Re: [TMIC] Looking for input.
Thank you Barbara, I had never thought to do that. One of the most frustrating things for me is right before bedtime. I remember not being able to really get comfy until I voided my bladder, even if I was settled in, I would have to get to go before sleep. Now I push before bedtime only to get a couple pushes to get most of it out but I just can't get the rest out no matter how hard I push. I just hate it. I never even thought to try again, I figured that was it. And, thought I had done enough pushing for one night just to get out the little bit I did. I have wet the bed twice and it is very embarrassing to admit. My husband has been really good at making me feel like I have nothing to be embarrassed about. Honestly, those two times when I woke I have never felt such an empty bladder. Isn't that crazy??? Something that seems so awful makes you feel relieved for those couple times. Argghhh - it is emotionally difficult to get my arms around all of this. So thank you, I will try that tonight. Bridget On Sun, Sep 9, 2012 at 9:08 PM, Barbara H. barbara...@gmail.com wrote: My doctor encouraged something called double voiding - going to the bathroom, then coming back in a few minutes to go again. It's frustrating sometimes not to be able to get it all done at once, but it helps. Barbara H. Http:// barbarah.wordpress.com Sent from my iPhone On Sep 9, 2012, at 9:10 PM, Janice Nichols jan...@centurytel.net wrote: I did self cathing for about 2 years.I no longer have to do it.I can now clear my bladder on my own. Keep us posted. Janice *From:* Ibridgets ibridg...@gmail.com *Sent:* Saturday, September 08, 2012 6:56 PM *To:* jan...@centurytel.net *Cc:* jcs...@yahoo.com ; xbeecla...@gmail.com ; j.d...@shaw.ca ; tmic-list@eskimo.com *Subject:* Re: [TMIC] Looking for input. I will be calling the TX urogynecology association on Monday to make an appt and see how quickly I can get in. Apparently she has some type of therapy she can do in her office and if that doesn't work it will be self cath. I will let u all know how it works as soon as I have my first appt and will let u know how this appt goes and I am praying for all of us. Sent via the Samsung Galaxy S™ II Skyrocket™, an ATT 4G LTE smartphone. Original message Subject: Re: [TMIC] Looking for input. From: Janice Nichols jan...@centurytel.net To: Bridget Skinner ibridg...@gmail.com CC: john snodgrass jcs...@yahoo.com,Elizabeth Clark xbeecla...@gmail.com,Janet Dunn j.d...@shaw.ca,tmic-list@eskimo.com Well at least you have found some answers. That is always a plus. Let me know how the bladder retention goes – I think most of us have a problem in some way with our bladders and it will be interesting to see what they find with you. Thank you for sharing – we appreciate it. Janice *From:* Bridget Skinner ibridg...@gmail.com *Sent:* Saturday, September 08, 2012 5:49 PM *To:* Janice Nichols jan...@centurytel.net *Cc:* john snodgrass jcs...@yahoo.com ; Elizabeth Clarkxbeecla...@gmail.com; Janet Dunn j.d...@shaw.ca ; tmic-list@eskimo.com *Subject:* Re: [TMIC] Looking for input. I wanted to let you know as promised that i FINALLY got insurance in place and I saw my neurologist. I have something called myoclonus and am being treated for the jerking. The twitching in my fingers is because of my brain knowing how to type fast and my spine is keeping it to do so. I understand what he told me but it is difficult to explain. But, the jerking and the twitching are different. The inflammation from the TM did a number on my spine but at least the jerking isn't as scary knowing it can, and is, being treated. I feel relieved and hope the medication works. I have a referral to see someone about my bladder retention issues also.Thank you for your support. On Tue, Jun 26, 2012 at 7:46 AM, Janice Nichols jan...@centurytel.netwrote: Bridget, Are you sure you can’t get into the doc until August?Have you told them your symptoms and they still refuse until August? How about seeing your yearly doc you saw before TM? He/she could probably get you in way before August. I have taken both Neurontin and Lyrica.I am back on Neurontin after trying Lyrica.Lyrica caused a lot of swelling in feet and ankles. Some prefer it and have no problems. As far as the urinating problem - I think most of us have that problem.The important thing is that you are able to completely void your bladder. Do you have problems wetting during the night or are you able to feel enough to wake up to go to the bathroom? Again, the important part is voiding the bladder. I think it is important to get into the doc soon.You can call his office, ask to speak to his/her nurse and explain what is happening to you. Be adamant that you need to be seen quickly after having convulsions/seizures.I would think that would get their attention, if not, find a doc who
Re: [TMIC] Looking for input.
