[TMIC]
http://www.iaa2.ssdrugs.com
[TMIC] question
Nature Hi everyone, I have had TM since about 7 years agoI have been reading alot of your mails I have a question about medication...I have been taking Gabapentin -2700mg a day. Recently my legs started acting up...constant shooting pins aand needles..I did go to my family Dr and she sent a request for an MRI of my head and spinal cord...the Dr has herself MS and found it funny that we have alot of simular symptoms...she is wonderinf if I do have TM or MS...she will send me to see my neuro (12 hrs away) depending on the results of my MRI (takes about 1 to 2 months)I am wondering if it is possible that Gabapentin is no longer helping me... anabnr2.gifNature Bkgrd.jpg
Re: [TMIC] question
Hi, I was on it yrs ago (have had tm since 8/13/95) , then went off it due to the cost. When it went generic,I tried it again,and it didn't work anymore. So,maybe it's possible that it loses effectiveness for some people. Cheryl in Easthampton,MA. --- On Thu, 9/16/10, Chantal Lamontagne m...@ntl.sympatico.ca wrote: From: Chantal Lamontagne m...@ntl.sympatico.caSubject: [TMIC] questionTo: tmic-list@eskimo.comDate: Thursday, September 16, 2010, 10:12 AM Hi everyone, I have had TM since about 7 years agoI have been reading alot of your mails I have a question about medication...I have been taking Gabapentin -2700mg a day. Recently my legs started acting up...constant shooting pins aand needles..I did go to my family Dr and she sent a request for an MRI of my head and spinal cord...the Dr has herself MS and found it funny that we have alot of simular symptoms...she is wonderinf if I do have TM or MS...she will send me to see my neuro (12 hrs away) depending on the results of my MRI (takes about 1 to 2 months)I am wondering if it is possible that Gabapentin is no longer helping me...
Re: [TMIC] question
NatureI have not had TM as long as you have, and I only take 1800mg a day. I have a good friend that has MS and our symptoms are very much alike.Some of the meds are the same too.Why would it take so long to get the MRI results? Janice From: Chantal Lamontagne Sent: Thursday, September 16, 2010 9:12 AM To: tmic-list@eskimo.com Subject: [TMIC] question Hi everyone, I have had TM since about 7 years agoI have been reading alot of your mails I have a question about medication...I have been taking Gabapentin -2700mg a day. Recently my legs started acting up...constant shooting pins aand needles..I did go to my family Dr and she sent a request for an MRI of my head and spinal cord...the Dr has herself MS and found it funny that we have alot of simular symptoms...she is wonderinf if I do have TM or MS...she will send me to see my neuro (12 hrs away) depending on the results of my MRI (takes about 1 to 2 months)I am wondering if it is possible that Gabapentin is no longer helping me... anabnr2.gifNature Bkgrd.jpg
[TMIC] New to TM
Hi Everyone, My husband has recently (September 2nd) been diagnosed with Idiopathic TM. He was treated at Pennsylvania Hospital under the care of a team of Neurologists. He was given mega doses of Prednisone and is currently weaning with oral prednisone. He was discharged from the hospital last Thursday and he is now working hard at an acute rehabilitation center (3-5 hours each day). He has a very positive outlook and is taking it one day at a time. My question is this..is there a support group for spouses of TM? Emily Life is not measured by the number of breaths that we take but by the moments that take our breath away. image001.jpg
Re: [TMIC] New to TM
Welcome!! We all hate the circumstances, but we welcome you and your husband with open arms. Some of the more knowledgeable of the TM'ers I am sure will weigh in on your question of support group for spouses. On the other hand, you both can and should be a part of us too.We are full of support and much information of meds we are taking, etc.We also make a good sounding board when frustration sets in. With both of you having a positive outlook, things will go much better for you. We are always here for both of you. Janice, in Missouri From: Emily Sent: Thursday, September 16, 2010 11:10 AM To: tmic-list@eskimo.com Subject: [TMIC] New to TM Hi Everyone, My husband has recently (September 2nd) been diagnosed with Idiopathic TM. He was treated at Pennsylvania Hospital under the care of a team of Neurologists. He was given mega doses of Prednisone and is currently weaning with oral prednisone. He was discharged from the hospital last Thursday and he is now working hard at an acute rehabilitation center (3-5 hours each day). He has a very positive outlook and is taking it one day at a time. My question is this..is there a support group for spouses of TM? Emily Life is not measured by the number of breaths that we take but by the moments that take our breath away. image001.jpg
RE: [TMIC] New to TM
