After waiting the 42 weeks to see a consultant, a letter few weeks later with a diagnosis of Parkinsonism (of unknown cause) with concerns of MSA, followed by an MRI, I’ve had no further contact from anybody at the hospital. When you ring you’re told to leave a message and someone will call back which they dop of course. Is this the same for others or is just a North Essex thing?
Hi, there is a really great MSA chat group on Health Unlocked, you may want to write this post on there. I don’t know about specific regions but someone on there might plus there are MSA nurses to offer support and help.
Has there been any follow up from your GP? They should have had a letter from the consultant and be referring you to a Parkinsons Nurse (if one is available locally) The local Parkinsons group may be a source of support and advice if you are able to get to one.
Hi Mosie
Nothing from GP at all. Looking at my patient notes on surgery website they have had a letter. Its not strange for this area for GP not to be referring to any nurse its not the done thing. What’s even more strange is that the hospital can not see any results of any blood tests, x-rays etc that my GP has had done or vice versa because they use different systems.
Hi RachRob
I have looked at the chat group you mention and did post on there. Maybe my mind wasn’t in the right place but the person who replied wanted to know, what seem to me a lot of info about my symptoms and other stuff about me.
Good afternoon West … In my early days of Parkinson’s I was looking for help & advice.
I did give as much information about me that I thought relevant & helpful to the group I was talking to.
Age, sex, single & live alone, the medication I take, the other health issues I have as well as my Parkinson’s symptoms etc …
These are anonymous bulletin boards, so I could be anybody. What harm does it do?
Information like telephone number, email address & bank details I think is no ones business bar mine so I keep that to myself.
I would hope that the inquisitive person on the other group chat was trying to be helpful.
Best wishes
Steve2
Hi Westcountrynordic, we do have Parkinson’s Nurses available via our helpline, please give the team a call and they can arrange for a callback: 0808 800 0303.
Best wishes
Freya
Parkinson’s UK Moderation Team
If you can afford it get a private consultation and report then you can move forward
I’m not so sure if i want to move forward. Part of me wants to not bother with treatment but another part of me wants to be less selfish in regards to my LO and stick around
If your GP has a letter and you haven’t had a copy they should be able to tell you what it says. It is probably the letter from your clinic appointment rather than a results letter. MRI scans done as outaptients usually takes a few weeks to be reported and then have to be seen by the doctor, a letter dictated and typed. It can take longer than you’d expect. I would try the consultants secretary again, it you just get the answer phone ask for the Neurology secretaries and explain to whoever answers the phone that you’ve been struggling to get through.
Unfortunatelty it’s not uncommon for GPs and hospital to have different computer systems but even if the GP could see the MRI result you need to the Neurologist to interpret it along with your symptoms.
I hope it gets sorted soon.