My wife's journey of confusion started on the 29th Jan 2023 when FINALLY she was diagnosed with Atypical Parkinsonism - Likely Progressive Supranuclear Palsy, this was the day our world ended at 51yrs old........ No age I'm led to believe. We had been waiting to see a Neurologist since 2021 when we were FOBBED off by another Neurologist who said she had Fybromyalgia .Now she'd been on these Co-careldopa 12.5/50mg for almost 3 weeks but hadn't been too good with them (dizzyness, Walking not improving and still having night traumas) to the end where she was fainting and feeling generally unwell. So we asked if she should stop them and they said Yes, but since then she'd been having Blackouts/faints during the day and at night. So we went to A&E (on Friday 10th March) and then tests done for ECG and bloods including urine (told all normal) , was referred back to the same Neurologist (at Salford Royal hospital in the Uk on 12th March) we saw on the 29th Jan 2023. He tested my wife with the same eye and movement tests and rediagnosed her with MSA, he also stopped her Enalapril (blood pressure tablets) as he felt they were having a detrimental effect on her. Now were in confusion because was it PSP or is it MSA??? APPARENTLY both are under the Umbrella of Parkinsonisms, all I do know is that I'm still not going to make retirement with the woman I've loved for over 30yrs and it's killing me........
Journey of Confusion: My wife's journey... - Multiple System A...
Journey of Confusion
Oh I am so sorry this is happening and appreciate the frustration at lack of clarity .PSP and MSA are two different conditions with similar symptoms.After google search PSP seems to cause shrinkage of the brain due to an excess of tau protein so expect MRI scans have been done to differentiate between the two.Think you would be best contacting MSA Trust this morning as they are excellent .Everyone on this site understands how devastating the diagnosis is to be given .
Hello Derek. I fully agree with Craft 7, you must be devastated. Some may say what difference does it make having a title MSA or PSP, they are different however and knowing would be important to me as well.
As Craft has said, get in touch with the MSA Trust and PSP has a similar trust. I’m sure between them you will get some further understanding.
The very best of luck. Take care, Ian
I’m really sorry. It’s devastating when you’ve had so many plans. I was diagnosed at 52 and neurologist s have been similarly disinterested. I am happy for you to contact me.
Like everyone on here, the journey can be bloody awful. Never stop asking and pushing the consultant's tec; I was fortunate enough to have two great consultants who spotted the bugger early on, some seven months from my initial movement problems. MSa is a complete nightmare but i sincerely hope you can access the help and support you need, happy to talk.
so sorry that you have to be here.
The grief that you are feeling for the loss of plans is awful, but expected given the circumstances. You will both feel the losses in different ways but if you can support each other’s situation then it is a start for the rollercoaster ahead.
I join the others in saying that we are here to support, there’s a Facebook group -MSA UK and Ireland - and the amazing MSA Trust and their nurses and fact sheets and support groups and welfare advice.
Take care
Diane
oh I so feel for you , tomorrow my hwp diagnosed in 2016 is going to an atypical clinic and I fear the worst always new it was something else, now seizures and blackouts, bowel trouble…, we been married 33years he is only 68 years young your wife is too young also, I think We are heading on the same journey already so many aides in the house I could and do cry. Stay strong and battle on. Life is a B…
saw lovely consultant yesterday thinks my husband has msa however taking him into hospital to do further tests to confirm. Great attention.
Could you let us know what further testing they do to determine if this is MSA? We are in a similar situation but other than a DatScan, which doesn't distinguish between the atypical Parkinson types, nothing more has been done for my husband. He has a clinical diagnosis of MSA-P but because of his severe blood pressure fluctuations his doctors will not prescribe Levodopa which might help to sort this out. Best wishes for you and your husband. I would like to know the outcome.
Saw consultant and 4 other neurologist staff were there while my husband was put through his paces. Consultant thinks unfortunately probably msa so more test to confirm. Levodopa levels to be checked cognitive tests heart monitor my husband to go into hospital for 2/3 days to complete this, I am so happy as his blood pressure is so low I am shadowing him to catch him. His blood pressure tablets increased to 10 mg midodrine I have seen a difference with this started at 2.5 increased to 5 and now 10mg takes a month to get into your system but maybe worth asking to try? Good luck I hope you find something soon that helps, it is so hard going.
please let us know how he gets on. X
heading to hospital on 5/4 for tests - will let you know 🙈
all the best x
Just our luck both got covid, hospital cancelled
😢
unfortunately my husband disgnosed with PSP Progressive Supranuclear Palsy - Life ‘s a …. X
husband in hospital last week, meds have never shown to work, blood pressure so low - wobbly most of the time. levadopa challenge, cognitive tests end result diagnosis Progressive Supranulear Palsy PSP! Not what we wanted
I'm sorry to hear this but knowing what you are dealing with sometimes helps a bit. I don't know a lot about PSP - are there any treatments to help with symptoms? We've had no luck with Midodrine or any other treatments for the blood pressure issue. My husband is no longer taking Midodrine as he had a hypertensive crisis in early April and was in the hospital and inpatient rehab for 16 days. He requires full care at home now. Best to you, Ruffner
so sorry to hear this. At least you know what you’re dealing with now xx
help please
A long journey
Lost my mom to MSA
Breathing/sleep issues 