Welcome to our site. I am sorry it took TM to find us. I too have Idiopathic TM. I was DX in June of 2008. I was in the hospital for 5 weeks and was given Prednisone with there and was sent home with a script of oral prednisone to start weaning. The TM affected my legs and of course the bladder and bowels. I had PT while there and then continued when I got home. I have since progressed to where I am able to get around the house with walker/cane, but do need a walker to my electric scooter when I go to any activity that requires a lot of walking. This group is also for the spouses or care givers. There are no questions that you cannot ask. We are all here for you and your hubby. Take care and give our best to your hubby. Patti - Wisconsin From: Emily [mailto:em...@telephonelady.com] Sent: Thursday, September 16, 2010 11:11 AM To: tmic-list@eskimo.com Subject: [TMIC] New to TM Hi Everyone, My husband has recently (September 2nd) been diagnosed with Idiopathic TM. He was treated at Pennsylvania Hospital under the care of a team of Neurologists. He was given mega doses of Prednisone and is currently weaning with oral prednisone. He was discharged from the hospital last Thursday and he is now working hard at an acute rehabilitation center (3-5 hours each day). He has a very positive outlook and is taking it one day at a time. My question is this..is there a support group for spouses of TM? Emily Life is not measured by the number of breaths that we take but by the moments that take our breath away. image001.jpg
Re: [TMIC] Medications
Keep in mind that many of the Canadian internet sites are just the overseas countries selling nothing but sugar pills. Unless you're a computer geek, you won't usually know the difference. Physically demanding as it may be, a trip to the great white north would be the way to go. But I'm no expert there. - Original Message - From: Patricia Cooley To: fr...@franksheldon.com ; 'Jill Posner' Cc: tmic-list@eskimo.com Sent: Wednesday, September 15, 2010 9:39 AM Subject: RE: [TMIC] Medications Before the U.S. had prescription insurance for social security people, we always bought my husband's scripts from Canada with no problem. There are several internet sites for Canadian pharmacies. Just google Canada pharmacies. At that time, the prices we about half what we would have paid in the U.S. We also had a local office that you could place your scripts. It is worth a try. Patti -Wisconsin From: fr...@franksheldon.com [mailto:fr...@franksheldon.com] Sent: Tuesday, September 14, 2010 3:13 PM To: Jill Posner; fr...@franksheldon.com Cc: tmic-list@eskimo.com Subject: Re: [TMIC] Medications Can a US doctor prescribe a drug only available in Canada and the UK? How does one buy it then (if not able to go to Canada to purchase it) Can it be obtained over the internet or some other way? I really don't know. My neurologist in Portland (Maine) says that he writes Rx to patients who then go to a pharmacy in Canada. My pain MD has no other US patients. Sorry F
Re: [TMIC] question
Chantal, Where in Canada do you live? I live part time in Montreal, and go to McGill University, Montreal General Hospital, Pain Clinic. Dr. MarkWare started me on Sativex which is used for pain, spasm, and alot of the other problems of TM. Take Care Frank attachment: anabnr2.gifattachment: Nature Bkgrd.jpg
Re: [TMIC] New to TM
Welcome, again. We are from all over the earth. I am in the Middle East but have a home in Queens, NY. This is a great place and everyone is helpful. Dalton From: Patricia Cooley patticoole...@gmail.com Date: Thu, 16 Sep 2010 11:59:16 -0500 To: em...@telephonelady.com, tmic-list@eskimo.com Subject: RE: [TMIC] New to TM Resent-From: tmic-list@eskimo.com Resent-Date: Thu, 16 Sep 2010 09:59:51 -0700 Welcome to our site. I am sorry it took TM to find us. I too have Idiopathic TM. I was DX in June of 2008. I was in the hospital for 5 weeks and was given Prednisone with there and was sent home with a script of oral prednisone to start weaning. The TM affected my legs and of course the bladder and bowels. I had PT while there and then continued when I got home. I have since progressed to where I am able to get around the house with walker/cane, but do need a walker to my electric scooter when I go to any activity that requires a lot of walking. This group is also for the spouses or care givers. There are no questions that you cannot ask. We are all here for you and your hubby. Take care and give our best to your hubby. Patti - Wisconsin From: Emily [mailto:em...@telephonelady.com] Sent: Thursday, September 16, 2010 11:11 AM To: tmic-list@eskimo.com Subject: [TMIC] New to TM Hi Everyone, My husband has recently (September 2nd) been diagnosed with Idiopathic TM. He was treated at Pennsylvania Hospital under the care of a team of Neurologists. He was given mega doses of Prednisone and is currently weaning with oral prednisone. He was discharged from the hospital last Thursday and he is now working hard at an acute rehabilitation center (3-5 hours each day). He has a very positive outlook and is ³taking it one day at a time². My question is thisis there a support group for spouses of TM? Emily Life is not measured by the number of breaths that we take but by the moments that take our breath away. image.jpg
[TMIC] TM Caregivers Group??
