Is it PD?: I was diagnosed with PD by... - Parkinson's Movement

Parkinson's Movement
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Is it PD?

MJKittyLover
MJKittyLover
29 Replies

I was diagnosed with PD by my Neurologist in November. She referred me to a movement specialist, who also gave me a clinical diagnosis of early stage PD, but suggested I could have a DaTscan for a more definitive diagnosis. The results came back normal. I was told that it may just be too early a stage to show up and may show up later and sometimes never shows up in the test. Has anyone had an experience like this? I have all the classic symptoms of PD including tremor, gait changes, stiffness, etc. I did think the condition was related to taking amlodipine for over 15 years and discontinued that medication in October. At this point I have improved slightly and hopefully if it is medication induced it will reverse, but I feel like I am in limbo and don't want to start PD medication. The doctor started me on Propranolol for the tremor, but it hasn't really helped much. My stiffness, however, is greatly improved. Frustrated.

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JohnPepper

Hi MJKittyLover. Does it matter whether you have Pd or not? What does matter is what you are doing for it. Medication can only possibly temporarily relieve symptoms, in the meanwhile, whatever you have got will continue to get worse.

If you do exercise, which can improve the symptoms, then you are at least doing something positive, while you are also getting fitter and healthier. Getting involved in an argument over what you do or don't have gets you nowhere. The only people who gain from prolonging that argument are the people dispensing the medications and the people doing the tests and scans.

Leave that all behind you and get on with looking after your body and mind. Start doing Fast Walking. What have you got to lose by doing so?

13 likes
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MJKittyLover

Definitely walking. Just got back from a mile walk.

3 likes
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JohnPepper

Hi MJ. I don't want to sound pedantic but you spoke about a mile walk. Did you walk the whole mile as fast as you could? If not then you are missing the point.

Walking fast makes your brain think you are in trouble. You have heard of the Fight or Flight response, well that makes the brain produce a natural protein called GDNF which means Glial Derived Neurotrophic Factor. Glial cells are the cells that get damaged by Pd. Neurotrophic means nerve repair. So you have a natural cure for those brain cells, which gives you more dopamine and lessens the effects of Pd. So, yo get better!

Read all the articles on my website - reverseparkinsons.net or contact me and I will send them all to you. It costs you nothing!

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Katgirl58

Dear JohnPepper I want to thank you for your site. I have sent an email to my Dr. who was recently diagnosed with Parkinson’s. And He is way too young late 40’s. Great guy and I have been researching a drug my son takes for high blood pressure when I accidentally found this site with your info here. So I thank you again. Glad your life turned around for you! All my best Kathy

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JohnPepper

Thanks Kathy. Ask your doctor to get hols of me via my website reverseparkinsons.net

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Juliegrace

If I was in your position I would wait and see, but start an exercise program (if you don't already have one) and maybe consider high dose thiamine (HDT) therapy- you can search it on HU - because it won't do you any harm and if you do have PD, early intervention with HDT has been helpful for some.

4 likes
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Osidge

I was diagnosed with tremor-dominant PD 10 years ago. When I had my DatScan it also came back normal. My neurologist at the National Hospital for Neurology and Neurosurgery in London told me I was not alone and that people in my situation with PD where further described as SWEDD (Scans Without Evidence of Dopamine Deficiency). I take Sastravi for my PD and clonazepam for REM-Sleep Behaviour Disorder - one of the non-motor symptoms of PD. My PD has not progressed since diagnosis.

3 likes
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iqbaliqbal
iqbaliqbal
in reply to Osidge

what are your symptoms

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Osidge

I have intermittent tremor in my right hand and have lost my right arm swing. I have a small amount of rigidity and depression. I also have REM-Sleep Behaviour Disorder.

1 like
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iqbaliqbal
iqbaliqbal
in reply to Osidge

have you increased the Sastravi dose over the period of time

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Osidge

No. It has remained at 50/12.5/200. I was originally on Stalevo but decided to change to the generic Sastravi to save the NHS money.

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iqbaliqbal
iqbaliqbal
in reply to Osidge

thanks, good to know that your symptoms are not worsening

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Osidge
Osidge
in reply to iqbaliqbal

My Neurologist thinks that my condition might never get any worse.

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iqbaliqbal
iqbaliqbal
in reply to Osidge

On what basis he says this? Datscan?

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Osidge
Osidge
in reply to iqbaliqbal

Given the lack of progression and the normal DaTscan, he thought that it was a distinct possibility. Interestingly, my Father had PD and died of a non-related problem after 28 years. He ended up with severe tremors. His sister, my aunt, died of PD related problems after 7 years. A mixed family bag!!

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FMundo

My neurologist advised that one definitive way of determining that you do have PD is if you take Carbidopa/Levadopa for a couple of days and your symptoms diminish that is proof positive that you do have Parkinsons. If they do not diminish you still "don't know" as some people with PD do not respond to Carbidopa/Levadopa. Its a fast way of getting the bad news, but does not offer complete assurance that you do not have PD. It does save time and the huge cost of getting a DATscan which is thousands of dollars.

