Last year the movement disorder neurologist told me that I had Atypical Parkinson’s disease. I was diagnosed in 2019 with PD when the Dat. Scan showed lowered dopamine levels. I had mild symptoms including. Bradykinesia, rigidity, masking and dystonia. primarily in the left foot.I don’t have visible tremors.yet .
Didn’t respond well to C/L( lots of off time). . Symptoms have worsened.
Then last year I had the skin biopsy which showed the alpha synuclein is normal.
Anyone had a similar experience.?
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BeachcomberFL
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That's what I was wondering as well from what Bolt says. Atypical Parkinsons is not Parkinsons, it's normally symptoms 'like' Parkinsons and doesn't normally respond to Levodopa. That was my understanding. Wish you well with your next appt BeachcomberFL. 😘
This is a good news/bad news thing that alpha synuclein is normal. Glad you're getting evaluated again. Everyone deserves to know what they are dealing with. In your case it doesn't appear to be dementia. Best of luck to you.
I had the skin biopsy as well, 2 of the 3 skin punches came back positive for Idiopathic Parkinson's. I do respond successfully to Levodopa. It does not seem you therefore have Parkinson's. Good luck and many blessings!
I didn't know skin biopsies were available already? Was it an exception to get because you're not having 'typical PD'? Are they considered accurate? Wishing for good news in your next appt!
Update: I saw my local neurologist last week. He is not a movement disorder specialist, but he specializes in PD. He says that “the toolbox for Atypical Parkinson’s is rather shallow. There’s not much you can do with treating it.” He added that he would continue with the Rytary as I have some benefit . I should have another Botox injection in my left foot and leg which have severe dystonia.He does not administer my injection, a movement disorder specialist does that for me, every three months. This strategy has not been very effective as I continue to have a lot of rigidity and spasms in the leg and foot. I’m wanting to get back into the rollator , as I am now in a wheelchair.
A third strategy suggestion is keep up with my PT. I have two sessions each week with a fantastic therapist who has helped me with the dystonia and walking issues as well as strengthening and balance activities. She has me walking with the rollator-so I know I can do it.
I’m now concerned that skin test results put me in the atypical category and narrows my options for a better regimen. I think I can feel better than I do feeling better and moving better slow progression of PD.
Now I am seeking a neurologist who have some different options for an Atypical PD patient who does not have a more defined diagnosis .
I wonder if other PWAP can suggest treatments that work for them to feel better and slow down disease progression.
Good luck to you! September is on the way and you are wise to keep your goal in mind. A diagnosis is important.
Since you have something that helps, the PT, in a way, it's not relevant at the moment whether there are a large array of treatments. There's now over 30 PD meds, many for specific symptoms, not just missing dopa. The Inova Movement Disorder center in Virginia is based on optimism. They do frequent seminars (and have videos of the last ones on their website). If you get onto their list and listen live and ask a question, they may have lists of treatments for atypical to give an optimism boost.
This may not apply to you but I didn't know this:
"Unlike Parkinson disease, some types of secondary parkinsonism may stabilize or even improve if the underlying cause is treated. "
MY husband got the A1-syn biopsy test - about two weeks ago and we are still waiting for the results. We have seen one neurologist who said she "thought"he had PD, but to come back in a year for another UPDRS test." IOW come back after it progresses more. He has some symptoms like REM, posture, and loss of smell. We now have another apt with another neurologist (2 years later), so we will see what they say. I told our demonologist he might have early stages of PD and she immediately put him on a 6 month rotation because PD and Melanoma are linked. I asked for for the test, she did a little research, contacted the lab and did the biopsies.
We currently do not have a neurologist. His apt. is in September. Other than REM, which is better, he is doing really well thanks to HU! He is taking several supplements, especially before bed to address the REM. I will bring the result to that apt, but I don't think I will share until after the UPDRS test. The A-1 Syn test results will be handy, if I get another......"I think so - but bring him back in a year." I believe early detection will allow us an opportunity to help slow the progression. But I have little faith in the doctor having a large protocol on slowing the progression. We will see. If the test is positive it identifies the amount of folded protein, but doesn't actually identify which disease of three PD, Al, or MSA, but it is a start.
Thank you so much for your candid response. So helpful to see your perspective and how you deal with the information you have.
I’m using the time I have been waiting to learn about experiences of others what has worked with them. Every case is different.
However, I have found a few similarities. I respond to vibration when I am using the robotic gloves that were discussed in the Forum with some members experiencing positive results . My Dystonia is easing with spasms, becoming less, frequent and severe. Still early days of my use of gloves,and I am hoping to maintain progress.
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Does anyone else have "awake dreams"?
Does anyone have balance problems?
How many doctors do you guys have?
Pre diagnosis to post diagnosis. And I am curious if anyone else has had a similar ride? Carpal tunnel, anyone?
Do give homeopathy a go - you have a lot to gain and nothing to lose