Emily, That is a great Idea !! How would you like to start the group? I know my caregiver would interested Take Care Frank attachment: image001.jpg
RE: [TMIC] New to TM
Hi EmilyI head up the NJ support group and we have had 4 meetings so far. I encourage spouses and or parents to join the TM'rs. I think it is very important for them to come to understand the problems we face every minute of every day with our condition.I guess what i am saying is that we incorporate family members within our group. Rob in New Jersey From: Emily [mailto:em...@telephonelady.com] Sent: Thursday, September 16, 2010 12:11 PM To: tmic-list@eskimo.com Subject: [TMIC] New to TM Hi Everyone, My husband has recently (September 2nd) been diagnosed with Idiopathic TM. He was treated at Pennsylvania Hospital under the care of a team of Neurologists. He was given mega doses of Prednisone and is currently weaning with oral prednisone. He was discharged from the hospital last Thursday and he is now working hard at an acute rehabilitation center (3-5 hours each day). He has a very positive outlook and is taking it one day at a time. My question is this..is there a support group for spouses of TM? Emily Life is not measured by the number of breaths that we take but by the moments that take our breath away. image001.jpg
[TMIC] RE: tmic-digest Digest V2010 #460
Janice you are a God sent. very well said re emily gerry in Mtl. Date: Thu, 16 Sep 2010 09:41:14 -0700 From: tmic-digest-requ...@eskimo.com Subject: tmic-digest Digest V2010 #460 To: tmic-dig...@eskimo.com --Forwarded Message Attachment-- tmic-digest Digest Volume 2010 : Issue 460 Today's Topics: Re: [TMIC] New to TM [ Janice Nichols jan...@centurytel ] --Forwarded Message Attachment-- Date: Thu, 16 Sep 2010 11:21:14 -0500 From: jan...@centurytel.net To: em...@telephonelady.com; tmic-list@eskimo.com Subject: Re: [TMIC] New to TM Welcome!! We all hate the circumstances, but we welcome you and your husband with open arms. Some of the more knowledgeable of the TM'ers I am sure will weigh in on your question of support group for spouses. On the other hand, you both can and should be a part of us too.We are full of support and much information of meds we are taking, etc.We also make a good sounding board when frustration sets in. With both of you having a positive outlook, things will go much better for you. We are always here for both of you. Janice, in Missouri From: Emily Sent: Thursday, September 16, 2010 11:10 AM To: tmic-list@eskimo.com Subject: [TMIC] New to TM Hi Everyone, My husband has recently (September 2nd) been diagnosed with Idiopathic TM. He was treated at Pennsylvania Hospital under the care of a team of Neurologists. He was given mega doses of Prednisone and is currently weaning with oral prednisone. He was discharged from the hospital last Thursday and he is now working hard at an acute rehabilitation center (3-5 hours each day). He has a very positive outlook and is “taking it one day at a time”. My question is this……is there a support group for spouses of TM? Emily Life is not measured by the number of breaths that we take but by the moments that take our breath away.
Re: [TMIC] New to TM
Hi Emily, a very warm welcome to both you and your hubby. You have come to the right place for support, information about meds, symptoms and pretty much anything else. We talk freely about anything and everything. Most of us have experienced it or are currently. We have a lot of spouses/caregivers who are a very important part of this TM family. It's great to hear your hubby has a positive outlook. Determination will be very helpful in his recovery. Again, welcome, and keep posting so we know how both of you are doing. Linda - Original Message - From: Emilymailto:em...@telephonelady.com To: tmic-list@eskimo.commailto:tmic-list@eskimo.com Sent: Thursday, September 16, 2010 10:10 AM Subject: [TMIC] New to TM Hi Everyone, My husband has recently (September 2nd) been diagnosed with Idiopathic TM. He was treated at Pennsylvania Hospital under the care of a team of Neurologists. He was given mega doses of Prednisone and is currently weaning with oral prednisone. He was discharged from the hospital last Thursday and he is now working hard at an acute rehabilitation center (3-5 hours each day). He has a very positive outlook and is taking it one day at a time. My question is this..is there a support group for spouses of TM? Emily Life is not measured by the number of breaths that we take but by the moments that take our breath away. image001.jpg
Fw: Re: [TMIC] another wonderful night
neurontin 400 mg 3 times a day When I was on Neurontin, I was taking 1,200 mg 3 time a day. You're only taking 1,200 mg a day and I was taking that amount 3 times a day, a total of 3,600 mg a day. I had a problem missing my second dose, but when I started to feel pain, I knew that I had missed it. I know that this is the highest a doctor want you to go, but I have seen people on even higher doses. These doses can make you a zombie or foggy. I'm now on Lyrica 150 mg twice a day. It's a lot easier for my the remember to take my medication and I don't feel the foggy and/or a zombie. I don't take the other medications that you're on. And I may not have the same pain that you have, mine it most numbness than pain. I do feel both of my feet feel like there should be flames coming off my feet. lol Hope this helps, Todd in CC, TX --- On Wed, 9/15/10, john snodgrass jcs...@yahoo.com wrote: From: john snodgrass jcs...@yahoo.com Subject: Re: [TMIC] another wonderful night To: Janice Nichols jan...@centurytel.net Cc: transverse myelitis tmic-list@eskimo.com Date: Wednesday, September 15, 2010, 5:19 PM My doc at the clinic said that if i took anything stronger that i would not be able to keep my CDL,commercial drivers licesne.I can understand that. it was a strange thing,tuesday, monday i had a great day. a little pressure in my side. that evening it started hurting. i took my meds right. after 9 when it wasnt any better i took more hydrocodone and baclofen. at 12 when things were really stressed i laid there with my legs burning and calf feeling like it was going to bust and feet felt swoolen.i slept on and off for a couple of hours and i think that the lack of rest added to the stress and added to the pain. you know,,nerve things. so i didnt dare try and go out and use my legs,probably saved a family of 4 or something..arg! i take ativan .5 mg 2 times a day neurontin 400 mg 3 times a day baclofen 20 mg 4 times a day hydrocodone 5/500 2 or 3 times a day. i realize that you and those that have been in this thing for a few years have delt with different dosses of these things,do you see anything i could do differently and be safe on the road? serroiusly, i am asking. John - Original Message From: Janice Nichols jan...@centurytel.net To: john snodgrass jcs...@yahoo.com; transverse myelitis tmic-list@eskimo.com Sent: Wed, September 15, 2010 5:56:33 PM Subject: Re: [TMIC] another wonderful night John, Tell me/us your meds you take - for pain, spasms, etc. I hate that you would have a day/night like that. Your doc should be able to keep you fairly comfortable - not that we don't all have pain, but you should be able to take something strong enough that you do not have entire days/nights with no relief. Sorry to get on my soapbox, but that kind of constant pain needs to be addressed to your doc - like in his face. Janice -- From: john snodgrass jcs...@yahoo.com Sent: Tuesday, September 14, 2010 9:36 AM To: transverse myelitis tmic-list@eskimo.com Subject: [TMIC] another wonderful night happened again! had a fairly nice day,only a little pressure in my side. thoughtthis is great,work all day literally pain free! then after work we had a safety meeting. it started! legs on fire,banding-pinching pain in side,balls on bottom of right foot,calf feels like it's going to burst,disoriented! went home and it go so bad that i was on my bed literally shouting why why why! up all night. hurting to bad to go to work. finally eased up a bit @ 10:00 am. back to normal pain. if there is such a thing! glad your here, the only people that know exactly what Im talking about.
