I'm Sophie, 28, from the Netherlands. For the last 6 / 7 years I'm having al kind of neurological symtoms. I had endless tests but the doctors don't have a clue what is wrong with me. So for now I have: an unexplained neurological movement disorder. I write a blog about my life: Sophiebrain.wordpress.com
Symtoms: pain, spasms, tremor, cramps, stiffness, tiredness, sleeping problems, bloodpressure droppes, always cold etc.....
My GP gave me in April pramipexle (Mirapex) as an experiment and at everybodies surprise it worked great. I have hardly any spasms (myoclonus) any more and am less stiff.
After months of waiting I just got an daT-scan, which was negative. So no parkinson. In the same emails of the results, my neurologist suggest to do an IBZM scan later for parkinson plus.
Wednesday I see him again. I have so many questions, but I know he has no real answers. All the the illnesses that are easely checkeble are checked. The only thing he can do is keep an eye on me and wait. Waiting for what. The last couple of years I got worse. And even with the medication is is obvious that it only helps for the symtoms not the cause.
For the daT-scan I was off meds. Then it was really noticeble that I'm getting sicker. I cound't move my facial muscles at all any more. Walking was only possible indoors and so many spasms I cound't do a thing.
Now it's getting clear that my meds are wearing off. I need more to get the same results.
Plan of questions for the doc wednesday:
- How much chance does I have of parkinson plus (MSA)?
- How are my vitals doing? (Bloodpressure, heart, sleeping problems etc)
- What to do with the meds?
- Is there other meds I can try.
I'm scared, I'm worried and don't have many people to say this to. I don't want to get my family more worried (and they don't like to talk about it anyway).
So now I'm here, a PD friend told me about it. I hope you accept a PD look-a-like instead of a real one....
Thank you for reading, and I feel better now because I got it off my chest.