I wanted to let you know as promised that i FINALLY got insurance in place and I saw my neurologist. I have something called myoclonus and am being treated for the jerking. The twitching in my fingers is because of my brain knowing how to type fast and my spine is keeping it to do so. I understand what he told me but it is difficult to explain. But, the jerking and the twitching are different. The inflammation from the TM did a number on my spine but at least the jerking isn't as scary knowing it can, and is, being treated. I feel relieved and hope the medication works. I have a referral to see someone about my bladder retention issues also.Thank you for your support. On Tue, Jun 26, 2012 at 7:46 AM, Janice Nichols jan...@centurytel.netwrote: Bridget, Are you sure you can’t get into the doc until August?Have you told them your symptoms and they still refuse until August? How about seeing your yearly doc you saw before TM? He/she could probably get you in way before August. I have taken both Neurontin and Lyrica.I am back on Neurontin after trying Lyrica.Lyrica caused a lot of swelling in feet and ankles. Some prefer it and have no problems. As far as the urinating problem - I think most of us have that problem.The important thing is that you are able to completely void your bladder. Do you have problems wetting during the night or are you able to feel enough to wake up to go to the bathroom? Again, the important part is voiding the bladder. I think it is important to get into the doc soon.You can call his office, ask to speak to his/her nurse and explain what is happening to you. Be adamant that you need to be seen quickly after having convulsions/seizures.I would think that would get their attention, if not, find a doc who will see you. Your first neurologist will send the info on you to the new one. Good luck and please keep in touch with us with your progress with these issues. Janice *From:* Bridget Skinner ibridg...@gmail.com *Sent:* Monday, June 25, 2012 9:32 PM *To:* john snodgrass jcs...@yahoo.com *Cc:* Janice Nichols jan...@centurytel.net ; Elizabeth Clarkxbeecla...@gmail.com; Janet Dunn j.d...@shaw.ca ; tmic-list@eskimo.com *Subject:* Re: [TMIC] Looking for input. Thank you so much for replyingit's so nice to hear other experiences. I am so sorry what you are going through and I totally understand the million other symtoms that come along as soon as you lose one. I too am on 80 mg of baclofen (seems like the magic number) and have been for awhile. It is possible, I guess, that after awhile your body starts to tolerate the meds. They started me on baclofen when I was still in the hospital. I was just starting to feel parts of my legs and it was excruciating pain. (at least I could feel, I thought). and they gradually increased the baclofen to 80. like i said I am so scared and can't get in until August 1st to see my neurologist. I try to take as many precautions as possible not to hurt myself but when I am thrashing or convulsing or whatever it is the left side of my head, in the front, hurts so bad. On Mon, Jun 25, 2012 at 8:33 PM, john snodgrass jcs...@yahoo.com wrote: the baclofin took care of my thrashing around. my wife said i was terrible to sleep with,,said i almost kicked her out of bed. @ 80 mg a day took that away.then a host of other meds for a host of other symptomsuggg! -- *From:* Bridget Skinner ibridg...@gmail.com *To:* Janice Nichols jan...@centurytel.net *Cc:* Elizabeth Clark xbeecla...@gmail.com; Janet Dunn j.d...@shaw.ca; tmic-list@eskimo.com *Sent:* Monday, June 25, 2012 8:16 PM *Subject:* Re: [TMIC] Looking for input. A question is coming I promise: I can relate to all of these different sensations. I live in texas and am terrified about the cold weather which won't be coming for quite sometime, but it scares me. Maybe that's because it was so cold when in was diagnosed and my hands would feel completely curled up in a ball and while I could pick things up I was unable to set them down. I take Baclofen for the spastiscity and muscle spasms and I am so thankful that it takes care of that type of pain. After being paralyzed and having to learn to walk again the feeling that was coming back was pain I had never felt before and was so hard to describe. As far as nerve pain goes I take Neurontin. Has anyone been on Neurontin and Lyrica at different times and can try to give a description as to how one works better than the other. My problem is that the Neurontin takes care of most of nerve pain but my hands continue to twitch and when I wake up in the morning my feet and ankles have such a horrible sensation that I feel like I need to go to the hospital - it's that bad (i would not go to the hospital again unless I ABSOLUTELY had to after the time I spent there - a month was long enough for me) Has
Re: Fw: [TMIC] wheel Chairs
I am so happy for you. I know what a relief that must be for you. I remember worrying about worrying about having something to help me ambulate when I left the hospital and the hospital gave me, via charity , a walker and a top of the line tub chair that I still have to use. I am so blessed and am almost in tears every time I tell the story. Someday I will be able to pay it forward and I really can't wait for that day to come. Congratulations. On Thu, Aug 2, 2012 at 3:47 PM, Todd Tarno toddtm2...@sbcglobal.net wrote: My parents just got me the EV-rider, Mini Rider-Portable, that can break down into 4 parts for easy moving. http://www.evrider.com/mini-rider-mobilizer.html I've only got to use it once so far, but it was a lot of FUN!!! *Todd in CC, TX* - Forwarded Message *From:* Butcher, Bernie (SFS) bernie.butc...@honeywell.com *To:* James Berg molokai...@gmail.com; tmic-l...@eskimo.net tmic-l...@eskimo.net *Sent:* Thu, August 2, 2012 6:22:33 AM *Subject:* RE: [TMIC] wheel Chairs Electric or manual? *Bernie* -- *From:* James Berg [mailto:molokai...@gmail.com] *Sent:* Wednesday, August 01, 2012 5:36 PM *To:* tmic-l...@eskimo.net *Subject:* [TMIC] wheel Chairs I keep buying wheel chairs that are junk. Does anyone have a model to recommend?