Re: Re: [TMIC] another wonderful night
i have an appointment in October for the neuro. I am going to ask him about these meds, or I can even make an appointment with my family Dr and get stuff switched around. i definitely have to do something. thanks Todd! P.S. i understand the burning feet. my legs are starting to burn also. pluse the pain in my right thigh and right calf and right side. From: Todd Tarno toddtm2...@sbcglobal.net To: TMIC tmic-list@eskimo.com Sent: Thu, September 16, 2010 5:02:28 PM Subject: Fw: Re: [TMIC] another wonderful night neurontin 400 mg 3 times a day When I was on Neurontin, I was taking 1,200 mg 3 time a day. You're only taking 1,200 mg a day and I was taking that amount 3 times a day, a total of 3,600 mg a day. I had a problem missing my second dose, but when I started to feel pain, I knew that I had missed it. I know that this is the highest a doctor want you to go, but I have seen people on even higher doses. These doses can make you a zombie or foggy. I'm now on Lyrica 150 mg twice a day. It's a lot easier for my the remember to take my medication and I don't feel the foggy and/or a zombie. I don't take the other medications that you're on. And I may not have the same pain that you have, mine it most numbness than pain. I do feel both of my feet feel like there should be flames coming off my feet. lol Hope this helps, Todd in CC, TX --- On Wed, 9/15/10, john snodgrass jcs...@yahoo.com wrote: From: john snodgrass jcs...@yahoo.com Subject: Re: [TMIC] another wonderful night To: Janice Nichols jan...@centurytel.net Cc: transverse myelitis tmic-list@eskimo.com Date: Wednesday, September 15, 2010, 5:19 PM My doc at the clinic said that if i took anything stronger that i would not be able to keep my CDL,commercial drivers licesne.I can understand that. it was a strange thing,tuesday, monday i had a great day. a little pressure in my side. that evening it started hurting. i took my meds right. after 9 when it wasnt any better i took more hydrocodone and baclofen. at 12 when things were really stressed i laid there with my legs burning and calf feeling like it was going to bust and feet felt swoolen.i slept on and off for a couple of hours and i think that the lack of rest added to the stress and added to the pain. you know,,nerve things. so i didnt dare try and go out and use my legs,probably saved a family of 4 or something..arg! i take ativan .5 mg 2 times a day neurontin 400 mg 3 times a day baclofen 20 mg 4 times a day hydrocodone 5/500 2 or 3 times a day. i realize that you and those that have been in this thing for a few years have delt with different dosses of these things,do you see anything i could do differently and be safe on the road? serroiusly, i am asking. John - Original Message From: Janice Nichols jan...@centurytel.net To: john snodgrass jcs...@yahoo.com; transverse myelitis tmic-list@eskimo.com Sent: Wed, September 15, 2010 5:56:33 PM Subject: Re: [TMIC] another wonderful night John, Tell me/us your meds you take - for pain, spasms, etc. I hate that you would have a day/night like that. Your doc should be able to keep you fairly comfortable - not that we don't all have pain, but you should be able to take something strong enough that you do not have entire days/nights with no relief. Sorry to get on my soapbox, but that kind of constant pain needs to be addressed to your doc - like in his face. Janice -- From: john snodgrass jcs...@yahoo.com Sent: Tuesday, September 14, 2010 9:36 AM To: transverse myelitis tmic-list@eskimo.com Subject: [TMIC] another wonderful night happened again! had a fairly nice day,only a little pressure in my side. thoughtthis is great,work all day literally pain free! then after work we had a safety meeting. it started! legs on fire,banding-pinching pain in side,balls on bottom of right foot,calf feels like it's going to burst,disoriented! went home and it go so bad that i was on my bed literally shouting why why why! up all night. hurting to bad to go to work. finally eased up a bit @ 10:00 am. back to normal pain. if there is such a thing! glad your here, the only people that know exactly what Im talking about.
[TMIC] Unidentified subject!
