[cmspgran]

Hello to everyone was recommended this site from a nice lady at the PDS forums, first post here no doubt you receive many posts from the 'worried well' but genuinely feel that something is wrong and would really really appreciate some experts living with Parkinson's to have a quick scan of my post and offer any thoughts, opinions on what to do or where to go next?

I am extremely concerned I may be showing initial signs of parkinsons, seeing as MS has been pretty much ruled out I cannot see what other conditions could cause such symptoms.

Thanks so much

I was a previously healthy young man, I am now 26 and work in quite a stressful job as a teacher but still play sport and go the gym most nights.

I started experiencing symptoms 2 years ago (September 2007) can almost remember to the day. My first symptom was a feeling of weakness running from the right kneecap through the calf and into the foot (basically the leg from the knee downward). It feels as if my leg no longer wants to support my weight properly and I have lost balance on it, some days are worse than others but it is always there and is a very uncomfortable problem and one which cannot be forgotten about. Walking is uncomfortable now because of it and sport even worse. I also expereince parathesia at times in the leg mainly in the foot with feelings of tingling under the skin.

In February of ths year I began experiencing a feeling of weakness in the right arm from the elbow down mainly eminating in the wrist and hand. Again very uncomfortable and constantly there since emerging it feels as though I have to try twice as hard to do everything now with the right hand (which is my dominant hand). I also feel shaky at times almost like a tremor from the inside and the right hand tremors at certain postural positions such as when my wrist is raised up for using a computer mouse.

I went to my GP and he referred me to a Rheumatologist.

In May I was referred to a Rheumatologist I explained my symptoms and fears of possible MS he undertook a detailed neurological exam which was normal apart from minor reduced right knee jerk and inverted supinators of the hands he then ordered further testing including:

Nerve Conduction Tests - Reported as Normal

EMG - Reported as Normal

MRI of the spine - Normal other than "L5/S1 intervertebral disc is degenerate showing loss of hydration, there is also a posteocentral annular bulge here with a tiny posterocentral annular tear. This causes very minor narrowing of the AP diameter of the spinal canal but is not felt to be significant and none of the transiting nerver roots are compressed.

The rheumatologsit concluded nothing was wrong and sent me away. Unhappy I returned to my GP and was sent for an MRI of the brain and full blood work.

Blood work was normal other than slightly raised liver values.

MRI of Brain - Normal other than craniosynotosis of the skull with asymmetry of the left and right skull vault otherwise normal no evidence of mass lesion or demyelination, normal craniocervical junction.

Undeterred I pushed for a referral to a neurologist who is a movement disorder specialist and went privately, upon examination and reading throguh my results the neurologist concluded nothing was wrong after completing his own neurological examination. He ordered more bloodtests including full blood count, sedimentation rate, vitamin b12, copper, ceruoplasmin and thyroid all came back normal.

He also took a look at the MRI of the brain himself and could see no abnormalities.

Still not happy I went for a second opinion to another neurologist, all this brought was that the first neurologist I saw was a "class neurologist" and I have had all the necessary tests. He did state that its plausible I may have had an initial MS attack too small to detect through tests and would have to see what happens and that was no point in worrying - which I found very disappointing. He did his own brief neurological exam and concluded nothing was abnormal.

The symptoms are not going away and are there everyday and are affecting quality of life quite badly especially being an active person.

Many thanks for any help!

[lindylanka]

Welcome to neurotalk and the pd forum, hope this will be of some help...

It can often take a long time for PD to be diagnosed and some endure the wait, often going through several different types of specialist, and end up after some years with the PD label after everything else has been eliminated.

This is much more likely to happen with someone as young as you, as PD is associated with aging - it is not uncommon for people in their 50's to be regarded as too young! So whoever sees you is going to take a long view of it and wait and see. The scan associated with diagnosing PD is a PET scan, an MRI scan is used to eliminate other conditions. Despite what you may read there is no cast iron diagnostic method yet, and a sinemet challenge is often what is used to gauge response. This is something you could discuss with your neuro, though it is not something that you should necessarily be thinking of taking right now on a regular basis, again because of your age.