Fwd: [TMIC] try this
I believe I didn't send this to the whole group when I replied. And if I did, I apologize for sending it again. I was concerned about using the Aspercreme Heat Pain Relieving Gel because of my inability to feel heat but my husband had a good idea -- just try it on one little spot and if it bothers me than its an easy wipe off. Well it didn't --- I take 80mg a day of Baclofen and still have problems although it REALLY helps me. 20mg 4x a day. Doc is going to keep me at that. So, I thought I would just get used to what it isn't taking care of. Went to CVS this evening and purchased the Fast Acting Therapy Aspercreme Heat Pain Relieving Gel Hopefully this is the right kind. (little nervous since I can't feel heat) But I am so excited to see if this works. I will use it tonight and let y'all know how it worked for me. Please, if anyone has tried it and has problems with topical pain or the inability to feel heat let me know if it makes a difference. THANK YOU Forwarded conversation Subject: [TMIC] try this From: *jeff bernier* jeffsmokeea...@yahoo.com Date: Thu, Jul 26, 2012 at 10:16 AM To: tmic-list@eskimo.com, msersl...@yahoogroups.com for those of you with problems with spastisity heres a trick i learned.i have a baclofen pump and take 5 mg clonipin daily and still get spasms in my legs.i have found that aspercream hot for arthritis works outstanding,i had heard this from another person with ms and it worked. -- From: *john snodgrass* jcs...@yahoo.com Date: Thu, Jul 26, 2012 at 10:28 AM To: tmic-list@eskimo.com tmic-list@eskimo.com i had heard of using hot muscle rub but never tried it but i might now. thanks Jeff -- *From:* jeff bernier jeffsmokeea...@yahoo.com *To:* tmic-list@eskimo.com; msersl...@yahoogroups.com *Sent:* Thursday, July 26, 2012 11:16 AM *Subject:* [TMIC] try this for those of you with problems with spastisity heres a trick i learned.i have a baclofen pump and take 5 mg clonipin daily and still get spasms in my legs.i have found that aspercream hot for arthritis works outstanding,i had heard this from another person with ms and it worked. -- From: *Janice Nichols* jan...@centurytel.net Date: Thu, Jul 26, 2012 at 10:32 AM To: jeff bernier jeffsmokeea...@yahoo.com, tmic-list@eskimo.com, msersl...@yahoogroups.com Thanks.I take baclofen and it works most every nite, but then I have the occasional problem nite. Will try aspercream. Janice *From:* jeff bernier jeffsmokeea...@yahoo.com *Sent:* Thursday, July 26, 2012 10:16 AM *To:* tmic-list@eskimo.com ; msersl...@yahoogroups.com *Subject:* [TMIC] try this for those of you with problems with spastisity heres a trick i learned.i have a baclofen pump and take 5 mg clonipin daily and still get spasms in my legs.i have found that aspercream hot for arthritis works outstanding,i had heard this from another person with ms and it worked. -- From: ** em...@telephonelady.com Date: Thu, Jul 26, 2012 at 12:43 PM To: jeff bernier jeffsmokeea...@yahoo.com, tmic-list@eskimo.com, msersl...@yahoogroups.com ** Do you put it directly on the muscles that are spasing? Sent from my Verizon Wireless BlackBerry -- *From: * jeff bernier jeffsmokeea...@yahoo.com *Date: *Thu, 26 Jul 2012 08:16:02 -0700 (PDT) *To: *tmic-list@eskimo.com; msersl...@yahoogroups.com *Subject: *[TMIC] try this for those of you with problems with spastisity heres a trick i learned.i have a baclofen pump and take 5 mg clonipin daily and still get spasms in my legs.i have found that aspercream hot for arthritis works outstanding,i had heard this from another person with ms and it worked. -- From: *Bridget Skinner* ibridg...@gmail.com Date: Thu, Jul 26, 2012 at 7:59 PM To: Janice Nichols jan...@centurytel.net I take 80mg a day of Baclofen and still have problems although it REALLY helps me. 20mg 4x a day. Doc is going to keep me at that. So, I thought I would just get used to what it isn't taking care of. Went to CVS this evening and purchased the Fast Acting Therapy Aspercreme Heat Pain Relieving Gel Hopefully this is the right kind. (little nervous since I can't feel heat) But I am so excited to see if this works. I will use it tonight and let y'all know how it worked for me. Please, if anyone has tried it and has problems with topical pain or the inability to feel heat let me know if it makes a difference. THANK YOU
