thoughts?

[PaulaG3]

thoughts?

movementdisorders.onlinelib...

[ReverendBadger]

One of the first things my DYOR found in the month following my DX or MSA. I read it in detail.

Let's be honest in the absence of a biomarker any neurological condition which has a clinical diagnosis is a tick box excercise and "sub optimal accuracy" will be common. Attempts to improve matters are of course applauded but measuring the improvement requires a chunky number of progression to death and post mortem brain examination. For MSA its going to be 10 years before you know if a new diagnostic approach has improved a little or a lot or not at all on your previously sub optimal attempts.

For those so inclined you can do your own tick box excercise and then badger your consultant if it takes your fancy !

[PaulaG3 in reply to ReverendBadger]

thank you for your response x

[Ruffner in reply to PaulaG3]

I read it also. My husband's Movement Disorder Specialist didn't do extensive testing (no MRI, but she did order a DatScan). She did a quick check of OH in the office but mostly relied on my description of my husband's symptoms and a clinical exam. After the positive DatScan she confirmed her initial suspicion of MSA and we now follow-up with her Nurse Practitioner. I'm not convinced that it is the right diagnosis as his progression is slow. He also lost his sense of smell about twenty years ago which is common with PD but not with MSA. Since I have PD and use Levodopa, I did a Levodopa challenge and the medication didn't have any effect on his Parkinson's symptoms but they are mild so it was difficult to tell. We have been told more than once by his medical team that a "label" isn't very useful and time will sort this out. I would like to hear if others had more extensive testing and follow-up with their doctor before a diagnosis was reached.

[PaulaG3 in reply to Ruffner]

Thank you for sharing your experience x

I have seen an Ataxia specialist and he was lovely, unlike my more local neurologist. I think mine is also mistaken. He didn’t check blood pressure ( which is normal) and my bnb problems are mild and caused by a dural tear. He has ordered an MRI though which won’t lie.

Labels are not just labels when the implication s are as they are…

[ReverendBadger in reply to Ruffner]

Tests are a snapshot in time. repeat the test next year,month,week or tomorrow will it be the same ?

I've got a cornucopia of typical MSA symptoms some of which I can trace back to 2017, symptoms have been getting worse and new ones appearing recently so it would be logical to think my MSA is well progressed and I have had it for years and therefore plenty of bits of the brain destroyed. but MRI and CT brain are perfectly clear. I'm having a DAT Scan in 11 days time.

[PaulaG3]

all the best. Are DatScans available in the UK?

[ReverendBadger in reply to PaulaG3]

There is, so I am told, only one place for DAT Scan in UK, At Abergavenny radiological unit.

Early on in my MSA journey my consultant said a DAT would'nt be helpful. Now, having apparently run out of tests left to do, I have to have one.

If you research medical papers you soon see examples where a high percentage of MSA cases have negative (clear) DAT and/or MRI and/or CT. One I saw said initial scans 40% clear in post mortem confirmed MSA. conclusion is a negative scan doesn't tell you anything helpful; you still might or might not have MSA.

To a large extent I agree that we shouldn't focus too much on the label. If your disease has no cure and no disease modifying treatment and you are only left with symptom management the label becomes not so relevant. It is however normal for humans to prefer certainty over uncertainty so the new description of "Clinically Established MSA" might be better than the former "Probable MSA" purely from a psychlogical perspective. No practical difference for any sufferer though,still the same symptom management and disease progression.

[Polesden in reply to ReverendBadger]

i had a DAT scan in Carlisle infirmary and this is what tthe msa dx was based on. The doubt has arisen coz I'm doing better than he expected! He wants tto do tto do a different scan but can't aas I've heart failure and a pace maker. Now I've I've been referred to a Neuro psychologist for movement disorders

this might involve? I'm getting scared tbh.

sue

ps sorry abt typing blame the -BEAST

[ReverendBadger in reply to Polesden]

Hi Sue, that's interesting. can you say what the DAT scan revealed which led to the conclusion of MSA?

Is the other scan you can't have an MRI, because they cannot do MRI if you have embedded electronics like pacemakr ?

Ken

[Polesden in reply to ReverendBadger]

hi Ken

Docs andd getwhen I've recovered from my shower I'll lllook @ the docs nn get back to u

[Polesden in reply to ReverendBadger]

Hi Ken. Sorry not got back from to you but been in hospital for the last couple days .. Carer left me sitting on the shower stall under the lovely hot water a.d to the airing cupboard right nectt doors and when she came back seconds latter she found me unconscious on the floor. Ooooopss that wasn't part of the plan but thhen some women will go to any lengths to get a strapping 6ft blue eyed uniformed fireman carry her too bed. Aagggh happy memories!!! 😊

A OK now soo I'll find out the hospital letter's tomorrow..

Sue

[Jillian100]

Dear Reverend Badger, you said, “To a large extent I agree that we shouldn't focus too much on the label. If your disease has no cure and no disease modifying treatment and you are only left with symptom management the label becomes not so relevant.”

Yes!! I am with that train of thought. That’s where I am in my thinking, while trying to get some medical interventions to relieve symptoms for my husband. Thank you, for saying this.