I was diagnosed with PD 2018. I have doubts that I have PD. I think it may be Vascular Parkinsonism. I do not have a tremor, sleep well and can walk 2.6 on my treadmill. My symptoms are rigidity, constipation and anxiety. My neurologist has me on Rytary 61.25 mg/245 mg 3 times a day and Nourianz 20 mg. Most days I take 1 Rytary and the Nourianz and feel the same as if I took Rytary 3 times a day.
My neurologist says I am in denial. I am not. I know I have a neurological medical issue. I want the right diagnosis. I don’t want to take meds I don’t need and that are very costly. I had two daTscans with positive Parkinsons but that could be any Parkinson illness. My neurologist will confident it is Parkinson and will not refer me to a movement disorder doctor.
Has anyone been misdiagnosed? If so, how did you handle it.
Thank you for your replies.
Written by
Darcy3
To view profiles and participate in discussions please or .
A readily noticeable (i think this part is important- if you have to sit wondering whether its working or not, theres a good chance it isnt) positive response to levodopa and positive datscans are strongly suggestive of what we know as parkinsons disease.
On the other hand, confusing edge cases do occur, and you dont mention either resting tremor or bradykinesia, which are two of the three cardinal symptoms of PD. Bradykinesia creeps up on you, but if neither it or resting tremor are present after four years then that raises at least one of my eyebrows.
An MRI might be in order. Im not a doctor, though.
Indeed, there arepatients who typically have only resting tremor for at least 5 years without development of other parkinsonian signs or symptoms. Recent research of these patients demonstrated a markedly decreased striatal uptake of fluoro-dopa to the range of PD. These findings suggested the existence of a separate subtype, namely, tremulous PD with a manifestation of resting tremor alone.
My husband has Parkinson’s with no tremor and at first we also didn’t think the diagnosis was correct. He’s never responded much to levodopa…and didn’t like the way it made him feel. He said it didn’t help him at all, but I could see he was moving better with it.
In the first couple of years, he went on his own initiative to two different movement disorder specialists for second opinions. This did not require referrals. He also did some research and saw a doctor to rule out Wilson’s disease. They all agreed it was Parkinson’s, and most said you better hope it’s Parkinson’s because the alternatives are worse.
Hope that helps, but you should be able to get a second opinion for anything whether your neurologist agrees or not.
I was the opposite. I was told 'to go home and put that foot firmly on the floor'when i was experience dystonia and tremor. It was at thebegginning fo the pandemia and he didnt know how to get rid of me, i believe. I went to an online neurologist that dx correctly and got me on madopar which was insuficient but did something. Later my dose was adjusted and felt better. Further a dat Scan confirmed. I would seek a second opinion. Search reviews of your neurologist online.
Does this mean your neurologist isn’t a movement disorder neurologist. That’s who you need to make the right diagnosis.
My husband was misdiagnosed initially. His main symptom was extreme apathy, He was first diagnosed with depression. Fortunately our wonderful GP (here in Australia) put him on the right tract and he ended up at the Movement Disorder Clinic at one of our major hospitals, where he was then diagnosed with Lewy body dementia.
The clinic worked well because the neurologists discussed the various cases. When levadopa didn’t work, they tried the Neupro patch. The result was amazing and he was rediagnosed with Parkinson’s. It is such a complicated disease and symptoms vary so much. My husband doesn’t have a tremor, so that complicated things.
Hi. Definitely worth asking for a second opinion as it could be a Parkinsonism as these are different and respond differently…my husband has Progressive Gait Freezing which is not really parkinsons but he is diagnosed as parkinsons……
Like others, I would recommend pushing to see a Movement Disorder Specialist. Also if you started with Rytary but never tried the immediate release short-acting carbidopa-levodopa (brand name Sinemet but most use the generic version) then switching to this might help to confirm whether the symptoms will improve on carbidopa-levodopa or not. I would think that It's easier to do trial doses with the short-acting version of the med rather than the extended-release Rytary (plus it's a much cheaper version of carbidopa-levodopa). If Rytary is not helping you, I don't see why a neurologist would insist that you remain on it and accuse you of denial. Remember it is your body and your life - physicians are supposed to partner with you, not dictate what they want you to do! If you have the option, find a new neurologist, preferably one who is a Movement Disorder Specialist.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Is it possible to have PD and no symptoms?
Possible Major Breakthrough in Parkinson's
Initial feedback on the brand new (to USA) drug: ISTRADEFYLLINE (Nourianz)
Rytary switching, tips from your success?
How Much Carbidopa Levodopa After 5-10 Years? Any other meds?