Re: [TMIC] try this
*Sorry I twitched and hit the send button too early. Anyway, it didn't bother me at all. I used it knees to toes. Made all the difference in the world. When I have taken my baclofen and still hurt this is the way to go. You would think morphine and norco would take care of these sensations but they take care of other types of pain - not spastisity or nerve pain. Thank you for the tip. It's nice to use something that I can pick up something at the store that really works and I don't need to see a doc first. * On Fri, Jul 27, 2012 at 8:26 AM, Bridget Skinner ibridg...@gmail.comwrote: *I believe I didn't send this to the whole group when I replied. And if I did, I apologize for sending it again. * *I was concerned about using the Aspercreme Heat Pain Relieving Gel because of my inability to feel heat but my husband had a good idea -- just try it on one little spot and if it bothers me than its an easy wipe off. Well it didn't * --- I take 80mg a day of Baclofen and still have problems although it REALLY helps me. 20mg 4x a day. Doc is going to keep me at that. So, I thought I would just get used to what it isn't taking care of. Went to CVS this evening and purchased the Fast Acting Therapy Aspercreme Heat Pain Relieving Gel Hopefully this is the right kind. (little nervous since I can't feel heat) But I am so excited to see if this works. I will use it tonight and let y'all know how it worked for me. Please, if anyone has tried it and has problems with topical pain or the inability to feel heat let me know if it makes a difference. THANK YOU Forwarded conversation Subject: [TMIC] try this From: *jeff bernier* jeffsmokeea...@yahoo.com Date: Thu, Jul 26, 2012 at 10:16 AM To: tmic-list@eskimo.com, msersl...@yahoogroups.com for those of you with problems with spastisity heres a trick i learned.i have a baclofen pump and take 5 mg clonipin daily and still get spasms in my legs.i have found that aspercream hot for arthritis works outstanding,i had heard this from another person with ms and it worked. -- From: *john snodgrass* jcs...@yahoo.com Date: Thu, Jul 26, 2012 at 10:28 AM To: tmic-list@eskimo.com tmic-list@eskimo.com i had heard of using hot muscle rub but never tried it but i might now. thanks Jeff -- *From:* jeff bernier jeffsmokeea...@yahoo.com *To:* tmic-list@eskimo.com; msersl...@yahoogroups.com *Sent:* Thursday, July 26, 2012 11:16 AM *Subject:* [TMIC] try this for those of you with problems with spastisity heres a trick i learned.i have a baclofen pump and take 5 mg clonipin daily and still get spasms in my legs.i have found that aspercream hot for arthritis works outstanding,i had heard this from another person with ms and it worked. -- From: *Janice Nichols* jan...@centurytel.net Date: Thu, Jul 26, 2012 at 10:32 AM To: jeff bernier jeffsmokeea...@yahoo.com, tmic-list@eskimo.com, msersl...@yahoogroups.com Thanks.I take baclofen and it works most every nite, but then I have the occasional problem nite. Will try aspercream. Janice *From:* jeff bernier jeffsmokeea...@yahoo.com *Sent:* Thursday, July 26, 2012 10:16 AM *To:* tmic-list@eskimo.com ; msersl...@yahoogroups.com *Subject:* [TMIC] try this for those of you with problems with spastisity heres a trick i learned.i have a baclofen pump and take 5 mg clonipin daily and still get spasms in my legs.i have found that aspercream hot for arthritis works outstanding,i had heard this from another person with ms and it worked. -- From: ** em...@telephonelady.com Date: Thu, Jul 26, 2012 at 12:43 PM To: jeff bernier jeffsmokeea...@yahoo.com, tmic-list@eskimo.com, msersl...@yahoogroups.com ** Do you put it directly on the muscles that are spasing? Sent from my Verizon Wireless BlackBerry -- *From: * jeff bernier jeffsmokeea...@yahoo.com *Date: *Thu, 26 Jul 2012 08:16:02 -0700 (PDT) *To: *tmic-list@eskimo.com; msersl...@yahoogroups.com *Subject: *[TMIC] try this for those of you with problems with spastisity heres a trick i learned.i have a baclofen pump and take 5 mg clonipin daily and still get spasms in my legs.i have found that aspercream hot for arthritis works outstanding,i had heard this from another person with ms and it worked. -- From: *Bridget Skinner* ibridg...