DR. TORRES-RUSSOTTO-QUESTIONNAIRE-FEEDBACK BY MARCH 31/09

[Lake of the Woods]

Hello everyone,
Further to previous posting I also asked Dr. Russotto if he would be interested in getting feedback on:

"questions we would like him to address on his questionnaire that he is working on"

He said he would, so in this regard, please respond to this post with your questions. Deadline for the questions is March 31/09 State your question in "the form of a question" when submitting please.

How lucky are we to have a doctor who is not only very interested in our disease, but is willing to listen to us and will eventually be "doing" something to help! Teamwork is getting things moving - Betty to put the idea in my head and Jeff who is always so helpful - lets keep working together!

Peggy Whitta

[Lake of the Woods]

1.(a) What is your blood pressure sitting down?
(b) If you were to immediately stand up what would your blood pressure be?

(The reason I am asking about this is because when the nurse takes my blood pressure sitting it is fine but she takes it again when I immediately stand and both numbers are significantly higher and she said that is quite unusual - I am assuming it is because of my OT. This happens everytime I have my blood pressure checked.)
Peggy

[jolarson]

1. Stem Cell research has been proven that it would help those with Parkinson disease...could it also help Primary Orthostatic Tremor?

[ALC]

1. Does increased adrenaline caused by factors such as fear, stress, hunger or exercise significantly increase your OT symptoms or have little effect?

2. If you take medication and it proved effective for a limited period of time, how long did it take to lose it's effectiveness or require an increased dosage?

3. You you have other, related tremors? If so, what type of tremors?

[jolarson]

ALC - I would like to ditto your first question. Also add just elementary basic questions like, What causes POT? Is it hereditary? Is Dr. Torres-Russotto the only doctor doing research on POT and/or does he know of others?

[Betty]

Regarding question by ALC:

1. Does increased adrenaline caused by factors such as fear, stress, hunger or exercise significantly increase your OT symptoms or have little effect?

My question is: Have the adrenal glands been considered as a cause or factor regarding OT? I have always felt there is a connection.

2. Has your walking gait changed considerably? Do you stumble or trip easily? Do you find either or both feet "drag" when walking?

3. Does anyone have severe vertigo as well as OT?

4. Do many experience severe back pain while/after standing or leaning?

5. Have many experienced tightening of calf and hamstring muscles and unable to do stretching exercises due to back pain?

6. How many now experience essential tremors of the hands; to the degree handwriting is very difficult?

Peggy, this is for your question regarding B/P; when mine is taken sitting it is usually normal, but when I stand, it drops considerably. I am not sure OT and the B/P change are connected. This would be a good one for Dr. Russotto.

Betty

[Lorie M]

Do people with OT also have neuropathy of the feet such as burning, tingling, or numbness of the soles of the feet?
Do you realize Mayo clinic is also doing some research with OT?