I was diagnosed with Parkinson’s 5 years ago, after being unwell over the last year and under going lots of tests I have just been told I have MSA and not parkinsons! Has anyone else had the same experience? As I feel a little lonely as had just got used to being part of the parkinsons community, where do I go from here?
I was originally diagnosed with parkinsons about 3 years ago and since then, well it virtually changes every visit to consultant.
Even to diagnosis of “I don’t know”.
At the moment I have a typical parkinson problem of aspirating pneumonia.
So if I had joined another forum I’d probably be on my 4th by now.
But as most of the other forums use the dreaded “book face” (don’t want sued).
I simply took the view that this is where I belong now and why would I leave the friends I’ve made on here.
I am of the opinion that you should stay where you are welcome.
This is a fantastic forum whether you have PD or Piles.
(Not at the same time though)
This is your home now and where you belong so hang around here because we need you more.
Hi jo my name is cathy im 55 was diagnosed with parkinsons 2 years ago and now have been told its msa because i started to have severe postural hypotension and was in hospital 4 weeks its been a shock i have medically retired from work i do yoga most days im on my feet and able to do most things i have 2 boys and a husband at home and try to remain as positive as i can why was your diagnosis changed ? Look forward to hearing from you x
I hope you don’t mind me throwing my tuppence into the mix.
If you read a thread on this forum called “maybe misdiagnosis” you will see plenty of good people who have had their parkinsons diagnosis changed usually after be assigned to a different neurologist.
Some after as much as 12-15 years.
Now I don’t claim to be a Hercule Poirot but all of these changes have taken place after PDUK were successful in a court case to stop the DWP re-assessment of parkinsons sufferers as the condition is degenerative.
So it’s my opinion and I must clearly state that.
The government who don’t like it up em as they used say in dad’s army (I know I’m old)
Has changed tactics by going down the NHS route.
I speak from a position of experience as I was sent to see a new consultant who is my neurologists senior and his profile on line proudly boasts that he is CLOSELY involved with the incapacity benefits reforms.
So I’m willing to guess that you are in England if not more specifically Oxfordshire.
I strongly stress again that this is my and only my opinion.
So i believe fairly soon PIP will be asking you back for re-assessment in the near future.
Incidentally I took the action of confronting the unnamed neurologist accusing him of a conflict of interest and simply sacked him to the amusement of my GP.
They just have the exact same rhetoric as you hear every Wednesday on Pmq’s that work is the best way out of poverty.
In my history books I have seen a very similar slogan over the gates of a very infamous consentration camp.
Just an observation.
Hi Cathy, thanks for the reply, I too suffer from severe postural hypotension, which at first they blamed the sinemet for. I also had lots of imbalance falls, one ending with a visit to A +E.
Although the diagnosis is not good, at least I have a reason for getting bad soon, Before i felt as if I was doing something wrong because i wasn’t coping as well as others I knew who had had PD a lot longer than me.
Jo thats strange i was exactly the same as you i was at a & e twice ending up.with stiches i felt it
Pr and a was the sinimet myself becau5because before i started any medication my only problem was i couldnt write and i was working full time how old are you ? And how have you progressed i hope you dont mind me asking x
I too had and have problems with handwriting, I was lucky at work because we had become paperless and I could still type((slowly) I was working 30 hours p r week initially doing 12 hr shifts! I am 54 and it’s only in the last year that things have become difficult. I have difficulty walking, my legs feel like they’re burning and I have poor circulation to my feet.
What is the difference between MSA and Parkinsons.
I have been feeling lately that my symptoms have been getting worse quicker.
Yesterday I actually forgot where I was for a second or two. I was shaving at the time and it was as if I fell asleep for a couple of seconds.
Jo is there anywhere on this site were i can speak or send private messages
Please excuse me being nosey but you can tell me off later however I have to warn you that I might like it. LOL
If you touch the yellow J at the top left of Jo-1’s post it will take you to a profile and at the bottom there is a little letter symbol.
Touch on that an follow the instructions and you can can send a personal message to Jo.
This applies to every post and you can even include anyone else whom you may want to get the same PM.
Looks harder written down but is much easier in practice.
Hope this is of some assistance to you.
Hi hubby, sorry you are having difficulties. MSA and Parkinson’s are two completely different conditions although the symptoms are similar. If you are worried get in touch with your pd nurse or neurologist.