@gmail.com Date: Thu, Jul 26, 2012 at 7:59 PM To: Janice Nichols jan...@centurytel.net I take 80mg a day of Baclofen and still have problems although it REALLY helps me. 20mg 4x a day. Doc is going to keep me at that. So, I thought I would just get used to what it isn't taking care of. Went to CVS this evening and purchased the Fast Acting Therapy Aspercreme Heat Pain Relieving Gel Hopefully this is the right kind. (little nervous since I can't feel heat) But I am so excited to see if this works. I will use it tonight
Re: [TMIC] try this
Wow, you just answered so many of my questions. I have a neurologist
appointment that took a month to get, on August 1. I have been so worried
and sometimes afraid to go to sleep because usually when these twitches, or
my head jerking or whatever is going on happens when I wake up. Whether in
the middle of the night or in the morning but is usually MUCH worse if I
wake up in the middle of the night. I have even ended up in the ER when I
woke from a nap and had what my husband called convulsions. I could go on
and on but I know we are on a whole other topic. But, THANK
YOU...didn't know what all that was. Scary.
On Fri, Jul 27, 2012 at 2:31 PM, john snodgrass jcs...@yahoo.com wrote:
this is good news!
and found this out as far as a definition of one of the nice things we
suffer with:
*Clonus* (from the Greek for violent, confused motion) is a series of
involuntary, rhythmic http://en.wikipedia.org/wiki/Rhythmic, muscular
contractions http://en.wikipedia.org/wiki/Muscular_contraction and
relaxations. Clonus is a sign of
certainneurologicalhttp://en.wikipedia.org/wiki/Neurological conditions,
particularly associated with upper motor
neuronhttp://en.wikipedia.org/wiki/Upper_motor_neuron
lesions http://en.wikipedia.org/wiki/Lesion involving descending motor
pathways, and in many cases is, accompanied by
spasticityhttp://en.wikipedia.org/wiki/Spasticity (another
form of hyperexcitability http://en.wikipedia.org/wiki/Hyperexcitability
).[1] http://en.wikipedia.org/wiki/Clonus#cite_note-Reference_2-0 Unlike
small, spontaneous twitches known as
fasciculationshttp://en.wikipedia.org/wiki/Fasciculation (usually
caused by lower motor
neuronhttp://en.wikipedia.org/wiki/Lower_motor_neuronpathology),
clonus causes large motions that are usually initiated by a
reflexhttp://en.wikipedia.org/wiki/Reflex.
Studies have shown clonus beat
frequencyhttp://en.wikipedia.org/wiki/Frequency to
range from 3- 8 Hz (Hertz http://en.wikipedia.org/wiki/Hertz) on
average, and may last a few seconds to several minutes depending on the
patient’s
condition.[1]http://en.wikipedia.org/wiki/Clonus#cite_note-Reference_2-0
(i called it the jerks)
{º¿º}
~
--
*From:* Janice Nichols jan...@centurytel.net
*To:* Bridget Skinner ibridg...@gmail.com; tmic-list@eskimo.com;
msersl...@yahoogroups.com
*Sent:* Friday, July 27, 2012 12:04 PM
*Subject:* Re: [TMIC] try this
Guys, this is really encouraging!!I am going to try it too.
Janice
*From:* Bridget Skinner ibridg...@gmail.com
*Sent:* Friday, July 27, 2012 10:07 AM
*To:* tmic-list@eskimo.com ; msersl...@yahoogroups.com
*Subject:* Re: [TMIC] try this
*Sorry I twitched and hit the send button too early. Anyway, it didn't
bother me at all. I used it knees to toes. Made all the difference in the
world. When I have taken my baclofen and still hurt this is the way to go.
You would think morphine and norco would take care of these sensations but
they take care of other types of pain - not spastisity or nerve pain. Thank
you for the tip. It's nice to use something that I can pick up something at
the store that really works and I don't need to see a doc first.
*
On Fri, Jul 27, 2012 at 8:26 AM, Bridget Skinner ibridg...@gmail.comwrote:
*I believe I didn't send this to the whole group when I replied. And if I
did, I apologize for sending it again. *
*I was concerned about using the Aspercreme Heat Pain Relieving Gel
because of my inability to feel heat but my husband had a good idea -- just
try it on one little spot and if it bothers me than its an easy wipe off.
