Morning, husband has been recently diagnosed and received a letter from his consultant about the diagnosis. On the letter the consultant had written that it could be Parkinson’s or Parkinson’s Plus. Is this usual? Is it a case that they wait to see how effective the medicine is before they can decide which variety he has? Any thoughts would be greatly appreciated, Rachel
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Have investigated it further. Realisation that not everyone diagnosed with Parkinsons could be Parkinsons plus. Guess we will have to see what happens. Unfortunately, DH does tick some of the boxes for MSA-P
Hi,
I’m in the same boat. It can be very difficult to differentiate between the two.
What are your husbands symptoms?
Hi, at the moment he has slowness on left side, foot dragging at times, low mood, general weakness when hugging, loss of smell, struggling with body temp - hands and feet regularly freezing. When he had his initial consultation (before the DATSCAN) the consultant said he had a positive babinski and strong clonus. He also has had a wee problem and has been on tablets for years. I wasn’t allowed into his most recent consultation (after the DATSCAN) but the consultant said that he has suffered quite a bit of loss in the brain area and said it was very clear that he has Parkinsons. At every point, it has been suggested that it could be Parkinsons or Parkinsons plus. He has another appointment in July so hoping that he can raise how we find out.
Thanks for your reply…
My main problem is slowness particularly when dressing and also minor motor skills such as doing buttons up.
I drool sometimes and have problems eating particularly cutting pieces of meat.
I find it really embarrassing.
Mood wise I’m ok but have noticed my voice has got quieter.
The dat scan showed low levels which to my neurologist seemed to be proof of my having MSA.
Been prescribed Sinnemet 12.5, 3 tablets a day which haven’t yet made any difference but it’s early days.
I’m a walking tour guide in Brighton
I’m happy to chat with your husband if he would like to?
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HI, well done for getting a DATSCAN! How long was it after the PD diagnosis or was the DATSCAN unrelated to the Parkinson diagnosis? We are still waiting since February, just started the PD drug trial, but with no improvement, sadly.
Best wishes, Mx
Hi,
Parkinson plus is much rarer / Let us hope that your husband has PD and not PD plus. My friend is also at this point of the diagnosis.
A patient will normally start a drug trial with a Parkinson drug.
If the symptoms improve - good! That also confirms the PD diagnosis. If the symptoms dont improve, this is a sign that is could be PD Plus or atpypical. There is less help for these people. My friend had no improvement after 4 days of the drug trial, so he is worried.
Best wishes, Mx
DH has been prescribed sinemet which he has refused to take so has now been given Rasagiline which he is also refusing to take. Says his symptoms aren’t too bad and is worried about side effects. Next consultant appointment in July so will be making sure I ask questions, even if I am just linked in to the appointment via a phone
Hi Rachel,
Sorry to re-awaken this thread, I hope that’s ok. I found it because I got that same result after my DATScan in August and I still don’t know whether it’s PD or P+. Did your husband ever find out? If so, how did he find out please? I hope you are both ok.
I’m anxious to find out more but the specialist I was referred to is retiring so rejected my referral after 6 months of waiting… I am 37 and wanted to start a family, I just want to find out as much as I can…
Thank you for starting the thread, I hope it’s ok to re-awaken it.
All my best wishes and smiles
Em
Hello Em … I am 70 years old. I was diagnosed with Atypical Parkinson’s following a positive datscan. In the letter it said that I had Atypical Parkinson’s in brackets [Parkinson’s Plus].
I have the opinion that they never know which of these you have. Could be either. Treatment is the same either way ie Parkinson’s medication.
Best wishes
Steve2
Hi, we are no closer to finding out. In some ways, it still doesn’t look typical for Parkinson’s but it could be that R has a slow progression. We have a physio appointment coming up soon so at least someone else will be able to see how he is doing. Still think that if a consultant writes Parkinson’s or Parkinson’s plus on the original diagnosis, it should be part of a longer discussion.