To Emily and her Husband. TM truely is a shock to all involved. I mean,who would ever imagine this would happen. one of my Doc's said TM was something you looked at in med school but never seen it. my neurologist said all you can do is treat the symptoms and do what you can when you can as hard as you can but if you can't then just rest until you can. He incourages physical theropy and well should because the parts effected can go to sleep,so to speak,and thats another world of hurt! tell hubby to talk with us,,you talk with us,,,we are interested more than anybody in how he is doing be it good or unpleasnt as well as how you are standing up under this new world you are in! these people have encouraged me more than I can thank them for,,just being people who truely understand what I have and am suffering. we all have the hardness of this thing and understand more than anyone elsewe live it with you! my name is John. I live in WV I am the hill-billy of the bunch ;) (computer tech for 8 years tractor driver for 5) anything before that is to old From:Emily [mailto:em...@telephonelady.com] Sent: Thursday, September 16, 2010 11:11 AM To: tmic-list@eskimo.com Subject: [TMIC] New to TM Hi Everyone, My husband has recently (September 2nd) been diagnosed with Idiopathic TM. He was treated at Pennsylvania Hospital under the care of a team of Neurologists. He was given mega doses of Prednisone and is currently weaning with oral prednisone. He was discharged from the hospital last Thursday and he is now working hard at an acute rehabilitation center (3-5 hours each day). He has a very positive outlook and is “taking it one day at a time”. My question is this……is there a support group for spouses of TM? Emily
Re: [TMIC] New to TM
This is BobbyJim in Elvisland (a.k.a. Memphis, Tennessee) (no, am not a suthnr, just happen to live here --long story). Am one of the old timers in this group, September '97, when me missus came down with TM at T-8. Neither one of us knew what the heck that was... but we learned fast. Da poore gal had a second attack in Feb 99 and her then neuro changed her dx to MS. She's been on Avonex ever since and today, almost 475 shots later (peri$$$h the co$t), one can hardly tell that she's afflicted. So ask away, we're here to help. BobbyJim (a.k.a. Bobberino) -- Where in Pennsylvania are you...??? My father lived in Wilmington, Delaware for many many years. From: Emily To: tmic-list@eskimo.com Sent: Thursday, September 16, 2010 11:10 Subject: [TMIC] New to TM Hi Everyone, My husband has recently (September 2nd) been diagnosed with Idiopathic TM. He was treated at Pennsylvania Hospital under the care of a team of Neurologists. He was given mega doses of Prednisone and is currently weaning with oral prednisone. He was discharged from the hospital last Thursday and he is now working hard at an acute rehabilitation center (3-5 hours each day). He has a very positive outlook and is taking it one day at a time. My question is this..is there a support group for spouses of TM? Emily Life is not measured by the number of breaths that we take but by the moments that take our breath away. image001.jpg
[TMIC] Sativex
Sativex sounds wonderful! This sounds like something a petition campaign might work for. --
Re: Re: [TMIC] another wonderful night
From: Janice Nichols jan...@centurytel.net To: Todd Tarno toddtm2...@sbcglobal.net; TMIC tmic-list@eskimo.com Sent: Thu, September 16, 2010 7:59:18 PM Subject: Re: Re: [TMIC] another wonderful night Todd, is that flames or the smell that are coming off your feet Janice From: Todd Tarno Sent: Thursday, September 16, 2010 4:02 PM To: TMIC Subject: Fw: Re: [TMIC] another wonderful night neurontin 400 mg 3 times a day When I was on Neurontin, I was taking 1,200 mg 3 time a day. You're only taking 1,200 mg a day and I was taking that amount 3 times a day, a total of 3,600 mg a day. I had a problem missing my second dose, but when I started to feel pain, I knew that I had missed it. I know that this is the highest a doctor want you to go, but I have seen people on even higher doses. These doses can make you a zombie or foggy. I'm now on Lyrica 150 mg twice a day. It's a lot easier for my the remember to take my medication and I don't feel the foggy and/or a zombie. I don't take the other medications that you're on. And I may not have the same pain that you have, mine it most numbness than pain. I do feel both of my feet feel like there should be flames coming off my feet. lol Hope this helps, Todd in CC, TX --- On Wed, 9/15/10, john snodgrass jcs...@yahoo.com wrote: From: john snodgrass jcs...@yahoo.com Subject: Re: [TMIC] another wonderful night To: Janice Nichols jan...@centurytel.net Cc: transverse myelitis tmic-list@eskimo.com Date: Wednesday, September 15, 2010, 5:19 PM My doc at the clinic said that if i took anything stronger that i would not be able to keep my CDL,commercial drivers licesne.I can understand that. it was a strange thing,tuesday, monday i had a great day. a little pressure in my side. that evening it started hurting. i took my meds right. after 9 when it wasnt any better i took more hydrocodone and baclofen. at 12 when things were really stressed i laid there with my legs burning and calf feeling like it was going to bust and feet felt swoolen.i slept on and off for a couple of hours and i think that the lack of rest added to the stress and added to the pain. you know,,nerve things. so i didnt dare try and go out and use my legs,probably saved a family of 4 or something..arg! i take ativan .5 mg 2 times a day neurontin 400 mg 3 times a day baclofen 20 mg 4 times a day hydrocodone 5/500 2 or 3 times a day. i realize that you and those that have been in this thing for a few years have delt with different dosses of these things,do you see anything i could do differently and be safe on the road? serroiusly, i am asking. John - Original Message From: Janice Nichols jan...@centurytel.net To: john snodgrass jcs...@yahoo.com; transverse myelitis tmic-list@eskimo.com Sent: Wed, September 15, 2010 5:56:33 PM Subject: Re: [TMIC] another wonderful night John, Tell me/us your meds you take - for pain, spasms, etc. I hate that you would have a day/night like that. Your doc should be able to keep you fairly comfortable - not that we don't all have pain, but you should be able to take something strong enough that you do not have entire days/nights with no relief. Sorry to get on my soapbox, but that kind of constant pain needs to be addressed to your doc - like in his face. Janice -- From: john snodgrass jcs...@yahoo.com Sent: Tuesday, September 14, 2010 9:36 AM To: transverse myelitis tmic-list@eskimo.com Subject: [TMIC] another wonderful night happened again! had a fairly nice day,only a little pressure in my side. thoughtthis is great,work all day literally pain free! then after work we had a safety meeting. it started! legs on fire,banding-pinching pain in side,balls on bottom of right foot,calf feels like it's going to burst,disoriented! went home and it go so bad that i was on my bed literally shouting why why why! up all night. hurting to bad to go to work. finally eased up a bit @ 10:00 am. back to normal pain. if there is such a thing! glad your here, the only people that know exactly what Im talking about.
