Change of diagnosis!

[Bizzyissy]

I have been in hospital for 10 day’s following a stroke scare. They have now decided that it’s no longer MSA but FND ) Functional neurological disorder. He feels even though I have. Some extra issues such as Hyperflexia & postural hypertension I haven’t detoriated fast enough’

After 2 years it’s good to have a confirmed diagnosis but on overload now. x

[ReverendBadger]

Interesting as for the first 4 years I only had left side hand problems and REM sleep disorder. Now in 7th year well advanced with around 22 MSA symptoms.

[Bizzyissy in reply to ReverendBadger]

Thank you, I still have symptoms that don’t match with FND so I will just monitor. X

[esj20 in reply to ReverendBadger]

that’s how my MSA symptoms started, exactly the same. REM disorder and left hand side problems!

[Monkeyfeet1]

that’s the news we all wish for. Congratulations 🎉

[Gill-C]

Sounds like positive news. Well done you! It must feel a bit difficult to trust the ever-changing diagnoses though and it sounds like you are sensibly proceeding with caution. Don’t sail off into the sunset from our Forum 😁

[Bizzyissy in reply to Gill-C]

Thank you, it’s been a bit overwhelming but I see my neurologist again end of the month to discuss the other symptoms. I will stay around a bit longer!

[Purplestar2]

Goodness, I hope you are holding up well? Do you mind me asking whether you had a positive DaT Scan and have still been rediagnosed?

[Bizzyissy in reply to Purplestar2]

Hi. Had dat scan 2 years and was clear but OH & hypeerflxia have been there since start as well as jerks & tremors. I’m obviously glad it may not be MSA but it sits in the background!

[5456partner]

Hi Bizzyissy, that must be a lot to get your head around. Hopefully if it is FND that isn't quite so bad, but still a lot to cope with I'm sure. Making me wonder if my husband's diagnosis is correct. But he does have lots of MSA symptoms and he had tilt test, and nuclear brain and heart scans which seemed to be pretty conclusive. It's not like they can do an x-ray and see a broken for sure is it? Anyone else wondering how accurate their diagnosis is?I do hope all goes well for you and there's improvement so you can go home soon. All the best.

[LadyLins]

to be honest I would ask for a second opinion. To say to someone basically you arent progressing quick enough for MSA is pants. MSA is different for everyone and I am a slow burner but still have MSA. I hope the new dagnosis is correct but I would ask for another opinion

[Bizzyissy in reply to LadyLins]

Hi I think it will be a while until I fully process. I still have postural Hypotension, and other non FND related issues. Unfortunately having had the stroke like symptoms I now am using crutches. Also neuropathy in hand & feet can be extremely painful! I am happy that it may not be but I’m not sure FND is going to be a nice journey either! As I was told it’s not life limiting but will bit life debilitating! X

[Derkie54 in reply to LadyLins]

Same here,

I reckon my wife has had MSA for thirty years but finally diagnosed in 2016.

Her deterioration has been a slow and gradual decline, she has lost all mobility now and needs help with every task.

[Bizzyissy]

Update! Saw neurologist today. FND wasn’t a change of diagnosis but just an add on to a different existing movement condition which cannot be given a label yet. More tests….. and time will tell apparently! So definitely not leaving this page yet!