My husband had a DAT Scan and we were told to wait for the results for 10 days . On day 11 we hadn’t heared anything , once during this process results had gone to the Drs and not us . Last week I took him for a flu jab and asked if by chance they knew anything ? The receptionist told me ‘yes the result was abnormal he has Parkinson’s Plus Syndrome ‘ I was obviously upset and had to go and compose myself . We got home and we talked about it . I then set about googling for an explanation . I now understand the term and that there is 4 main types . We cannot see anyone till December now which is crap !! The future is uncertain and I feel devestated . I guess that’s why he has Cerebella Atrophy . He has a EGG scan booked for next month also . I guess they are still looking for pieces of the puzzle to work out exactly what he has . I’m trying to stay positive I feel so sad for him , I know I’m strong and I will get through .
New Diagnosis: My husband had a DAT Scan and we... - Ataxia UK
New Diagnosis
What u write is very interesting because on my last neurologist visit,,, I was told that my CA had morphed into a Parkinson==like MSA which stands for Multiple Systems Atrophy----a kind super CA. My dr did this very off the cuff w/o a test or anything. I dont
know if I have this but Parkinson-like symptoms kicked in.Maybe it was psychological; maybe not. Suddenly I was quivering, shuffling and speaking at a very low volume. I reminded myself of my mother who had Parkinson's Disease for the last 6 years of her life. I see there's a lot of guesswork in this field.. Some CA sufferers have PD symptoms such as tremors. Good Luck whatever..
Sorry to read this, Neta. I think you have a very outward looking attitude, perhaps you suddenly gave yourself permission to relax, to give in a bit? I don't know, of course, but I hope you keep on keeping on, as you so clearly do with posts that are positive and outward looking.
Thank you for replying I think my husband may have MSA or PSP . We see a specialist in December
I see.Well that 9s good, You know MSA-P is not Parkinson"s..What does PSP stand for? xN
It is very difficult to deal with Ataxia and Parkinson's, sometimes, because symptoms intertwine, at least for me. I have not been diagnosed with Parkinson's Plus, however, so I'm sure that this will complicate matters further. I deal with symptoms, as they present themselves, and I talk to my neurologist, who adjusts and prescribes medicines that help. The catch here, though, is that there are some symptoms, like balance issues, and peripheral neuropathy issues that medicine just is not helping with. It would be good if you could talk to his neurologist about the diagnosis, exactly what it means, and what kind of help will he be able to get for his condition. Each person is affected differently with Cerebellar Ataxia, Ataxia, Parkinson's, and Parkinson's Plus ailments. Good luck to you both!
A receptionist told you this not a dr? If this is the case then this is wrong on ever single level there is! A receptionist isn’t allowed to get be results out & nor can they translate what the results are! If you’re in the uk You need to be on the phone first thing every single morning until You get an appointment with your gp. You also need to be ringing your husband neurologist or whoever he’s under that ordered the test & speak to the receptionist there about getting an appointment ASAP! As easy as it is to say but do NOT look up on google! You don’t know what you’re looking for & reading incorrect information for something he may not have will be the worst thing you could ever do! Wait until you speak to a professional. A receptionist is NOT a medicaly trained person nor are they dr!
I did ring the Neurologists secetery but was told we have an appointment with a Specialist in December, so the original one has no forward plan to see him . I rang the Dr’s to see if I could at least see a Neurology specialist nurse , at least someone who could explain and we could ask questions . I was told we would be referred to one after our December appointment ! I felt I had to find out what I could about Parkinson’s Plus Syndrome . I have experienced the condition PSP with work so I do understand some of what we maybe facing . I have a Drs appointment in 10 days . I will explain how we got the results from the receptionist . I will say though that although I don’t want her to get into trouble , I would like them all to be told that this should not happen to anyone else in the future . For now we just plod on I guess until Decembers appointment .
Hopefully your gp will be able to help & explain things better to you both as they will be able to interpret the letter sent by the scanning dept. I’m sorry but if the receptionist gets into trouble then that’s on his/her head. They know they are not gmto give results out so don’t let that be a concern to you, you have enough going on as it is. This information could be incorrect & has caused you so much worry & stress so unessesarily. Please try not to look any more on google & wait until your Drs appointment & please let me keep me updated.
I rang and spoke to a Dr on Friday I explained everything , including how we were told and she is going to see if we CAN get a Neurology Soecialist Nurse to speak to us .
I'm so sorry about you husbands diagnosis! So little is know about neurological diseases it can be very frustrating! I was told I had Sporadic (Idiopathic) Cerebellar Ataxia over 15 years ago, although I started having very minor symptoms about 8 years before diagnosis. I finally found out, through genetic exome testing in 2017, why I have ataxia. My ataxia is due to Niemann Pick C1 disease. NPC is extremely rare, especially adult on-set (I was in my 40's when I started experiencing symptoms). I'm 64 years old now. Anyway, I hope your husband can be helped, as there are some good medications for Parkinson's, I believe. Although it's extremely difficult, try to be patient for appointment and know you're not alone! My best to you..., ;o)
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