Back from neuro
 

As you may know, I haven't been feeling well for some time and have been on unpaid family leave since the first part of May when I had surgery (unrelated). Anyway, my PD sx have worsened - near falls, walking very slowly, etc.

The neuro is pretty positive that I don't have PD he said today. He only said parkinsonism because folks that he referred me to mentioned it as a possibility. He says that no one has come up with a dx, but he will keep looking.

His own personal thought is that all or most of my sx have been caused by something very stressful in my past. He says for most women it is being molested at a young age. He wanted to know if I had a a stressful situation at a young age. (no) He wanted to know if I had any in my life. I first though, hasn't everyone? Having my son die was the worst, but there was also the three years of hell after our daughter was born when we didn't know from one day to the next if she would live.

He didn't want any examples, so I didn't give him any.

So he wants some bld tests and that 's about it. I asked him about going back to work. He said that he didn't know what was the matter, but that I wasn't well enough to work.

I did sell my first patterns and kits for my pillow, so that was a positive thing.

Other than that, I'm kind of bummed.

Thanks for giving me the space to whine.

wanna trade disorders......????
 

this is great news!! You are curable, we are not most-likely. So you know what the deal is, get with getting better!! Therapy or whatever it takes.
all the best to you!

Charlie

mamafigure
 

If he is right, go to www.emofree.com, suspend disbelief, and give it a try. I have seen it do some pretty amazing stuff. Good luck.

Thanks for your honest replies.

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Not to be the pessimist here, Charlie, but emotional illness is often harder to cure than something like PD. and is has a commonality with PD - it's all in our head (pun intended). No matter what they end up giving you as a diagnosis, you have friends here!

However, Mamafigure, I sometimes think we(and doctors) use trauma and our past as a crutch (this is going to be hard to explain). And PLEASE know that I am not referring to you specifically, because I don't know that much about your situation. What I am about to say applies to everyone who has ever had anything go terribly wrong in his/her life.... (that would be about 99.9% of the population!) I would love for those reading to critique and comment on my theory on life. Some may be plagarized, but not much in thde written word is original.

Here goes with my attempt at an explanation. I think I will "peg" these as "Peg's Altruisms or How to Deal With Life."

1. You don't have to be rich to be rich.

2. You are your own worst enemy.

3. Take one day at a time. Only look back to see how far you have come.

4. If you dwell on the past - you live in the past. If you dwell in the future - you live in the future.

5. You only get one body, and it has its limits. You only get one mind, and its potential is infinite.

6. Believe in yourself, but believe you need a higher being or force to monitor and check. You can't do it alone.

7. Trust some, but not everyone. Be suspicious of some, but not everyone.

8. You definitely can't take it with you, but don't hoard it up for somebody else when you are gone. Enjoy what you have NOW!

9. Everybody is good at something. If you can't find it, let someone else show you (but it takes more than one person).

10. Finally, no matter what you think - SOMEBODY CARES AND LOVES YOU!

Peggy (Sincerely!)

Research, Research and more Research!!!!!
 

Dear Terri,

I also was told by a neurologist that he felt I had delayed stress syndrome. I was abused as a child. The only way to convince your doctor you do have PD, (neurologists have been known to make mistakes and have big egos that will not allow them to admit it) is to try the following:

1- Ask the neurologist to put you on a trial of sinemet. If you show immediate improvement in your symptoms, you have something to make him recant his diagnosis. Sinemet is the single most convincing drug that works for person's with Parkinson's or Dopa Responsive Dystonia. Go to a neurologist for a second opinion and ask him to allow you to try it.

2. For hard to diagnose patients, an F-Dopa Scan is used and if it shows dopamine is not taken up by the substantia niagra then it will put you in the position of making the doctor prove you don't have PD. Ask your health insurance if they will pay for it. Mine did.

3. Have a genetic test done by Athena Diagnostics, Inc. Ask your health insurance if they will pay for it. Mine did. Any lab can draw your blood and send it to Athena Labs. They are the only diagnostic lab that will perform this test with a doctor's order. I was informed by a neurologist at the Mayo Clinic that 50% of patients with YOPD have a mutation in their Parkin gene.

Don't get "bummed!" If you know in your heart that your symptoms are not in your head, but are physical symptoms, gather as much evidence to prove your illness is real. Get angry and educate yourself and your neurologist on how to manage your health. Your neurologist is not a "God" and is as capable as making a mistake as anyone. Neurologist go by experience and tend to slot patients into categories. Don't let yours get away with it. Make him/her see you as a person and stubbornly challenge him/her by proving you know your case better than anyone and make him see your individuality. If he doesn't like being proven wrong, he is a bad neurologist. Get another.

Love,
Vicky

Vicky,
Thanks for trying to understand.
Kathy

Hi mamafigure...

Yes! Vicky has it pegged...your doctor could be more proactive about this, I hope you suggest the tests to him. Good luck to you, and know you aren in my prayers. When I first starting seeking treatment and didn't know what was wrong, each doctor asked me if I was having emotional problems. One doctor-my primary care doc- was apologetic, as he knew me pretty well; the other was a neurologist, who spent 5 minutes with me, and told me it was age and asked-with a sly look on his face-if I was having problems at home or something. I was 33at the time. He was fired.

Peg, I love your altruisms...

Good luckto you!

1. You don't have to be rich to be rich.


That is exactly what I tell the bill collectors but I sooner would be rich than owe gas and heating contractors. Rich feelings about family and home etc won't cut it ask any man or single Mother.


2. You are your own worst enemy.


When i think back on 75 years of life I know that is not true


3. Take one day at a time. Only look back to see how far you have come.


From what and who and where maybe it is looking back to the past that keeps the future so far away


4. If you dwell on the past - you live in the past. If you dwell in the future - you live in the future.


I see this one as a joke as today this minute is all there is of reality


5. You only get one body, and it has its limits. You only get one mind, and its potential is infinite.


6. Believe in yourself, but believe you need a higher being or force to monitor and check. You can't do it alone.


Why not


7. Trust some, but not everyone. Be suspicious of some, but not everyone.


Trust has to be earned by time and conditions8.


You definitely can't take it with you, but don't hoard it up for somebody else when you are gone. Enjoy what you have NOW!

Give that which you can't take with away and enjoy the time it gives you9. Everybody is good at something. If you can't find it, let someone else show you (but it takes more than one person).


10. Finally, no matter what you think - SOMEBODY CARES AND LOVES YOU!


If you die with one true friend then you have the luxury most people never attain..................Love carries the burden of living up to it and is fleetilg as the wants of the lover fades. You came attached to your Mother and that cut of the umbilical cord and put you on your own for the rest of your life all else is only fate and that too is unreliable

Not cynical just not a good proponent of dreams

Keep your face to the sun and you will not see the shadows.