Hello all,

I am not diagnosed yet but would like help from a PD community with those that have been diagnosed to see if my symptoms are close or the same.

My path began with shoulder pain about 18 months ago. There was one spot of pain at my shoulder blade that just wouldn’t go away. It was a constant burning pain that I would describe as a 5/10 but would more/less be 24/7. I tried Bikram Yoga, massages, chiropractic, nothing. The pain led to chasing the source. While I chased the pain radiated to my neck and down through my right arm. Over the period of 18 months it felt as though a nerve in my right arm was dying. In addition to the pain I have lost some dexterity in my hand. I now have difficulty with chopsticks, dislike printing, drag keys on the keyboard. Basically it feels like my hand gets stuck when I ask it to do something. I can still function at work but would lose it if I were a surgeon or guitar player. One thing of note; a tendon (abductor pollicis) between my thumb and index finger is hyperextended (tight band that does not release whatsoever. No one can explain that one.) I have an occasional tremor as well in the right hand.

On the search for the source side I did the following: Back/Neck MRI, Head MRI, Nerve conduction study. All were clear. The neurologist summed up; pain, small lack of arm swing, rigidity, loss of dexterity, pain, (reduced) sense of smell, constipation and quickly brought up the possibility of PD. There is no official diagnosis. I have not been prescribed drugs. We are waiting it out for now.

For relief of pain, Tramadol works quite well. I have only taken it a few times but feel the pain release it’s grip to almost nothing. I never feel a sense of high, I just feel the drug hits the right spots and I feel in a much better mood because of it. All that I read would imply Tramadol is not suppose to work for PD. Anyone with experience with Tramadol?

I have also experimented with Mucuna Pruriens. I figured since my Doc will prescribe Sinemet or similar to see if I respond I may as well try this first. Well, it works for me. A teaspoon with warm water and in just a few minutes the pain melts away. It’s not long lasting, sometimes two hours, sometimes six.

Nothing releases the tendon in my thumb and it always feels that my right hand somewhat lost permanently its dexterity. I’m still trying to figure out if this could be some sort of peripheral nerve damage or in fact PD. Thoughts?

Here is a list of "no's": no balance loss, only the right side (hasn’t jumped), no gait issues, no facial issues, no sleep issues.

I think that internally I can deal with the diagnosis but I would like to limit the drugs as necessary both in quantity as well as time due to the effectiveness and dyskinesia that I read about. I’d like to know others that have taken only Munuca Pruriens to see if dyskinesia has been an issue? I find differing opinions on this.

i'm not going to try to diagnose you, that's the job for a doctor.
pd usually starts on 1 side
it responds to l-dopa
i had numerous frozen shoulders before i was diagnosed with pd,
i also had "no balance loss, only the right side, no gait issues, no facial issues, no sleep issues."
my symptoms were extremely mild when diagnosed, was shocked when i got the diagnosis. but my neuro, a MDS, didn't beat around the bush, he said i had pd.
i of course got a 2nd opinion, the MDS said she could tell i had pd at first sight.

trying sinemet for a brief time as a diagnosis certainly isn't going to cause any permanent damage nor dyskinesias . i have taken sinemet for over 7 years and have progressed slower than the avg pd'er and have experienced a dyskinesia once.

as far as taking mucana vs sinemet, i'll never understand why anyone wouldn't want to take a pharmaceutical - sinemet - produced under FDA regulation and is consistent from batch to batch and has guaranteed purity and is comprised of l-dopa, a naturally occurring amino acid and carbidopa, but would rather take mucana, the seed from a legume/weed with no guarantee of purity/active ingredient.

like always, i suggest you buy a used copy of THE PARKINSON'S DISEASE TREATMENT BOOK by AHLSKOG so you can better understand how the disease is diagnosed and treated.

and read this post
http://forum.parkinson.org/index.php...inemet-choice/

Ollie, I agree 100% with the advice ST gave you in the previous post. PD is a difficult diagnosis. If your current doctor isn't a MDS, find one and let them take you through the dx process. Even though I was confident in my initial dx, I still went for two more MDS for opinions.
Good luck

Hope you have insurance because once you are diagnosed, almost all insurance will be hard if not impossible to get.

As long as you are currently insured, you cannot be denied future coverage. You may need to buy it through the federal or state marketplace. But, the ACA (no matter what you think of the law) guarantees coverage even with pre-existing conditions.

healthcare is no longer a higher cost with obamacare, insurance companies can't consider preexisting conditions anymore. that's assuming you can find a plan that doesn't have huge deductibles and copays that is affordable.
but they can charge you a lot more if you are a smoker.

life and disability insurance will cost you a lot more if you can get it.

It might be good to get some LTD or added insurance coverage before you proceed further with any diagnosis.
Plan for the future and costs of care etc.. just in case..

This is probably a good idea for anyone that doesn't have a need for urgent diagnosis..


For the symptoms you listed, since everything came back clear so far, I wonder what kind of work you might do?
A lot of desk work , previous whiplash, repetitive, or above the head work, sports injuries, weight lifting?
Did the DC or massage person check for trigger points?

Any phys therapy /evaluation with an advanced PT?

If any of those sound like they might fit check here-
http://neurotalk.psychcentral.com/post388-1.html
more-
http://neurotalk.psychcentral.com/thread84.html

In the U.S.A.
In Canada, denial of insurance for pre-existing conditions is still a big money-maker. You can pay into LTD every year for 25 years; then your employer suddenly switches insurance companies,,,, and guess what? To the NEW insurer, you have a pre-existing condition. You get dumped.
Did you take medicine for this condition in the 12 previous months? Yeah, everybody knows I was diagnosed in 2004.
Well your insurance just got cancelled.
So they keep churning the contracts around: ditch a boatload of spastics at every sharp turn.
That's in Canada. It's a violation of federal law in the U.S. of A.
Pinkos.

As with any nerve related disorder, better to let a doctor diagnose. As has been stated a Parkinson's Neurologist will know immediately upon seeing you if your have Parkinson's Disease. I have shoulder and arm nerve pain that I associated with a sports incident in which I separated my shoulder. I attributed it to my shoulder. What I didn't recognize, was the same separation also caused a herniated C6 disc in my neck that was causing the pain and numbness in my fingers...

There's good advice from those above. Good Luck and keep us updated.

John

Thanks for the replies.

Insurance is good. Our LTD policy is good. I guess that I am mentally prepared for a diagnosis but in terms of my employment I have the potential to immediately lose full employment with a diagnosis. That scares me.

I also still have my doubts and stemming mainly from a positive effects from taking a Tramadol.

I'm not sure the direction to go. I didn't like my neurologist. I live in Alaska so the choices are limited.

I just found out a colleague had a diagnosis and he remains employed. Apparently if it's mild enough I'm still ok.

Soccer - Taking MP would allow me to hide it but admittedly this doesn't seem like a good plan. I need some closure as to what the hell this is.

Thanks all, sometimes I just need to see my thoughts in print to see how good or bad they are...