Husband is being discharged from.the National Neuro today (or tomorrow, or who knows..... depends on transport), after 3 weeks of investigations.
Anyway we've moved on from the diagnosis of MSA (diagnosised in 2022 by the local neuro team) to unclear about what is causing presenting symptoms . So maybe MSA, maybe not MSA. Further tests and analysis over the next few months to determine exactly what us going on. I feel very much in turmoil. It's all very unsettling.
On a plus note, it's good that he's finally getting a thorough investigation, bought on by the MSA Trust who wrote to my husbands GP telling him to refer my husband to the National Neurological as a patient. Hurrah for their proactive approach!
Love to you all.
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Great support from the MSA Trust. It must be very unsettling for you both, but your husband really is under the best care now at the National (albeit that it comes with the usual frustrations of being a patient at an overworked hospital).
I have been with them nearly 2.5 years and cannot praise highly enough how thorough they have been. If there is an answer they will find it! Good luck and the forum is right behind you!
They are the national experts for a reason and all seem passionate about their own specialty.
Works for those of us like myself, your husband and other MSA probable/possible sufferers as we are “interesting cases”. (Let’s face it there has to be some positive aspect to this hideous disease😏)!
The difficulty, as your story shows, is getting referred to the NNH in the first place. Not that surprising though given how few of us any one clinician will have seen in their career.
I understand your position and despair. You are not by yourself. My wife was told by the neurologist late last year that he was leaning towards MSA. We got a second opinion and the next neurologist said she did not have enough symptoms and did too well in her tests for a MSA diagnosis to be made. No need to come back unless we want to. There was no satisfactory explanation for the MSA symptoms she has. One of his reasons for non MSA was the lack of REM sleep behaviour disorder, although that condition does not affect every MSA person.
We just have to wait and watch and see what develops. It’s not easy, Good luck to you and husband.
We are in, not quite the same situation as you, but similar. My husband has a diagnosis of PAF, Pure Autonomic Failure, at the moment, and is under University College Hospital London which I have to say is excellent and we can not fault them. There is potential for PAF to turn into parkinsons or MSA. Both of which have been mentioned but he doesn't present with "all of the symptoms "
As there are only 180 people in the country with this condition one of the doctors told us last time that it would be better if he had parkinsons as the research , funding and awareness is there whereas with PAF it isn't because it is so rare.
It is good to hear there is a national neuro and the MSA are so proactive. We has never heard of such a place.We were too far along the journey with my mum and relied on flakey assumptions about what she could or could not have.
We joined the MSA Trust quite late using the Parkinsons network for support up to that point. They are well funded and organised. I think if all neuro consultants who mention a MSA diagnosis could give out the MSA leaflet it would be a step forward.
My mum passed away last October with in fact a pulmonary embolism (due to no movement) and pneumonia.
I am now in a place to think of how I can support the MSA Trust through fundraising. A well worth cause.
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