I chose to not believe her. Took C/L, symptoms diminished 50% went ahead and got a DATscan and it definitively confirmed her diagnosis.

4 likes
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Erniediaz1018

Same here 😊

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Hokuto

Parkinson's is notoriously difficult to diagnose assuredly, in part because there is no one "set" of symptoms that everyone shares, although as an earlier respondent said, it's a pretty good bet that you have PD if you take carbidopa/levadopa for a while (I'd suggest a week or two at least) and your symptoms are ameliorated. I've read that in the end (so to speak!), the only positive diagnosis can be achieved at autopsy, when the pathologist is able to actually look at your brain stem and see whether the dopamine-producing substantia nigra area is healthily there or not. Until then, you're (we're) simply taking drugs to suppress specific symptoms. The use of brain scans (or so I've been told), is less to confirm PD than to rule out other potential diseases (I had an MRI as part of my PD workup and it showed nothing abnormal.)

A good animated introduction to the mechanism of PD in the brain can be seen here:

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park_bear

DAT Scan is frequently normal in early stage PD. Not worth the trouble.

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UMass67

Like you, I was diagnosed in November. I started C/L (2 25/100 a day) right away and the light symptoms I had (difficulties writing, typing, arm swing) disappeared within 36 hours. I’m 72, and my husband and I both felt why wait if symptoms can be alleviated now? I’m afraid of thinking about the future, but hopefully meds with control the symptoms. I added 250g magnesium to deal with cramping toes and it was miraculous-no cramps now. I walk 1.5 miles every morning. Gotta keep moving. Good luck! I’d be interested in hearing how things go for you.

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LAJ12345

Consider giving Hardy’s daily essential nutrients a go. It has made such a difference to my husband . If you read the ingredients as well as the vitamins and minerals there is a proprietary blend which has other things like green tea, grape extract, trace elements like lithium , alpha Lipoic acid ( they have told me there is 480mg per day of this) , NAC, ALC etc which are all supplements taken by people on this site. It is quite expensive but if you were taking all the ingredients separately it would be no cheaper, and this is made in Canada and has strict quality control , plus they have been doing clinical trials on it for 15 years so they have the balance of ingredients right whereas taking random supplements you don’t necessarily get the ratios of the various ingredients in the right proportions.

You may still want to add more thiamine on top of the Hardy’s if you need it. They say it is fine to add extra water soluble vitamins but no extra minerals or fat soluble vitamins like a, d, and e.

Maybe take at a reduced daily amount at least even if you don’t think you need so many extra vitamins. Then if you are deficient in anything or your digestion isn’t the best at least you won’t be getting more deficient.

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Grasss1973
Grasss1973
in reply to LAJ12345

Would you happen to know if Hardy’s can be obtained in the U.S.?

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LAJ12345
LAJ12345
in reply to Grasss1973

I imagine it can be as it is Canadian. I can get it in New Zealand. Try ringing their helpline in Canada and they should be able to tell you where to get it. Or you can get it shipped from Canada but in New Zealand once the overseas order is over a certain amount it has to go through customs procedures and gets taxed etc and the shipping is more than ordering it from a supplier here.

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Opt8

I understand your frustration! I was told by a very informed person to not take a dat scan b3cause the results can be not conclusive. My doc originally said he did not think I had pd,however, gave me a rx.for carbo/levo. I got immediate relief from my symptoms of stiffness, limited walking, difficult to stand and pain among few yet little tremmoring. He was happy at my follow up appt that meds work. So now says yes it is pd.That was nearly four years ago when I first started with cl. Very recently...

However for other reasons I've gradually and carefully weaned myself off of cl and have implementedr an exercise program along with taking mucuna and so far the above symptoms are not present. What I wonder about pd is what scientist think they are looking at may not be the clear picture. I have respect for our dedicated doctors and scientist and am happy to work with them. Unfortunately my appointment has been rescheduled a few times so I'm exploring a few different things.

1 like
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JMitch1950

Hello. That is the first I have heard of your situation especially after a DaTscan. Mine had a black hole described as 50% loss of dopamine. I had all the symptoms you described at the time. I truly believe Mucuna Pruiens has helped to slow my progression but also makes me feel good increases energy too. I did not like the powder after a year of gagging to drink in my cranberry juice so for the past 4 years I have been taking the pure form caplets. 100% organic. Research it, read all you can. My movement disorder specialist is aware completely that I take it between sinemet. My progression is slow. If you read all about Mucuna you will see that it is not just for PD. I wish you the best.

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Ahopeful
Ahopeful
in reply to JMitch1950

I am interested in the Macuna capsules. What brand do yo use and where do you buy them? How much do you take? Do you take HDT too?

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Lindylanka

I have no tremor but many of the other signs of PD , now classed as atypical parkinsonism. Am ldopa responsive and into 17th year. Two negative datscans. I shall be interested in other responses.

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