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Extremely Concerned Over YOPD

by cmspgran, Sep 01, 2009 11:58AM
Hi

I originally posted this in the general neurology forum but got no response. I am extremely concerned I may be showing initial signs of parkinsons, seeing as MS has been pretty much reuled out an would like some advice or opinions based upon symptoms outlined below.

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. I have spent countless hours researching on the internet I don't know whether to consider Multiple Sclerosis, Lyme Disease, Parkinsons Disease or something else.

Being in the UK Lyme disease is not well followed or recognised and there isn't anywhere to specifically go to have this looked at.

If anyone has any opinions or suggestions as to what they would do next or any ideas of what could be causing this I would be exteremely grateful for any input.

Many thanks.
Member Comments (2)

by shakymama, Sep 02, 2009 11:12PM
To: cmspgran
You are understanding frustration. I was in my 30s who I was diagnosed with young onset Parkinson's disease. However, it was years before, I felt the symptoms of pain in my right shoulder my Dr. told me its a muscle spasm, I would feel much more exhausted than everyone else way I would assume that was a stressful job. My family would tell me pickup your feet, your dragging your foot. And they would tell me to speak up your speaking to softly to have to make a real effort. I noticed one day, the pain in my wrists when I used computer mouse. It felt awkward I immediately thought carpal tunnel. So we went to my doctor and told her what I thought, and he prescribed a splint to wear at night on the wrist. He did so in keeping my muscles when position brought out a violent tremor. That's when they finally diagnosed with young onset Parkinson's disease.

It is a very difficult disease to diagnosis we have to remember that doctors are not psychics. So you need to give them as much information as you can, I suggest you keep a journal to track of all your symptoms. What you doing at the time your sleep patterns. You eating habits and report them to your Dr. You need to help yourself as well. Try to reduce your stress keep exercising eat healthy and get plenty of rest. If you have YOPD or not these are good rules to live by. One thing I have learned is not all doctors are the same. There is one that will work with you. I wish you the best

by cmspgran, Sep 05, 2009 06:31PM
Thankyou so much for taking time out to write a reply to me it is much appreciated. I try hard to forget about the symptoms and not to tempt myself to read all the time on the net scaring myself further! Its a vicious circle as we all know!

I am trying to lead as healthy a lifestyle as possible and am going to go back in 6 months or possibly a year especially if the symptoms worsen an get another opinion. From your own personal experience do any of my symptoms sound familiar or plausible concerning yopd?

Thankyou so much again.
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