[TMIC] Digest
Just out of curiosity I counted how many TMIC Digests I got today. It was 14. Seems to be a bit too much to me. Rev. Craig Crossman First Baptist Church 615 W. Webster St. Colby, KS 67701 W - (785)462-2867/ Cell - (785)443-5154 revcross...@gmail.com www.firstbaptistcolby.org
Re: [TMIC] New to TM
Hi Emily, This place is for people with TM, spouses, family members, caregivers, etc. Sorry you have to join our family, but this is a great place for information, support, love, and understanding. Some of us have been on here for many years and it is a wonderful site. Peace, Bernie in Texas
RE: Fw: Re: [TMIC] another wonderful night
My feet burn too, in fact, lately I cannot dry the bottoms of them with a towel as it causes a very uncomfortable feeling. I do know that since I have been taking 150mg of Lyrica 2x a day, the burning is not so bad. They are just cold all the time. Even when it is smokin hot outside, the feet, they stay cold! Janet From: Akua [mailto:a...@artfarm.com] Sent: September 16, 2010 5:45 PM To: tmic-list@eskimo.com Subject: Re: Fw: Re: [TMIC] another wonderful night . I do feel both of my feet feel like there should be flames coming off my feet. lol Hope this helps, Todd in CC, TX my feet BURN too! Akua in the southenr finger lakes, NY --
[TMIC] Question
What's the difference between idopathic tm and just tm ? Diagnosed with idopathic tm 2007 -memphis tn. :) Sent via BlackBerry by ATT
RE: [TMIC] Question
Idiopathic means they don't know what caused the TM. -Original Message- From: jack...@att.blackberry.net [mailto:jack...@att.blackberry.net] Sent: Thursday, September 16, 2010 11:57 PM To: TMIC Subject: [TMIC] Question What's the difference between idopathic tm and just tm ? Diagnosed with idopathic tm 2007 -memphis tn. :) Sent via BlackBerry by ATT
[TMIC] New to TM
Thank you to everyone who responded to my initial email. It is wonderful to know that I am not in this alone. I guess misery likes company ;) Let me tell you a little about how we came to find out that my husband has TM. At the beginning of August my husband was getting constipated which is something that NEVER happens he is like clockwork each morning. After playing with this for about 1 week taking laxatives, etc. he began to get a numbing feeling in his lower left abdomen. This scared him so he made an appointment with our regular family doctor. Our doctor sent him for a cat scan of the digestive system and it was negative. Then he sent him for a colonoscopy on August 25th. On the morning of the colonoscopy he couldn't get out of bed because his left leg was totally numb. I had a walker in the garage from a previous broken ankle so I went and got him the walker and I took him to get the colonoscopy. This frightened me so while I was waiting for him to come out of recovery I called our family doctor and told him about the total numb left leg and he said to bring him into the office the following day. The family doctor said he wanted him to go for an MRI of the lower lumbar so the following Monday (August 30th). While we were waiting for that Monday to roll around the numbing got worse and he lost all use of the leg he described as dead and he was also antsy..he couldn't sit still or lay down..he seemed very agitated. During the early hours of August 30th he fell in the bedroom trying to use the urinal while holding onto the walker. I couldn't get him off the floor nor could he help me because of the dead leg so I called 911. He was taken to our local hospital's emergency ward and they cat scanned his head looking for a stroke but the cat scan was negative showing no signs of stroke. He was discharged at 8AM on August 30th and I took him directly to the MRI he was scheduled for that day. The MRI showed some stenosis in the lower lumbar region but not enough to cause this kind of numbness so our family doctor got us an emergency appointment with a neurosurgeon on Tuesday August 31st. He was admitted to the Pennsylvania Hospital in Philadelphia right from the doctor's office and additional MRIs of the thoracic spine were taken and then another one with contrast and it was in these MRIs where they could see abnormalities (lesions). He was then turned over to a team on neurologists and more tests (cat scans, blood tests, MRIs, and spinal taps) were taken. He was also tested for every known viral and/or immune disease known to mankind to include Lupus, Lyme, Herpes, HIV, Hepatitis, just to name a few. On September 3rd he was diagnosed with Idiopathic TM and that evening he was given 1000 mg of prednisone. He had 5 of these treatments and then released to an Acute Rehabilitation Hospital which is where he is right now and has been since September 9th. He is currently being weaned orally off of the steroids. He is showing progress but it is slow. He does now have the ability to lift his left leg but it is still totally numb and he must look down to see where his foot his before taking a step with the walker and assistance from the PT staff. He has no pain and the antsiness seems to have disappeared. I am now in the process of getting our toilets in our home changed to the higher off the ground toilets with grab bars installed on either side of the toilet and grab bars installed inside the shower. I am also getting the glass shower doors to our walk in shower taken down and I will replace them with a heavy duty shower curtain. Luckily we live in a one story home on a concrete slab and there are no steps that he will have to deal with. That's my story...and I am sticking to it..LOL I am sure it is similar to many others in this group. I don't like how I found all of you but I must say that I am glad you are right here at my keyboard and over the next few months I am sure I will have lots of questions. Thank you so much for being here even though it isn't in the best of circumstances of meeting people. Love to all of my new TM family..God bless all of you, Emily Meyers Columbus, New Jersey