You say that you are an active person, stay that way even though you are feeling an impact on your life, keep moving, keep using the affected side, and do not give up on being active, there is a lot to show that in neurological conditions, and especially in PD, exercise is especially useful in maintaining health.

Your symptoms could still resolve into something else, so it is wide open -
but you are of course very welcome here, there are lots of helpful people and a lot of useful information too.

Lindy

[AnnT2]

Parkinson's is different for each person. The fact that this has been going on for some time, that you have a shakiness in your hand when you use the computer, and that you have some issues with your spinal column all suggest to me that you do not have Parkinson's. The tremor for Parkinson's is slow and not as rapid as shakiness. The spinal column issue can be causing the leg weakness. You strike me as being very concerned with your health, and perhaps you are noticing every little thing taking place. It is probably depressing you and making you soemwhat obsessive. So far, you have no diagnosis because you don't seem to have the classic symptoms. I would take the attitude that yes, I may have PD but there is an even greater chance I do not. You don't want to be 90 years old some day and looking back on the twenties when you lived under a cloud when you should have been enjoying life. I could be wrong, I am not doctor, but I do not think you have PD. However, try to go to the best Movement Disorder specialist you can find. I don't know where you live, but if you state your location, someone who is reading your post can probably tell you of an excellent doctor.

Ann

[jcitron]

I'll echo Lindy's welcome to the PD forums on Neurotalk. She said it all regarding the PD. Wait and see what beholds you and stay active. This is very important both mentally and physically.

From my initial impression of you, and I am not a doctor, I sense this could be the result of stress. Believe me stress plays an important role in our well being. When I was working full time, I actually started suffering from cognitive problems along with increased PD symptoms, sleep disorders, and other issues. In the last year, I was out of the office more than I was in!

So having said this, you might want to slow down a bit and enjoy the environment around you. You might have to give up on something to allow your body to slow down some. I don't mean giving up an active lifestyle, but perhaps easing back a little bit to see what happens. I'm saying this from personal experience. I was laid off from my job in July and have since gone back to college full-time. Guess what? I'm actually sleeping again and I am more relaxed. I visited my neuro-psychologist a few weeks ago, and she noticed a big difference in my cognitive levels. She even told me it was stress that was "making me stupid" and causing an exacerbation of my symptoms.

During the search for my PD, I went through the same tests you did. Nothing remarkable was found either, which is a good thing. Heck, your brains aren't rotting away. Think of this as a positive thing instead of a negative thing.

Good luck, and I hope everything works out well for you. Only time will tell you what this really is.

John

[cmspgran]

I would like to thank you both very much for taking the time out to read through my post and give me your opinions and suggestions it is very much appreciated and always comforting to know there are people out there willing to listen and offer advice. This is something I feel Doctors dont always do well.

With regards to Anns comments I do agree I may be becoming somehwat obsessive with it all and have chatted to family and close friends about my concerns, I think its the constant nagging symptoms that always make you want to probe further, do reading, research the net and as we all know it can have deadly consequences!

I am going to push on until I get answers but again want to thankyou both and promose to keep updated. I would like to stick around in the meantime and swap thoughts and gain more knowledge from this great forum.

[Ibken]

Originally Posted by cmspgran

I would like to thank you both very much for taking the time out to read through my post and give me your opinions and suggestions it is very much appreciated and always comforting to know there are people out there willing to listen and offer advice. This is something I feel Doctors dont always do well.

With regards to Anns comments I do agree I may be becoming somehwat obsessive with it all and have chatted to family and close friends about my concerns, I think its the constant nagging symptoms that always make you want to probe further, do reading, research the net and as we all know it can have deadly consequences!

I am going to push on until I get answers but again want to thankyou both and promose to keep updated. I would like to stick around in the meantime and swap thoughts and gain more knowledge from this great forum.

Your symptoms are almost identical to my early signs. I was dx w/ pd 10 yrs ago...tho the 1st doc said i was too young - at 57!
All I can say is we've got the same thing by any name. Have to go now...feel free to ask questions. Later...Ibby

[lurkingforacure]

When my husband was dx'd a few years ago, I began noticing every little thing about my body because, well, I was just in that frame of mind. It got so bad I even went to a doctor and asked them to check me for ALS, something I had no symptoms of at all, but which scares the heck out of me because we have two young kids and the life expectancy is so short. At any rate, she told me I had no indication that ANYthing was wrong with me, but wanted to give me a script for Zoloft, I think it was, for my anxiety, which I declined.