Well it didn't *
---
I take 80mg a day of Baclofen and still have problems although it REALLY
helps me. 20mg 4x a day. Doc is going to keep me at that. So, I thought I
would just get used to what it isn't taking care of. Went to CVS this
evening and purchased the Fast Acting Therapy Aspercreme Heat Pain
Relieving Gel Hopefully this is the right kind. (little nervous since I
can't feel heat) But I am so excited to see if this works. I will use it
tonight and let y'all know how it worked for me.
Please, if anyone has tried it and has problems with topical pain or the
inability to feel heat let me know if it makes a difference.
THANK YOU
Forwarded conversation
Subject: *[TMIC] try this*
From: *jeff bernier* jeffsmokeea...@yahoo.com
Date: Thu, Jul 26, 2012 at 10:16 AM
To: tmic-list@eskimo.com, msersl...@yahoogroups.com
for those of you with problems with spastisity heres a trick i
learned.i have a baclofen pump and take 5 mg clonipin daily and still get
spasms in my legs.i have found that aspercream hot for arthritis works
outstanding,i had heard this from another person with ms and it worked.
--
From: *john snodgrass* jcs...@yahoo.com
Date: Thu, Jul 26, 2012 at 10:28 AM
To: tmic-list@eskimo.com tmic-list@eskimo.com
i had heard of using
[TMIC] Subscribe
Re: [TMIC] Looking for input.
Wow, Janice! I wish I would have taken your advice sooner. The reason I couldn't get in to my neurologist, in my mind, was because my insurance doesn't go into effect until July 15. But, they still couldn't get me in until August 1. I ended up in the emergency room last night. I was having convulsions, fell down. bit my lip and tongue and couldn't speak. The entire time convulsing. My husband called 911. After many ER tests, brain scan, blood work, xray for pneumonia, etc. I had a 103 degree fever and they couldn't find anything else. They let me go saying it was most likely a virus causing the fever. I am just getting around today and i will be calling the doc as soon as noon hour is up. I just can't believe that is it. Of course they didn't scan my spine. This is gonna cost a fortune. I want to trust what the er says but before i was diagnosed with TM i went to an emergency room 3 times, paralyzed, and they only did brain scans and as soon as we decided on a new emergency room they ran a spinal scan did they admit me and, soon after, diagnose me with TM This thing going on right now is a whole different type of scary. Can't be compared. Of course being paralyzed and all of the things that led up to complete paralysis from the waste down is by far the scariest thing that ever happened. But this thing is pretty bad. Now I am just afraid to go to sleep because I don't want to wake up convulsing. It only happens when I wake from a sleep. On Tue, Jun 26, 2012 at 7:46 AM, Janice Nichols jan...@centurytel.netwrote: Bridget, Are you sure you can’t get into the doc until August?Have you told them your symptoms and they still refuse until August? How about seeing your yearly doc you saw before TM? He/she could probably get you in way before August. I have taken both Neurontin and Lyrica.I am back on Neurontin after trying Lyrica.Lyrica caused a lot of swelling in feet and ankles. Some prefer it and have no problems. As far as the urinating problem - I think most of us have that problem.The important thing is that you are able to completely void your bladder. Do you have problems wetting during the night or are you able to feel enough to wake up to go to the bathroom? Again, the important part is voiding the bladder. I think it is important to get into the doc soon.You can call his office, ask to speak to his/her nurse and explain what is happening to you. Be adamant that you need to be seen quickly after having convulsions/seizures.I would think that would get their attention, if not, find a doc who will see you. Your first neurologist will send the info on you to the new one. Good luck and please keep in touch with us with your progress with these issues. Janice *From:* Bridget Skinner ibridg...@gmail.com *Sent:* Monday, June 25, 2012 9:32 PM *To:* john snodgrass jcs...@yahoo.com *Cc:* Janice Nichols jan...@centurytel.net ; Elizabeth Clarkxbeecla...@gmail.com; Janet Dunn j.d...@shaw.ca ; tmic-list@eskimo.com *Subject:* Re: [TMIC] Looking for input. Thank you so much for replyingit's so nice to hear other experiences. I am so sorry what you are going through and I totally understand the million other symtoms that come along as soon as you lose one. I too am on 80 mg of baclofen (seems like the magic number) and have been for awhile. It is possible, I guess, that after awhile your body starts to tolerate the meds. They started me on baclofen when I was still in the hospital. I was just starting to feel parts of my legs and it was excruciating pain. (at least I could feel, I thought). and they gradually increased the baclofen to 80. like i said I am so scared and can't get in until August 1st to see my neurologist. I try to take as many precautions as possible not to hurt myself but when I am thrashing or convulsing or whatever it is the left side of my head, in the front, hurts so bad. On Mon, Jun 25, 2012 at 8:33 PM, john snodgrass jcs...@yahoo.com wrote: the baclofin took care of my thrashing around. my wife said i was terrible to sleep with,,said i almost kicked her out of bed. @ 80 mg a day took that away.then a host of other meds for a host of other symptomsuggg! -- *From:* Bridget Skinner ibridg...@gmail.com *To:* Janice Nichols jan...@centurytel.net *Cc:* Elizabeth Clark xbeecla...@gmail.com; Janet Dunn j.d...@shaw.ca; tmic-list@eskimo.com *Sent:* Monday, June 25, 2012 8:16 PM *Subject:* Re: [TMIC] Looking for input. A question is coming I promise: I can relate to all of these different sensations. I live in texas and am terrified about the cold weather which won't be coming for quite sometime, but it scares me. Maybe that's because it was so cold when in was diagnosed and my hands would feel completely curled up in a ball and while I could pick things up I was unable to set them down. I take Baclofen for the spastiscity and muscle spasms
Re: [TMIC] Looking for input.
