Were you given resources?
Upon receiving your diagnosis did anyone give you resources on your diagnosis and what to expect?
A big no on the contrary I was told not to look up anything related to the illness as all the data available is baseless n I simply have to enjoy what ever time is left with me..😭😭😭
that’s so sadistic and cruel. This is why we need more accessible resources such as this site! absoulutely
-I was given my diagnosis by my neuroimmuologist. She told me NOT to google NMO because it would scare me to death. She explained what is was but my mind was whirling I couldnt begin to tell you what she said. She handed me a paper with good websites to look at that catered to NMO patients. Guthy-Jackson, Sumaria, SNRA and such. However, it took me 6 months to even look at them. If I had questions, I emailed or called my doctor, nurse or nurse practioner. it feels like a fever dream every time I’m at the doctor. I completely understand that! I’m glad questions were answered for you, I wish there was easier ways to understand the answers to the questions we have. I keep a journal. I dont write in it everyday. I try to use it for unusual things or symptoms I havent talked with the dr. about. If you are on FB-there is a great group that is moderated by some experts at Harvard Medical . The Neuroimmunology Clinic (Formally NMO Clinic)
Lots of good information and links for participating in panels and clinical trials. I have learned a lot by being on panels with other NMO patients. It has helped in ways I never thought it could. My mental health is so-so. I have days that I force myself to get up and go to work. I have to keep working because its my only insurance and I was turned down twice disability. Its a vicious cycle.
I had 2 attacks in 2015 and diagnosed January 2016. The first neurologist I had gave me nothing for info. He said NMO was so rare, there was no information on it. He would state questions he thought I would have like, what is your life going to be like or how long do we think you will live and then answer with we don't know. If I asked about a particular pain or problem he would say here's a pill for that. I went 12 to 18 months & then was changed to a different neurologist - thank goodness! I am still with this one, who is very upbeat, gives me latest news & info on NMO, access to classes for MS/NMO patients. I am SO fortunate to have this neurologist!!
That is amazing you found someone dedicated to the educational aspect of diagnosis!