In the years since, I have come to realize, and accept, that I AM getting older and that my body IS going to start falling apart, but that doesn't mean I am going to die and leave our kids without their mom in a year, or two, or three. I am way older than you, but now know that every little twitch, burp, shudder, drop, fall, slip, you name it, is just part of life and does NOT mean I have anything (and even if I do, hey, ignorance is bliss and I am still here today being the best mom and wife I can be).

The other huge epiphany I had was this: even if I had/have something, so what? There is next to nothing the medical community can do for me anyway, except prescribe me a bunch of pills, and with the voluminous research I already do for PD, no thanks. It is the very rare pill indeed that actually helps significantly for any length of time without nasty side effects. This is why I personally wonder why they trumpet as "breakthroughs" new tools or procedures which allow earlier diagnosing of PD, Alzheimer's, ALS, MS, and any other condition they have no cure for and for which we currently know no way to prevent, much less slow progression. But this is just me.

I guess my advice to you is this: until you have a third party (doctor, friend, co-worker, whoever) comment to you that something is or looks wrong, I would accept that my body doesn't always do what I want and let it go, and live life to the fullest. Even if you had something, and it sounds to me as if all you have is an overactive worry gene like I do (and believe me, docs are only too quick to rx an anti-anxiety drug so be careful), there is not much one can do except eat right, exercise, and have a positive attitude. You can let your worries worry you until you do develop something, or you can set them aside and live life as if every day is the true gift that it is.

[cmspgran]

I wish I could take that attitude more at times as its definitely the one to take lurking! I think its a catch 22 for me I have these symptoms and they are annoying so I then start researching about them in the vague hope of finding a cure! I then read into conditions that match and then worry and become depressed even more!

Ibken you say your symptoms where the same, can you say in what way? How old where you when you first noticed them and how long did it take for it to progress/be diagnosed?

[lurkingforacure]

Originally Posted by cmspgran

I wish I could take that attitude more at times as its definitely the one to take lurking! I think its a catch 22 for me I have these symptoms and they are annoying so I then start researching about them in the vague hope of finding a cure! I then read into conditions that match and then worry and become depressed even more!

Ibken you say your symptoms where the same, can you say in what way? How old where you when you first noticed them and how long did it take for it to progress/be diagnosed?

I bet if you typed in any number of symptoms you would find SOMEone SOMEwhere whose condition X or Y or Z started that way. Every human is so different. It's easy to say, I know, and so hard to do....but if you will remember there's nothing to stop PD progression even for those that actually have it, it may help you focus your energy on making yourself as healthy as possible instead of worrying yourself into a coma!

[Ibken]

Originally Posted by cmspgran

I wish I could take that attitude more at times as its definitely the one to take lurking! I think its a catch 22 for me I have these symptoms and they are annoying so I then start researching about them in the vague hope of finding a cure! I then read into conditions that match and then worry and become depressed even more!

Ibken you say your symptoms where the same, can you say in what way? How old where you when you first noticed them and how long did it take for it to progress/be diagnosed?

1st symp that got my attention was sort of stubbing my left toes, walking 'ungrounded" - a general weakness on L side, drawing up of left arm like i needed to carry a paint bucket to make my arm hang right. That was Summer '99 Intermittent tremor in L index finger showed up Dec '99 upon which I suspected PD - having known a few pwp's. I was 56.

Neuro exam about a year later dx pd

I was healthy, active - continued to work for 2 years (pottery), no drugs.
Therapy w/ Janice Walton Hadlock (google her) did not help.
Finally started a small bit of Sinemet in Fall 04....when it was do or die. The saga continues.
Advise putting off L-dopa as long as possible. Keep as active and as strong as you can, reducing stress as able. Investigate 'alternative' therapies. Many are helpful and you may just find the secret to the puzzle! I know it's there! Where are you?