A question is coming I promise: I can relate to all of these different sensations. I live in texas and am terrified about the cold weather which won't be coming for quite sometime, but it scares me. Maybe that's because it was so cold when in was diagnosed and my hands would feel completely curled up in a ball and while I could pick things up I was unable to set them down. I take Baclofen for the spastiscity and muscle spasms and I am so thankful that it takes care of that type of pain. After being paralyzed and having to learn to walk again the feeling that was coming back was pain I had never felt before and was so hard to describe. As far as nerve pain goes I take Neurontin. Has anyone been on Neurontin and Lyrica at different times and can try to give a description as to how one works better than the other. My problem is that the Neurontin takes care of most of nerve pain but my hands continue to twitch and when I wake up in the morning my feet and ankles have such a horrible sensation that I feel like I need to go to the hospital - it's that bad (i would not go to the hospital again unless I ABSOLUTELY had to after the time I spent there - a month was long enough for me) Has this happened to anyone. Another question: Has anyone had any convulsions or seizures when they wake up? Not sure what to call them but whenever I wake up, no matter what time, My head thrashes forward than back a few times and it almost seems I have no control over my body. I have to hold onto the ceramic part of the sink so I won't hit it. I have already hit the bridge of my nose and chipped a tooth in doing so. I don't know what to call this but I have made an appt with my neurologist but can't get in until August 1 and am really scared. Also, I have a problem urinating. I have to push really hard no matter how bad I have to go. In conclusion, I would really like to know what works best for nerve pain, whether Neurontin or or Lyrica. Neurontin works other than the bottom bart of my legs. I should be grateful that it works that well, it is much better than what I went through before the scripts were ordered. But am curious about Lyrica. My neurologist mentioned it as an alternative but as I said the neurontin was working so well(other than the lower half that I didn't want to change anything.) Thank you for listening - I know we all have different experiences with our own Transverse Myelitis and I appreciate your time. Wish I could find a support group nearby. While I can't donate just yet I will be able to do so in September and it will be very worth it. On Mon, Jun 25, 2012 at 6:50 PM, Janice Nichols jan...@centurytel.netwrote: I would start with Baclofen first - I think it works great.You need to take all through the day, morning, noon and night.It really does help a lot. Janice *From:* Elizabeth Clark xbeecla...@gmail.com *Sent:* Monday, June 25, 2012 2:36 PM *To:* 'Janet Dunn' j.d...@shaw.ca ; tmic-list@eskimo.com *Subject:* RE: [TMIC] Looking for input. Coincidentally, someone from a different TM support group recently expressed similar difficulty and here’s a response that may be of help…*** * “Hi all, I am new to this group and was hoping you folks could give me some advice. I am recovering from transverse myelitis. I was unable to walk for six months and had complete paralysis from the waist down for three months. I am now able to walk again, but have severe hypersensitivity to hot and cold and get stabbing pain in my legs particularly at night. What do some of you do for the pain? I am looking to avoid narcotics and habit forming medications. Any advice you have would be greatly appreciated.” --- “My relief came from flexeral (sp) which helped the spasms and cymbalta, which helped with the neuropathic pain. When I get localized brutal nerve pain in my spine (rare), only tramadol helps.” *From:* Janet Dunn j.d...@shaw.ca *Sent:* Monday, June 25, 2012 12:29 AM *To:* tmic-list@eskimo.com *Subject:* [TMIC] Looking for input. Hello Everyone - not sure who is on here anymore. I have written in before, several times in fact, bemoaning the issues that I have with the cold cold winters that we get up here in northeastern BC. Now, it is the heat. My question is this: does excessive heat cause issues like the cold does? I have never noticed it before, but this year I quit taking Lyrica, and I cannot get the spasming in my leg to stop, no matter what I try. I am wondering if stopping the lyrica has contributed to the increase in pain, or if it is heat related? Thanks for your input. Janet
Re: [TMIC] Looking for input.
