Tavapadon

[Rafiki2]

My wife was diagnosed with PD in 2019 by separate neurologists. However, she does not have 4 of the symptoms associated with PD. She does not have 1. Tremors 2. Still has a good sense of smell 3. Has a good sense of balance and 4. Her handwriting has not changed. She does though respond to the Sinemet medication. Could she be suffering from a different condition?

[Astra7]

in the beginning we all hope it’s a misdiagnosis, but it’s most likely not. Responding to meds is fairly indicative. Sorry

[wifeofparky]

Tremor is not always a symptom of PD. The list of PD symptoms is very long. There is a graphic of an iceberg showing the different symptoms of PD. I wish I could find my copy and scan it to this site.

[Jmellano in reply to wifeofparky]

is this helpful?

Pd seen and unseen symptoms

[Rafiki2 in reply to Jmellano]

Yes, thank you. It's clear that there is much more than meets the eye.

However, there is no getting away from the fact that several other conditions that mimic PD may have some of these same symptoms. Not to mention that the side effects of PD medication can also cause similar symptoms. Accurate diagnosis remains tricky.

As for a DATscan, here is a link that explains the limitations of this scan:

apdaparkinson.org/article/w...

Here's hoping that science keeps on improving.

[Jmellano in reply to Rafiki2]

i just read an article about long covid 19 symptoms and the article could have been talking about PD. As for Datscan, my results convinced me that i had pd. a normal datscan has two distinct comma-like or crescent shapes. An abnormal DaTscan(mine) will have two period-like or oval shapes, or a combination of period and comma shapes, indicating a reduced uptake of DaTscan in certain areas of the brain. Parts of the image that are “lit up,” indicate more surviving brain cells. Dark areas could mean either PD or parkinsonism.

My DaTscan image showed that the right side of my brain is less “lit up” than the left side. The right hemisphere of the brain coordinates the left side of the body. The left side of my body is the one most affected by PD, so it makes sense that my right side brain is less “lit up.”

my datscan

[Juliegrace]

What are her symptoms? I had none of the symptoms you mentioned initially, but definitely have PD.

[Rafiki2 in reply to Juliegrace]

Her symptoms were walking slowly and without much swing in her arms. We then saw the first neurologist who examined my wife and said she showed signs of 'Parkinsonism'. We have since seen 3 different neurologist who all seem to be reluctant to confirm PD and instead say she has Parkinsonism.

As there are a number of conditions that mimic PD, we are still not sure of what my wife has. Perhaps it is indeed PD. After almost 2 years of taking the usual PD medication, she has now started taking B1 HDT, and after 10 days at 500mg per day, we have upped the dose to 600mg. which she takes at breakfast time.

She was suffering from pain in her right leg, mainly at night, for over 2 months and this has now ceased for the past 4 nights since taking the B1. No other improvements have been noticed so far but we think that we are being too cautious with the dose and tomorrow she will up the dose to a further 400mg which will be taken at lunch time.

We will post results in due course.

[wifeofparky in reply to Rafiki2]

Parkinsonism doesn't respond to C/L. Has she seen a Movement Disorder Specialist?

[Rafiki2 in reply to wifeofparky]

Yes, she saw a occupational therapist who tested her for her movements, balance etc. but not being a neurologist, could not determine what condition she has. This was done purely for an insurance claim report.

If you are correct in saying that Parkinsonism does not respond to C/L, then a couple of the neurologists who examined her should know and not keep referring to Parkinsonism. She definately responds to C/L, experiencing regular 'on' and 'off' episodes.

We are looking forward to seeing what HDT B1 will do now that she has started increasing the dose and shall be posting regular reports.

[wifeofparky in reply to Rafiki2]

A Movement Disorder Specialist is a Neurologist who specializes in Parkinsons

[Rafiki2 in reply to wifeofparky]

Sorry, didn't know that. I don't think we have them in our area. Maybe in Cape Town but that is 500km away from where we live. Thanks for your input.

[rebtar in reply to wifeofparky]

from what I undetmrstand, Parkinsonisn isn’t a diagnosis, but rather a description of symptoms before a definitive diagnosis can be made.

