Appointment

[Rankin63]

I went to see my neurologist yesterday and came away feeling quite confused. He did not want to commit to me having MSA instead saying it could be 1 of 3 things.

They ARE MSA, PSP or Cerrabellar syndrome. I suppose I should be glad it's not MSA but who do I go to for support? My next visit is in 8 months so will maybe know more then and Dr did say he would arrange a further MRI then..

Last time he said it was probable MSA. Just shows how difficult it is to diagnose these illnesses but I don't suppose it matters as I still have the symptoms. Mina

[FredaE]

This uncertainty is awful and it will always be there. Some people find it helps to belong to more than one support group. `practical advice can often be helpful from several sources.

At least with our menagerie of similar "Beasts" a delayed diagnosis does not mean missing the chance of lifesaving treatment as it can with cancer.

keep on doing anything that helps

FredaE

[Diane831]

How frustrating for you to have thought that you knew what was going on, however difficult it is to accept, to not being sure at all. As you say though, you still have the symptoms!

Best wishes with your search for understanding and support, the trust nurses will still have some great advice and the PSP forum on here seems very active and Ataxia UK have a forum too and they are the people for cerebellar ataxia problems. Geoff was diagnosed with cerebellar ataxia for a few months before his MSA Diagnosis. I am sure that you will find support from all those and no-one will mind that your diagnosis isn't clear yet and will offer help with your various symptoms.

Diane

[Yanno]

Hello Mina. As Freda has said the uncertainty of not knowing is frustrating but as we have been told so often there is no certain diagnosis of MSA, just a probability. I have to say the symptoms as you describe them in your profile are very similar to how things started with Jax, who we believe has MSA-C.

I am sure you will have been in touch with the MSA Trust, if not I would highly recommend them. One of their nurses, Jill, I believe was a specialist nurse for PSP before joining the MSA Trust - I am sure she would be very happy to give some advice.

Diane mentions the other groups on HealthUnlocked. The PSP community is especially active and caring and I gained much information from them before the dedicated MSA community was started.

Rest assured we are all on a journey with different paths, twists & turns and there will hopefully be a listening ear here whatever your eventual diagnosis.

Take care, Ian

[Rankin63]

Thanks Yanno for your kind words. I'm quite accepting of my illness but just a little bit frustrated but as I said I'm going to carry on as normal,eating healthily and getting my exercise and try to forget about this silly illness as best I can. Hope your wife is as well as she can be.

[tingates]

Nina, hello. I am sorry for the uncertainty, it does feel as though it is an extra burden to bear. At the last consultation John was told that the most likely diagnosis is MSA-c, but strictly speaking he dies not have the required symptoms for a clinical diagnosis. He has been told In the past that it is not PSP, but this neurologist said in the following letter that he has supra nuclear palsy. Like you, we have no idea. The only way to deal with it is to realise that the overlap of symptoms of the various problems is huge, and as said elsewhere, a more firm diagnosis is not going to change anything. The PSP forum is definitely worth a look, and the PSP website. I think the MSA trust nurses are well used to this situation.

Amanda

[Hidden]

We were told by our neurologist's that a definitive diagnosis from a single appointment is near impossible. Instead they prefer to agree that you have a group of symptoms that fit a group of conditions called "Parkinson's plus". Then the see how the desease in the patiants case progresses over a period of time of no less than 4 years. At which time they then make a Best guess. This is because Doctors are protecting themselves from being sued for a wrongful diagnosis. We are still in the position that my wife has seen 5 neurologist's in total over 4 years and they have all seid "could be", "probably", "it might be" as there is still no diffinative test todate for a living patient. It is only when i who seid to the neurologist's that i am convinced it is MSA that my wife has, that they then agreed with me as the most likly future diagnosis. Without a dought seeing the "movement disorder specialist neurologist" was invaluable to point us in the MSA direction.