I went to see my neurologist yesterday. First time since getting all the results back, and it was, well interesting. I’ll give the low down and then ask my questions…
so my neurologist is actually really quite lovely. He’s a nice guy, first thing he asked me was how I was feeling. So I told him the truth, I had been feeling down (well truthfully more than that cause I’m struggling to be positive at the moment) which he assured me was 100% normal and to carry on with my anti depressants (been on them before all this anyway) he did however tell me that my symptoms of fatigue, aches and pains etc etc may be worse because of the psychological and emotional impact of my diagnosis, which again is perfectly fine. He did however say he wanted to have my thyroid tested as I have shakes/tremors. He then went on to talk about the medication he wanted me to start, saying he would take me to the MS nurse to discuss things further. He also told me (which I knew but I think it was more for my parents needing to hear it) that the medication would not cure any of the symptoms, it is not to make me feel better but to slow the process down, so the fatigue etc I shall continue to have.
So I met an MS nurse, who was absolutely lovely. She told me she would give me info on my medication (Tecfidera) and then ring me in a few weeks to see what answer I have. To which i told her I had already looked at all info available and wanted to start taking it. So she said she would order it and it can take 4-6 weeks to arrive. She also said I did not need my next appointment to meet an MS nurse on April 1st now as it was to talk about medication so she would cancel it. She also told me to apply for PIP and a blue badge and to go to Citizens Advice to get help filling in all the forms. She also told me to get a new job after I explained a few things about my place of work and how my old manager didn’t want to get Occupational health involved as it cost too much. She wasn’t impressed to say the least.
So here are my questions:
1.) How long did it take you to accept your diagnosis and to not be scared of what the future may hold?
2.) Does anyone else with MS also have shakes/tremors or is this symptom from another cause? (Cause wasn’t sure about the thyroid test)
3.) The MS nurse said the Tecfidera would be delivered directly to my door, that I wouldn’t need to fetch it from a pharmacy and that is was free… is this correct? Because as far as I was aware none of the medication was free and we had to pay for prescriptions…
4.) Is it worth applying for PIP and blue badge? (My family want me to but unsure if it is worth all the hassle)
5.) Do work have to legally get Occupational Health involved? Because the MS nurse was disgusted that they hadn’t but I honestly have no idea.
Just incase people are wondering I’m 26, and this diagnosis came as a shock out of nowhere. Feel free to ask me anything to help answer any of this stuff or any info you want to know. And thank you for taking the time to read and answer.