Thank you so much for replyingit's so nice to hear other experiences. I am so sorry what you are going through and I totally understand the million other symtoms that come along as soon as you lose one. I too am on 80 mg of baclofen (seems like the magic number) and have been for awhile. It is possible, I guess, that after awhile your body starts to tolerate the meds. They started me on baclofen when I was still in the hospital. I was just starting to feel parts of my legs and it was excruciating pain. (at least I could feel, I thought). and they gradually increased the baclofen to 80. like i said I am so scared and can't get in until August 1st to see my neurologist. I try to take as many precautions as possible not to hurt myself but when I am thrashing or convulsing or whatever it is the left side of my head, in the front, hurts so bad. On Mon, Jun 25, 2012 at 8:33 PM, john snodgrass jcs...@yahoo.com wrote: the baclofin took care of my thrashing around. my wife said i was terrible to sleep with,,said i almost kicked her out of bed. @ 80 mg a day took that away.then a host of other meds for a host of other symptomsuggg! -- *From:* Bridget Skinner ibridg...@gmail.com *To:* Janice Nichols jan...@centurytel.net *Cc:* Elizabeth Clark xbeecla...@gmail.com; Janet Dunn j.d...@shaw.ca; tmic-list@eskimo.com *Sent:* Monday, June 25, 2012 8:16 PM *Subject:* Re: [TMIC] Looking for input. A question is coming I promise: I can relate to all of these different sensations. I live in texas and am terrified about the cold weather which won't be coming for quite sometime, but it scares me. Maybe that's because it was so cold when in was diagnosed and my hands would feel completely curled up in a ball and while I could pick things up I was unable to set them down. I take Baclofen for the spastiscity and muscle spasms and I am so thankful that it takes care of that type of pain. After being paralyzed and having to learn to walk again the feeling that was coming back was pain I had never felt before and was so hard to describe. As far as nerve pain goes I take Neurontin. Has anyone been on Neurontin and Lyrica at different times and can try to give a description as to how one works better than the other. My problem is that the Neurontin takes care of most of nerve pain but my hands continue to twitch and when I wake up in the morning my feet and ankles have such a horrible sensation that I feel like I need to go to the hospital - it's that bad (i would not go to the hospital again unless I ABSOLUTELY had to after the time I spent there - a month was long enough for me) Has this happened to anyone. Another question: Has anyone had any convulsions or seizures when they wake up? Not sure what to call them but whenever I wake up, no matter what time, My head thrashes forward than back a few times and it almost seems I have no control over my body. I have to hold onto the ceramic part of the sink so I won't hit it. I have already hit the bridge of my nose and chipped a tooth in doing so. I don't know what to call this but I have made an appt with my neurologist but can't get in until August 1 and am really scared. Also, I have a problem urinating. I have to push really hard no matter how bad I have to go. In conclusion, I would really like to know what works best for nerve pain, whether Neurontin or or Lyrica. Neurontin works other than the bottom bart of my legs. I should be grateful that it works that well, it is much better than what I went through before the scripts were ordered. But am curious about Lyrica. My neurologist mentioned it as an alternative but as I said the neurontin was working so well(other than the lower half that I didn't want to change anything.) Thank you for listening - I know we all have different experiences with our own Transverse Myelitis and I appreciate your time. Wish I could find a support group nearby. While I can't donate just yet I will be able to do so in September and it will be very worth it. On Mon, Jun 25, 2012 at 6:50 PM, Janice Nichols jan...@centurytel.netwrote: I would start with Baclofen first - I think it works great.You need to take all through the day, morning, noon and night.It really does help a lot. Janice *From:* Elizabeth Clark xbeecla...@gmail.com *Sent:* Monday, June 25, 2012 2:36 PM *To:* 'Janet Dunn' j.d...@shaw.ca ; tmic-list@eskimo.com *Subject:* RE: [TMIC] Looking for input. Coincidentally, someone from a different TM support group recently expressed similar difficulty and here’s a response that may be of help…*** * “Hi all, I am new to this group and was hoping you folks could give me some advice. I am recovering from transverse myelitis. I was unable to walk for six months and had complete paralysis from the waist down for three months. I am now able to walk again, but have severe hypersensitivity to hot and cold