Re: [TMIC] Digest
You mean 14 booklets in one day on TM? Would be too much for me too. There is only so much investigating you can do with TM - unless something new comes up. Janice From: Rev. Craig Crossman Sent: Thursday, September 16, 2010 7:26 PM To: tmic-list@eskimo.com Subject: [TMIC] Digest Just out of curiosity I counted how many TMIC Digests I got today. It was 14. Seems to be a bit too much to me. Rev. Craig Crossman First Baptist Church 615 W. Webster St. Colby, KS 67701 W - (785)462-2867/ Cell - (785)443-5154 revcross...@gmail.com www.firstbaptistcolby.org
Re: Fw: Re: [TMIC] another wonderful night
Re: Fw: Re: [TMIC] another wonderful nightI have similar feelings too in my feet.A couple of weeks ago I spilt some juice on my foot and my neice grabbed a cloth and started washing it off. My foot really started spasming - scared us both. I hate it when I am walking and the bottom of my foot will start to spasm - it almost makes you fall. Janice From: Janet Dunn Sent: Thursday, September 16, 2010 9:52 PM To: 'Akua' ; tmic-list@eskimo.com Subject: RE: Fw: Re: [TMIC] another wonderful night My feet burn too, in fact, lately I cannot dry the bottoms of them with a towel as it causes a very uncomfortable feeling. I do know that since I have been taking 150mg of Lyrica 2x a day, the burning is not so bad. They are just cold all the time. Even when it is smokin hot outside, the feet, they stay cold! Janet From: Akua [mailto:a...@artfarm.com] Sent: September 16, 2010 5:45 PM To: tmic-list@eskimo.com Subject: Re: Fw: Re: [TMIC] another wonderful night . I do feel both of my feet feel like there should be flames coming off my feet. lol Hope this helps, Todd in CC, TX my feet BURN too! Akua in the southenr finger lakes, NY --
Re: [TMIC] New to TM
Re: Fw: Re: [TMIC] another wonderful nightEmily, Your story is very similar to many of us. Tell your husband we were all there and with lots of work, he will most likely improve. We never know how much improvement there will be, but even after years of TM, some still find improvement. Never give up and never forget we are right here for you both. We never get tired of questions or any communication you want to make. Janice From: Emily Sent: Thursday, September 16, 2010 10:30 PM To: tmic-list@eskimo.com Subject: [TMIC] New to TM Thank you to everyone who responded to my initial email. It is wonderful to know that I am not in this alone. I guess misery likes company ;) Let me tell you a little about how we came to find out that my husband has TM. At the beginning of August my husband was getting constipated which is something that NEVER happens he is like clockwork each morning. After playing with this for about 1 week taking laxatives, etc. he began to get a numbing feeling in his lower left abdomen. This scared him so he made an appointment with our regular family doctor. Our doctor sent him for a cat scan of the digestive system and it was negative. Then he sent him for a colonoscopy on August 25th. On the morning of the colonoscopy he couldn't get out of bed because his left leg was totally numb. I had a walker in the garage from a previous broken ankle so I went and got him the walker and I took him to get the colonoscopy. This frightened me so while I was waiting for him to come out of recovery I called our family doctor and told him about the total numb left leg and he said to bring him into the office the following day. The family doctor said he wanted him to go for an MRI of the lower lumbar so the following Monday (August 30th). While we were waiting for that Monday to roll around the numbing got worse and he lost all use of the leg he described as dead and he was also antsy..he couldn't sit still or lay down..he seemed very agitated. During the early hours of August 30th he fell in the bedroom trying to use the urinal while holding onto the walker. I couldn't get him off the floor nor could he help me because of the dead leg so I called 911. He was taken to our local hospital's emergency ward and they cat scanned his head looking for a stroke but the cat scan was negative showing no signs of stroke. He was discharged at 8AM on August 30th and I took him directly to the MRI he was scheduled for that day. The MRI showed some stenosis in the lower lumbar region but not enough to cause this kind of numbness so our family doctor got us an emergency appointment with a neurosurgeon on Tuesday August 31st. He was admitted to the Pennsylvania Hospital in Philadelphia right from the doctor's office and additional MRIs of the thoracic spine were taken and then another one with contrast and it was in these MRIs where they could see abnormalities (lesions). He was then turned over to a team on neurologists and more tests (cat scans, blood tests, MRIs, and spinal taps) were taken. He was also tested for every known viral and/or immune disease known to mankind to include Lupus, Lyme, Herpes, HIV, Hepatitis, just to name a few. On September 3rd he was diagnosed with Idiopathic