Montreal General Hospital to Dr. Ware on the 19th floor where he tried me on sativex. One spray under my tongue decreased my pain by 75% within ten minutes. SATIVEX lasts longer than Cannabis and has a brief period of slight euphoria. Sativex has changed my life. F
[TMIC] Where TM struck
I did not get many replies to my asking where people were living when TM struck them. Actually, it was really scattered. Sorry. Janice
RE: [TMIC]I tried Marinol too
Cesamet was the medical marijuana that I was on - and it did nothing. Except cost me money. Janet From: Janice Nichols [mailto:jan...@centurytel.net] Sent: May 17, 2010 8:55 PM To: Janet Dunn; fr...@franksheldon.com; 'Robert Pall'; tmic-l...@eskimo.net Subject: Re: [TMIC]I tried Marinol too What is cesamet and what does it do for you? Janice From: Janet Dunn mailto:j.d...@shaw.ca Sent: Monday, May 17, 2010 9:52 PM To: fr...@franksheldon.com ; 'Robert mailto:rp...@neillsupply.com Pall' ; tmic-l...@eskimo.net Subject: RE: [TMIC]I tried Marinol too I was on cesamet. Janet
