... when in doubt, a good group of neurologists, as found at "centers of excellence" will book you for one of two tests involving radiochemistry in an attempt to visualize the dopamine transporter itself, that is the substantia nigra and pars compacta where dopamine itself is produced and stored for transport as a neurotransmitter. The first is called a Spect scan, which uses an iodine 123 radiolabelled compound that binds tightly to dopamine receptors. It makes a picture of dopamine activity in the brain around where the receptors are most dense, if the picture shows small areas of low "ligand binding", it is a surefire way of proving that your troubles are due to lack of dopamine transmission. THe next is a F-19 dopa PET scan, which is a different way of doing the same thing except a different "radioactive ligand" and a different machine is used to see a lack of dopaminergic transmission.

I did this and read it to my doctor, whether he wanted to hear it or not, and it seemed to help considerably. There's something about the written word that seems to make things more real. It also helps if you have trouble remembering things, like I do.

I made a time-line. I started about 15 years ago with the very first symptoms and worked my way forward to the present. I used resources such as the recollections of family members, medical records, and general life events. In the end, I had a clear word picture of the progression of the symptoms.

I think a retrospective helps with diagnosing PD because a lot of us seem to have had symptoms long before we ever thought about PD, and usually, we don't think of the symptoms in terms of a major disorder like PD. I thought the stiffness and rigidity was arthritis for maybe ten years. Then a doctor gave me sinemet for RLS and guess what, the "arthritis" (and other problems) disappeared. This gave me the clue to look backward, and when looking backward, I was able to put all of the pieces together. Then came the challenge of convincing my doctors--but you know about that part.

Another thing I did was take a picture of the computer keyboard that I had used for many years. Curiously, all of the letters had worn off the keys on the left side of the keyboard while the right side looked like new. I showed the picture to my doctor and just said that there is clearly something different about my left hand. I've been programming and managing computers for nearly 30 years and had never seen anything like this--and I've seen a lot of keyboards. This provided real physical evidence that something is wrong.

Perhaps you could take a picture of your unevenly-worn shoes.

Karl

Hi, I haven`t been posting for a while but having flitted through one or two new threads your plight really spoke to me.You must be so very anxious knowing that something is amiss but not understanding what and quite rightly you deserve an answer.Can you wait 6 months for a further examination ? I think not therefore you surely owe it to yourself to return to your medical practitioner and repeat your symptoms.If you are already suffering from depression the more anxious you become,the further down you will spiral so be blowed what the doctors think about you "looking for an illness" You are clearly searching for a name for the illness or condition that you have right now.
You don`t [unless I missed this] say how old you are but it is quite usual for doctors to overlook PD in a younger person.When I first presented my symptoms to a very well established and learned GP he first sent me to a rheumatoid arthritis specialist.It was this latter doctor who wrote back to my GP to suggest I see a neurologist I was just 38 years old.
When the reults came back my GP apologised saying PD was not even in his mind for one so young.
As the others have said,PD syymptoms can be caused by a number of illnesses ,one of whiich is a copper build up in the brain [treatable ]
but as a suggestion,if you are too worried to return to your own GP so soon,why not seek the advice of an holistic practitioner.
They might be able to throw some light on what it might be,but at the very least they may give you some reassurance meanwhile.
A chiropractor actually put my mind at rest before my diagnosis.I was convinced I had a tumour but she assured me that although my symptoms were neurological,they didn`t suggest a tumour.That advice settled my mind until my appointment came up.

Wishing you peace
Steff

Thank you Karl and Steff. I really appreciate your ideas. Steff, I am 33(almost 34), but my symptoms started around age 30, right after I had a major surgery. I was 29 when I had the surgery, but turned 30 by the time the symptoms started. About 6 months of a span from surgery to symptoms.

I realize I am quite young, however I seem to get everything early. I had a hysterectomy at age 29 which is quite young and depressing(no more children), I had depression as a young adult, and I seem to have many neurological symptoms at a young age now.

Illnesses don't know age and therefore attack at any time. I just hope I can get some answers to mine.

Thank you all again. And if you have anymore suggestions/ideas/comments, please feel free to PM me or post.

Thank you,

Missy

ALso, consider keeping a daily journal that you can take to the neurologist in six months. That is a good amount of time to have reviewed. This way you have a document and won't have to remember what you want to say to the doc. Just summarize the content.

Include:

• foot dragging
• what you could or could not do that day; e.g. sweeping the floor, shifting gear in the car
• sleeping habits
• hygene; e.g. bathing, dressing, brushing teeth
• eating; e.g. cutting food
• other; e.g. fever, dizziness, muscle ache, tingling, numbness
• etc. etc. you get the idea

Use Excel or Word on the computer, or just a paper journal.

PD is clinically diagnosed, i.e. the Neuro watches your progression over a period of time to see how you change and then bases a dx on this progression. I had the scans ol 'cs mentioned and these are used as the clincher to support dx, (although often they an be inconclusive as the results entail analysis of the nature of colors !!). Insurance companies may insist on these scans prior to payout of disability policies if you do not fit the PD profile, (i.e. too young, etc).

It is v. difficult for a PD specialist to make a dx when first meeting you and I would suggest it is probably impossible for anyone on this board to help you with a dx based on a written description, sorry.

What I can say is do not be afraid to mention PD to the Neuro, if they are negative ask why, get to a state where you are satisfied. If not, then transfer to a Movement Disorder Specialist, as Carolyn originally said.

PD is dx'ed by progression, if you have no baseline to dx against then you are never going to rule it in or out. If this Neuro will not establish a baseline and cannot convince you of the reasons then you have to go to a specialist.

Good luck,
Neil.

...the age is relevant I think.I know we can`t diagnose.It would be foolish to do so,but so many young onset pd folk have slipped through the net pure;ly because they are deemed "too young" to possibly have this illness.

I hope and pray with all my heart that it isn`t PD and that it is something that can be cured.But if it is....there are plenty of folk here ready to take you by the hand and guide you along the "interesting" journey that kis PD


X

Steffi's right. This forum has been wonderful for me. I looked at all kinds of articles and WebMD type information. None of that compares to communicating with others who know PD from a personal perspective. The rest of the world, and I'd say that includes a lot of doctors, just don't understand. PD is so strange!

Karl