if you have a family Doc,they could refer you for another opinion. there seams to be more going on here than meets the eye. hard to find a happy middle ground in neurological medicine,while one Doc will pit you to sleep another will let you scream with pain and anguish. never be satisfied,always pay attention to your body and if one mechanic you hired dont satisfy you with the repair procedure go to another garage.
although we cant rid ourselves of all discomfort,,some things indicate further immediate attention! don't wait....get on the phone! Your the boss! ________________________________ From: Janice Nichols <[email protected]> To: Bridget Skinner <[email protected]>; john snodgrass <[email protected]> Cc: Elizabeth Clark <[email protected]>; Janet Dunn <[email protected]>; [email protected] Sent: Tuesday, June 26, 2012 8:46 AM Subject: Re: [TMIC] Looking for input. 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 Sent: Monday, June 25, 2012 9:32 PM To: john snodgrass Cc: Janice Nichols ; Elizabeth Clark ; Janet Dunn ; [email protected] Subject: Re: [TMIC] Looking for input. Thank you so much for replying....it'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 <[email protected]> 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 symptoms,,,,uggg! > > >________________________________ > From: Bridget Skinner <[email protected]> >To: Janice Nichols <[email protected]> >Cc: Elizabeth Clark <[email protected]>; Janet Dunn <[email protected]>; >[email protected] >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 <[email protected]> wrote: > >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 >>Sent: Monday, June 25, 2012 2:36 PM >>To: 'Janet Dunn' ; [email protected] >>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 >>Sent:Monday, June 25, 2012 12:29 AM >>To:[email protected] >>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 > > >
