Thank you, I appreciate your support. I am very nervous about it and how to learn. I will definitely need support if it comes down to it and am so glad you are here for me. You are a blessing. I will let you know. I can't wait to see how quickly I can get in when I call tomorrow. Hopefully quicker than it took to see my neurologist. It always takes about a month to get in to see him.
Bridget On Sun, Sep 9, 2012 at 8:51 PM, Janice Nichols <[email protected]>wrote: > Just remember, you do not have to be upset if it comes down to self > cathing. It is doable!! Let me know if you do self cath - I have > some > helpful hints for you. > Janice > > > *From:* Ibridgets <[email protected]> > *Sent:* Sunday, September 09, 2012 8:35 PM > *To:* [email protected] > *Cc:* [email protected] ; [email protected] ; [email protected] ; > [email protected] > *Subject:* Re: [TMIC] Looking for input. > > Wow that is so encouraging. I love hearing positive outcomes. Thank you. I > am praying for a similar outcome. > > > Sent via the Samsung Galaxy S™ II Skyrocket™, an AT&T 4G LTE smartphone. > > > -------- Original message -------- > Subject: Re: [TMIC] Looking for input. > From: Janice Nichols <[email protected]> > To: Ibridgets <[email protected]> > CC: [email protected],[email protected],[email protected], > [email protected] > > > 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 <[email protected]> > *Sent:* Saturday, September 08, 2012 6:56 PM > *To:* [email protected] > *Cc:* [email protected] ; [email protected] ; [email protected] ; > [email protected] > *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 AT&T 4G LTE smartphone. > > > -------- Original message -------- > Subject: Re: [TMIC] Looking for input. > From: Janice Nichols <[email protected]> > To: Bridget Skinner <[email protected]> > CC: john snodgrass <[email protected]>,Elizabeth Clark < > [email protected]>,Janet Dunn <[email protected]>,[email protected] > > > 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 <[email protected]> > *Sent:* Saturday, September 08, 2012 5:49 PM > *To:* Janice Nichols <[email protected]> > *Cc:* john snodgrass <[email protected]> ; Elizabeth > Clark<[email protected]>; Janet > Dunn <[email protected]> ; [email protected] > *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 <[email protected]>wrote: > >> 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 <[email protected]> >> *Sent:* Monday, June 25, 2012 9:32 PM >> *To:* john snodgrass <[email protected]> >> *Cc:* Janice Nichols <[email protected]> ; Elizabeth >> Clark<[email protected]>; Janet >> Dunn <[email protected]> ; [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 <[email protected]> >>> *Sent:* Monday, June 25, 2012 2:36 PM >>> *To:* 'Janet Dunn' <[email protected]> ; [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 <[email protected]> **** >>> *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**** >>> >>> >>> >>> >>> >> > >