TM and that evening he was given 1000 mg of prednisone. He had 5 of these treatments and then released to an Acute Rehabilitation Hospital which is where he is right now and has been since September 9th. He is currently being weaned orally off of the steroids. He is showing progress but it is slow. He does now have the ability to lift his left leg but it is still totally numb and he must look down to see where his foot his before taking a step with the walker and assistance from the PT staff. He has no pain and the antsiness seems to have disappeared. I am now in the process of getting our toilets in our home changed to the higher off the ground toilets with grab bars installed on either side of the toilet and grab bars installed inside the shower. I am also getting the glass shower doors to our walk in shower taken down and I will replace them with a heavy duty shower curtain. Luckily we live in a one story home on a concrete slab and there are no steps that he will have to deal with. That's my story...and I am sticking to it..LOL I am sure it is similar to many others in this group. I don't like how I found all of you but I must say that I am glad you are right here at my keyboard and over the next few months I am sure I will have lots of questions. Thank you so much for being here even though it isn't in the best of circumstances of meeting people. Love to all of my new TM family..God bless all of you, Emily Meyers Columbus, New Jersey
Re: [TMIC] Digest
I get those, too; I don¹t know how they work. I just dump them and read the individual messages. What are they, anyway? Dalton Abu Dhabi, United Arab Emirates From: Rev. Craig Crossman revcross...@gmail.com Date: Thu, 16 Sep 2010 19:26:10 -0500 To: tmic-list@eskimo.com Subject: [TMIC] Digest Resent-From: tmic-list@eskimo.com Resent-Date: Thu, 16 Sep 2010 17:26:16 -0700 Just out of curiosity I counted how many TMIC Digests I got today. It was 14. Seems to be a bit too much to me. Rev. Craig Crossman First Baptist Church 615 W. Webster St. Colby, KS 67701 W - (785)462-2867/ Cell - (785)443-5154 revcross...@gmail.com www.firstbaptistcolby.org
Re: [TMIC] Question
It means; ³Cause unknown.² That is distinct from those cases where the cause is discovered, such as from a known viral infection opening the door for TM, or something else. Dalton Abu Dhabi, United Arab Emirates From: jack...@att.blackberry.net Reply-To: jack...@att.blackberry.net Date: Fri, 17 Sep 2010 03:56:38 + To: TMIC tmic-list@eskimo.com Subject: [TMIC] Question Resent-From: tmic-list@eskimo.com Resent-Date: Thu, 16 Sep 2010 19:57:28 -0700 What's the difference between idopathic tm and just tm ? Diagnosed with idopathic tm 2007 -memphis tn. :) Sent via BlackBerry by ATT
Re: [TMIC] New to TM
MRIs of the thoracic spine were taken and then another one with contrast and it was in these MRIs where they could see abnormalities (lesions). He was then turned over to a team on neurologists and more tests (cat scans, blood tests, MRIs, and spinal taps) were taken. He was also tested for every known viral and/or immune disease known to mankind to include Lupus, Lyme, Herpes, HIV, Hepatitis, just to name a few. Me too, the tests seemed endless and were awful. The last thing they thought it might be was cytomegalovirus a 21 day test. I was so excited thinking it might be something that then they could fix it. But no, I was idiopathic my numbness began on 9/11/2005 just below my tail bone. I went to the chiro for 4 weeks who said if it progressed to constipation to see the doctor It did, i did and the doctor couldn't get me in for a MRI anytime soon. She said if i felt any further numbness to go to emergency. About a week later, in the city I was working in, Rochester, i woke with cartoon legs, drove myself to emergency spent a weekend in the hospital where they gave me pred. and thenoral... I walked in and walked out but six weeks after that on 11/14/05 at 3:04 am after going to the bathroom, I was suddenly unable to walk, fell on the floor, crawled to the phone (my bedroom was on the second floor of my house). wriggled in some pants, called the cat stitter so emergency wouldn't break down my door to get to me. I haven't walked again and was away from my home for over two years. It was deemed idiopathic each time. But now that i know a bit more I wish i had received the blood treatment some have received and wonder if the steroids helped or hurt-- setting me up for the recurrence that has left me paralyzed. Who knows? In the beginning the tests hurt more than the condition. I hope all resolves well for your husband. He can walk and move his legs which is a great sign! Akua --
Re: [TMIC] Digest
It's not grouping for me either. I'm getting every 3 messages vs a daily digest who can we tell/call? You mean 14 booklets in one day on TM? Would be too much for me too.There is only so much investigating you can do with TM - unless something new comes up. Janice From: mailto:revcross...@gmail.comRev. Craig Crossman Sent: Thursday, September 16, 2010 7:26 PM To: mailto:tmic-list@eskimo.comtmic-list@eskimo.com Subject: [TMIC] Digest Just out of curiosity I counted how many TMIC Digests I got today. It was 14. Seems to be a bit too much to me. Rev. Craig Crossman First Baptist Church 615 W. Webster St. Colby, KS 67701 W - (785)462-2867/ Cell - (785)443-5154 mailto:revcross...@gmail.comrevcross...@gmail.com http://www.firstbaptistcolby.orgwww.firstbaptistcolby.org -- http://www.akuadesigns.etsy.com