[jimcaster in reply to Rafiki2]

I wouldn't place too much emphasis on the word parkinsonism. Parkinson's Disease is a subset of the broader term Parkisonism. "Parkinsonism" also includes more serious conditions like a Multiple System Atrophy (MSA) and Progressive Supranuclear Palsy (PSP). Parkinson's Disease is generally not as bad as MSA or PSP.

See this link from the Davis Phinney Foundation, particularly this sentence:

People are often diagnosed with Parkinson’s when they actually have another form of parkinsonism. On the other hand, people can be diagnosed with the general umbrella term parkinsonism when they specifically have Parkinson’s.

davisphinneyfoundation.org/...

[Rafiki2 in reply to jimcaster]

Thanks jimcaster, the link you sent is very informative and helpful.

[Smittybear7 in reply to jimcaster]

My neurologist says parkinsonism, movement specialist says pd. I'm confused. On 1 c/l (25-100mg) every 8 hrs. About 2 hrs after taking c/l my tremors seem to get worse some lip quivering and sometimes big toe lifts. The big toe lifting more often occurs when sitting. I was also taking 5mg baclofen twice a day for cramping. i have cut 1 5mg pill of baclofen .I take 1 5mg baclofen at night My symptoms might last for about 2 hr. then subside. They vary in frequency and intensity. sometimes my gait slows down a little. I'm trying to b on as few meds as possible. I'm terrified of side effects. On a bad day I will take c/l at 7 hrs. instead of 8 then stretch my evening dose to 9hrs. Sometimes right before my next dose I might notice them again. My days fluctuate. Some days I have few issues and other days somewhat problematic. Mostly when Iam stressed. I have osteoporosis and stenosis. I take the following supplements: Ultrazyme,multivitiams and minerals, NAC, dha, spm, omega 3 vit.d3,c, adrenal drops, cortisol drops(Homeopathic),super cal plus,b1(500),magnesium complex ,Co Q10. I may start super b complex which is supposed to balance all the b vitamins. Hesitant to start b complex because it has 350 b1 in it. Just started 500 b1 at the beginning of last week. any suggestions? I have read the b1 book but it doesn't address how to regulate the bcomplex ,magnesium ratio. I don't see my nutritionist/pharmacist until November. He is not familiar with the b1 protocol, but gave me the b complex which has the following ingredients:

375mg b1,

375 riboflavin

100mg niacin,

b6 37.13 mg,

folate200mg

.b12 150mg

.biotin375mg

pantothenic acid375mg

choline15 mg

,dimethaylglicine62.5

,inositol37.5mg

paba 25mg.

Don't know if adding the extra375 of b1 will mess up determining the right dose of b1.

Any and all advice is appreciated. Thanks

[kaypeeoh]

I don't have pain or stiffness or slow movement or taste/smell problems but I had a positive DATscan.

[BigTexan in reply to kaypeeoh]

When you say "positive" do you mean abnormal ?

[kaypeeoh in reply to BigTexan]

I think positive and abnormal ate the same thing in this case.

[Hidden]

A lot of us on here can relate to this Rafiki. My own symptoms are mild at the moment & it doesn’t “feel” bad enough to match my preconceptions of what PD (or in my case Parkinsonism) is. I don’t have ALL the classic symptoms either, but dopamine agonists work for me & a DAT scan agrees with my neurologist.

I’ve found it psychologically helpful to accept the diagnosis. It’s one less thing to worry about. I’ve accepted that the prognosis is unknowable & that no 2 people have the same experience. I’ve accepted that there are many many grey areas which I assume is why the term “Parkinsonism” is used. Having done that I’m shutting it out & getting on with life.

Sending my very best wishes to you & your wife.

[ddmagee1]

Response to carb/levodopa is diagnostic! If she has stiffness, slowness, rigidity, without tremors, or balance problems, the neurologist could determine, perhaps, possible Parkinson’s Disease and/or Parkinson’s! Of course, only a trained specialist/physician, by looking at history, symptoms, and examination, could officially determine any type of diagnosis! I’m only sharing my experience, as to how I was diagnosed. Sometimes, early symptoms are very subtle, and it can be difficult, for professional medical practitioners, to diagnose neurological disorders.