Candy all you have to do is create a facebook page. I couldn't do it but my daughter sit it up for me. Once you do that all you have to do is find a facebook member request to be friended, that person can accept you as a friend and then set you up with our several TM sites. We have one just for us gals, then a general one for both men and women. It sure sounds like you have been through h - - l. There are plenty of us who can relate and give you plenty of advice.
Good luck Patti in Wisconsin On Thu, Feb 16, 2012 at 10:21 PM, Cansadia Dykes <kandyd...@yahoo.com> wrote: > i apologize again. I know I responded previously (had some family > issues)but not sure to whom or when. I'll start over. I was initially > diagnosed with neurosarcoidosis (this was tentative), they tried to rule out > MS (think they have), back to ground of TM. However, TM should either turn > into MS or NMO (Neuromyelitis Optika - which I do not have). So I did more > research and found a category of NMO Spectrum disorder. This fits my > illness so far. Persons who remain in a TM status but may continue to have > relapses etc. I continue to have "relapses". Had one in October > (Thoracic), increased my steriods back to 40 a day and changed me > to CellCept. I have now had new lesions this month (February) in my > cervical spine (this is a new area). Really having problems with walking > and dragging both feet, my gait if off, memory loss, tightness, light a > vice around my torso, back pain, and awful pain at the base of my neck up to > my ears. Cannot lay flat on my back of my head. To painful > > I currently take Neurontin, Wellbutrin, CellCept, Cymbalta, Prednisone, > Provilgil, Keflex, Zanaflex, Vitamin D, Lovaza, Folbe, Aciphex, Aspirin and > Lipitor. Vicodin prn. > > I plan to see my neurologist next week and will insist on plasma Pharisees. > Everything I have researched indicates this is the best choice at this > point. I had asked for this earlier (wished I had insisted). This would > allow my blood to be cleaned as best it could and then allow the cellcept to > work on keeping the (This is what I call them) goblins from ganging up on my > immune system. > > Steroids have destroyed my body. I am now steroid dependent. Docs are > hoping to get me down to 10 to 15 a day. Have just have cataract surgery > on my eyes. Had pelvic fractures, didn't know how I did it (one of the > worst pains you can ever have). Due to my first diagnosis (Spine tumor) had > damage to my spine which has caused me to have loss of sensation from my > waist down. This is a really weird feeling. Have to be extra careful since > I do not know when I have cut myself, stepped on anything hot or cold, etc. > > Thanks for listening. This week was crazy. My mother in law passed away > Monday (she was 91 had a great life), became a grandmother for the first > time (of course the MOST beautiful baby in the world - think all new > granny's say that and then found out about my new lesions). > > Can't wait until next week (tee hee) > > PS - I haven't learned how to go to anyone's blog, use twitter or facebook. > would like to learn since someone indicated you can reach out and touch > more folks that way. > > Candy > > ________________________________ > From: Janice Nichols <jan...@centurytel.net> > To: Pat Cooley <patticoole...@gmail.com>; Cansadia Dykes > <kandyd...@yahoo.com> > Cc: tmic-list@eskimo.com > Sent: Sunday, February 5, 2012 11:05 AM > Subject: Re: [TMIC] what do i do > > Candy, > > Patti in right. Just tell your story, state any questions you may have > (or concerns), and we will try to help you. We have members that have > been here from 1 year to 25 years. Many tell of family support, > if friend's support, location, vocation if not retired, how much help > doctor's have been with medications, etc. Most of us are on similar > medications. We call ourselves "TM'ers" for Transverse Myelitis. > At this point, what problems did TM leave you with. Most of us also have > problems with our bladders and bowels. > > You can answer all of these or none of them. It is up to you. You > will find that there really isn't much that hasn't been brought up and > discussed, after all, we are all fighting the same battle. We are > very open with each other. > > My best to you, > Janice, Missouri > > > -----Original Message----- From: Pat Cooley > Sent: Sunday, February 05, 2012 9:16 AM > To: Cansadia Dykes > Cc: tmic-list@eskimo.com > Subject: Re: [TMIC] what do i do > > Candy welcome to our TM group. I am sorry it had to be under these > circumstances. What we usually do is tell your story which we can all > relate to. Feel free to ask any questions that you may have and > someone will try to answer it. Also, we also have several Facebook > sites you can join if you are interested; and are on FB. If so, > befriend me and I will add. The FB site is a busy one so you will be > able to reach more of us with your questions. If interested, you can > find me under Pat Cooley. > > Patti in Wisconsin > > On Sat, Feb 4, 2012 at 9:06 PM, Cansadia Dykes <kandyd...@yahoo.com> wrote: >> hi, I am new so not sure how to learn about others who may be having the >> same illness as me. >> thank you. >> >> Candy > > > > >
