Here's Why I Believe That I Don't Have Parkinson's Disease

[tex]

Hi All,

As I've suggested in some of my other posts, I've decided that I probably don't have Parkinson's disease, after all. I believe that what I actually have is called Parkinsonism. That means that I have some of the symptoms of Parkinson's disease, but they are not caused by the depletion of dopamine neurons in my brain. Instead, they are caused by peripheral neuropathy, (due to gluten damage to my brain and nervous system).

There are no "official" lab tests to diagnose Parkinson's disease. A neurologist diagnoses Parkinson's disease, based on observable symptoms in the patient, such as gait, balance, stiffness, slowness, cognition, memory, etc. When the neuro doc diagnosed me with Parkinson's disease, he also diagnosed me with peripheral neuropathy, which I definitely do have, but peripheral neuropathy can cause all of the symptoms that he based his diagnosis of Parkinson's disease on, in my particular case.

I do not have some of the symptoms that I should have, if I actually had Parkinson's disease, such as stiffness, and slow reflexes, (everywhere). My lower leg reflexes are bad, (due to the peripheral neuropathy), but my upper body reflexes are normal, (which would not be possible if my lower leg symptoms were caused by dopamine neuron depletion). If the wind blows my hat off, I can almost always react fast enough to catch it, before it travels more than a few inches. Remember the old coin trick, where you place a coin on the top of your hand, and drop that hand downward, away from the coin, pull your hand back, and grab the coin before it travels more than a few inches? I can do that, easily. Both of those would be impossible to do, if I had Parkinson's disease. He never checked my upper body reflexes, so that's probably why he misdiagnosed me. I'm pretty sure that the basis of his mistake, is the fact that he does not believe that gluten can cause such extensive neurological damage.

I ran some of that past my GP this morning, and he agreed that I probably don't have Parkinson's Disease. He also agreed that the Metanyx, (megadoses of B-12, B-9, and B-6), is probably the reason for the improvement that I've noticed, in my Parkinsonism type symptoms.

I thought that I should clear that up, and I apologize for misleading everyone into feeling sorry for me, because of that misdiagnosis. It just goes to show, one more time, that doctors, (even specialists - or is it, especially specialists?), sometimes make mistakes, so we can't always take everything they say, at face value. Anyway, this is why I'm officially discarding his PD diagnosis.

Love,
Tex

[Gabes-Apg]

Tex
my belief is that like with MC - it is not necessarily the name or the dignosis it is the symptoms that are incurred and their impact on our lives, and as evident by this website, MC affects everyone differently.

Good for you that you are not carrying that cloud with you, and even better that the realisation as such is hopefully giving you the chance to better manage the symptoms that fall into the parkinsonism category.
-

It just goes to show, one more time, that doctors, (even specialists - or is it, especially specialists?), sometimes make mistakes, so we can't always take everything they say, at face value

THis goes in context with our other discussion about self management and constantly adapting to the symptoms our bodies project


all in all - big day for you, hope you get good rest and feel improved tomorrow

take care

[barbaranoela]

Galahad!!!!!


great news to hear= so if L and I happen by Texas and it be a Friday===then we can take U dancing!!!!

All kidding aside---I am so very happy to have seen your updated report!!! Take care of yourself--as I know that U do!!

Luve Columbo

[tex]

Gabes,

I agree with you, of course.

all in all - big day for you, hope you get good rest and feel improved tomorrow

I'm sure going to try. I think I'm gonna head for bed, and hope for a better day, tomorrow.

Thanks,
Tex

[tex]

Mrs. Columbo,

I appreciate the kind words, but I'm not so sure that I've been taking such good care of myself, lately. I seem to be spending a lot of time correcting mistakes.

I hope I can do a better job in the future, after I get the current mess straightened out.

Luve,
Galahad

[starfire]

I don't feel "misinformed". I feel happy with a smile on my face that you don't have Parkinson's!! I'm sure glad again that you are so great at research. If not you'd have probably gone the rest of you life thinking you had the disease.

Love, Shirley

[MaggieRedwings]

Morning Again Tex,

Leave it to the medical world. So happy to hear that the cloud is going away and totally agree with you on the gluten affecting the system.

If Barb and Lou come to TExas they sure better bring Frank and I with them and we are dragging you to the saloon for more than one dance. I PROMISE you!!!!

Love, Maggie

[JLH]

GREAT NEWS. I'm very happy to hear it. Hope your health improves day by day.

[hazel]

That is great news, Tex. I think I've mentioned that my mother-in-law had Parkinson's and she sure couldn't do those things you said. All her coordination seemed to go at the same time. I am very happy that you are doing well and don't have the progressive symptoms of PD to look forward to. It was/is encouraging about the meds helping, regardless of the symptoms' cause. :-)

[ant]

Wow Tex!

Megadoses of B-12, B-9, and B-6 sound much better than the damned drug. I hope the drug gets out of your system soon and your BP settles down to normal.

All best, Ant

[Rosie]

Tex, your analysis sounds spot on, and may be the only good thing to come out of this bad experience with resagiline. I've know 3 people with Parkinson's, and like you mention, the upper body problems manifested first and were the most noticable, especially trembling and shaky hands and fingers. The problems with gait, balance and stiffness seemed to come on later. It sounds likely that you will get back on track after the resagiline is out of your system.

The migrane on top of all the blood pressure spikes must be very fatiguing, so take good care of yourself and get lots of rest!

Rosie

[Gloria]

What terrific news, Tex! Once again, you have proven to be more astute than the doctors treating you. It sounds like you're correct in your diagnosis and can your worries aside.

We all knew that there wasn't any deterioration in your brain power.

Gloria

[tex]

Thanks everyone,

I sure hope that I'm right. I believe that Rosie is correct - Parkinson's disease symptoms typically show up initially in the arms, hands, and fingers, and the balance and mobility problems come later. Of course I do have some balance issues, but I really believe that they are connected with the gluten damage.

My BP is still in the upper stage 1/lower stage 2 hypertension range, but at least its lower today, and it's not as erratic, (at least, so far). I'm feeling better, and the headache is just about gone. I suspect that withdrawal from caffeine contributed to that migraine that I had yesterday. I'm optimistic that in a week or so, I'll be completely "out of the woods".

Love,
Tex

P. S. Maggie - Barbara is always teasing me about that, because she knows that I don't know how to dance. LOL.

[MaggieRedwings]

Well Tex,

Then between the two of us and our other 1/2s we will tech you. No excuses!

Love, Maggie

[tex]

Isn't there a saying that you can't teach an old dog new tricks? Besides, my lower leg and ankle reflexes are shot, according to the neuro doc, so I would probably be dangerous on a dance floor.

Love,
Tex