Very quick history; Diagnosed with ME/CFS 8 years ago but about 5 years ago noticed a tremor (resting and in movement) in my right hand. I ignored it as was told it was part of the ME thing but is has got worse over the years and has spread through my right side and into my left hand. My balance has got very bad (fall over alot) and I shuffle my feet, my speech has become very slurred and stuttered, my memory is dreadful, my muscles are weak, stiff and painful, I'm very clumsy and can't use my hands properly, my voice is quieter, my handwriting has changed(right handed), and my right arm doesn't move freely when I walk.

I've had MRI, lumbar puncture and loads of blood tests which all came back normal. After much begging for further help I was put on Sinemet Plus 6 months ago starting with half a tablet twice a day. I'm now on one tablet four times a day and it's great. The tremors have really calmed down and the muscle pain and stiffness has really eased up. My head feels less foggy and I can concentrate and think properly for the first time in ages, even my arm moves more freely when I walk. The tablets last on average 4 hours and I can feel when they are wearing off but they kick in within 20mins. That first pill in the morning is wonderful, just feeling the fog lft and your body loosen up.

I've just seen a neurologist (rural area, he only visits the hospital one day every 2 weeks) and he says it's still ME/CFS and that the response to Sinemet means nothing. He has allowed me to keep taking it but surely having such a positive response to it must mean something?
Obviously I don't want to have a parkinsons related thing but right now I don't care because the pills work. What do you all think? Any advice gladly taken.
D.

Please seek examination by a movement disorder specialist (MDS) and/or a neurologist familiar with movement disorders (MD). I was dx'd with FMS in 2003, developed all sorts of additional symptoms NOT consistent with FMS in 2006 and went through rounds and rounds of testing with 2 primary docs and 4 different neurologists (none MDS and/or MD trained/specialized)- one said he thought perhaps a MD (the only neuro doc to even check out my arm and leg movements!), the other 3 told me it was just FMS and that I was just refusing to accept it. One was SO bad/rude she told me she would have to 'see' my symptoms happening to believe me, and she believed I was in severe denial of my anxiety/stress issues that I required 'mental therapy'.

I finally got the name of a neuro doc treating PD patients, had to beg to get in to see him where the clinic is referral only and even my primary doc had turned me away. I saw him first in late March where he ran more and mroe blood tests. In early April I saw him for second time and all my tests (like everything else I've had done so far) came back normal. I too have had MRI's- spine, brain(twice), lumbar puncture, EMG/NVS tests, EEG, autoimmune test after autoimmune test and other blood tests for Lyme, Wilson's, Syphillis- you name it! He told me I definitely have a movement disorder and he was quite disgusted that all these docs had blown me off for so long.

I worry that your symptoms are too advanced for early PD, they sound more like late PD, but PD is SO different for every patient that I know it very well could be possible you have PD. A positive response to Sinemet, to my understanding, is a good thing- and I believe only common to PD and a few other MD's. I'm not sure about CFS/ME- but that's autoimmune and I would not think a positive Sinemet response would show up... but I don't know.

Hang in there and please keep us posted. Get to a MDS (travel out of state if you have to!), preferrably, for real movement evaluations- many PD patients go years and years with mis-diagnosis, that's a fact!

I forgot to mention that I'm 33 and live in a very rural area of England and specialists are not easy to find. I did however have a very nice phone call back from a nurse at a UK Parkinson's organization. I told her I didn't know whether I should be speaking to her as I don't have PD but she was so helpful and kind and said it didn't matter and she was glad to help. I explained my situation and asked whether the Sinemet response was worth further looking into, even though the neuro said it wasn't. She said it definately was something to take notice of and gave me 3 people to contact, a PD nurse and another doctor are actually at my local hospital and I will be contacting them on Monday. I couldn't believe how helpful she was and she spoke to me for 25mins(I didn't even pay for the call, she rang me) and told me what to ask for and who to speak to, it was amazing. I just wish I had this kind of support and information from my own doctors.

I gives you hope and the strength to keep fighting for a diagnosis (whatever that may be) even after all the brick walls you come up against in the medical profession when you speak to someone you've never met, like the people on these boards, and they reassure you that you're not crazy or an annoyance but someone who needs help.