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
