I saw the consultant for the first time in July and had the letter in early August. The letter said parkinsonism of unknown cause and RLS, it mention concerns about MSA and a request for an MRI ,which I had on 19th Aug. the Letter said a 2-3 month follow up nothing yet (we going on holiday in 11 days so expect letter to come whilst way). On another note letter with first appointment says that if you have to change appointment you could be discharged back to GP and to start process again (42 weeks waiting list).
Anyway to cut the waffle I also have Asperger’s which is sending my mind all over the place . I’m only on treatment for RLS at the moment and that affects my mood which then starts my Asperger’s going off on tangents. So I don’t know what to think.
PD+MSA+RLS+Asperger’s = a recipe for something
Johan
Hello Johan,
I’m sorry to hear you have the complication of PD (or MSA) to combine with Asperger’s. PD alone is plenty to have to deal with!
I’m recently diagnosed (just over a year) with PD after a series of tests and consultations with three neurologists - the last one ruling out suspected MSA - P. I have quite classic Parkinson’s symptoms including RLS and REM sleep disorder for which I take meds that affect my general daytime mood. I also have general dyspraxia which makes me even more clumsy and lacking in mobility and confidence generally.
Your story sounds very similar to mine in some respects and I’d suggest checking the MSA Trust website for more detailed info about MSA.
Depending on your stage of Parkinsonism frequent falls are seemingly uncommon in the early part of the progression - this is why it was suspected I may have MSA which does present with falls and balance issues early on. I’ve had several falls in the last year - luckily none of which have been too serious - and my dyspraxia combined with PD and the meds seems to be the root cause of these.
It’s a rocky road to diagnosis and I sympathise with you when you say the combination of your conditions is not at all helpful.
With time in front of a specialist doctor being at such a premium I have found the Parkinson’s Nurses to be excellent at helping to unpack what symptoms are related and what are not. If you haven’t been allocated a PD nurse you might want to ask for one from your neurology department at the hospital. Alternatively, the helpline on this website is really good too.
Hope this is helpful.
All the best
Jon
