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Should I be concerned


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#21 Dr. Okun

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Posted 14 April 2013 - 06:15 PM

Good luck when sorting this out. There is one fast tremor in clinical medicine that happens when you stand still, but disappears when walking--orthostatic tremor. You may ask your doc about it.
Michael S. Okun, M.D.
Author of the Amazon Bestseller Parkinson's Treatment: 10 Secrets to a Happier Life
National Medical Director | NPF
UF Center for Movement Disorders & Neurorestoration
Read More about Dr. Okun at: http://movementdisor...hael-s-okun-md/
or Visit Parkinson's Disease treatment and research blogs at:
NPF's What's Hot in Parkinson's disease
or his parkinsonsecrets.com blog for treatment tips

#22 Lovely

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Posted 19 April 2013 - 10:27 AM

Dr. Okun,
Thank you for the advice I will mention it to my Neurologist at my next appointment. I have had some great relief as expected from my RLS. Howeve, I am trembling all over. My tremors are so slight but I feel them more than I see them.

My question is a resting tremor is visible when the body is not moving? I feel it but you can't see until I pick up something, etc

My next question is I notice when I hold something for too long that there will be a slight click in the wrist as though my hand is trying to turn. It does this if I am holding something in mid air. Also, my arms are still rocking but the tremors in my jaw and the parathesis in my face just disappeared. I noticed that my trunk and head rock sometimes and my fingers and toes (all of them) will fasciculate throughout the day. If I make a fist or flex my toes I will feel clicking, and sometimes they tap. Finally, that annoying body wave in which I sway forward and backwards is now much calmer (not gone) but better. I still notice at night my symptoms annoy me the most. my fingers no longer jump at my side but now they swell if they hang too long by my side. For example, when I go for my daily 2 mile walk my hands are swoolen badly when I am done for at least an hour. I often feel as though there is a vibration running through my whole body.

Is there a specific name for any of these symptoms? I am keeping track so I can be thorough when speaking to my Doctor.

These symptoms are so inconsistent and scary. I contacted the University of Michigan and they are going to a complete work up on me for Wilson's Disease as they feel it could still be a factor. Thanks for your advice on that. People should know that University of Michigan has an outstanding program for Wilson's with great success, and they help people from all over.

#23 Dr. Okun

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Posted 19 April 2013 - 10:52 AM

Great news that you are being treated at a great place.

It is important to keep in mind that tremor can be internal and not visible.

I don't have specific answers for the other questions,

Good luck with everything!
Michael S. Okun, M.D.
Author of the Amazon Bestseller Parkinson's Treatment: 10 Secrets to a Happier Life
National Medical Director | NPF
UF Center for Movement Disorders & Neurorestoration
Read More about Dr. Okun at: http://movementdisor...hael-s-okun-md/
or Visit Parkinson's Disease treatment and research blogs at:
NPF's What's Hot in Parkinson's disease
or his parkinsonsecrets.com blog for treatment tips

#24 Lovely

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Posted 29 April 2013 - 05:17 PM

My PCP has prescribed me Mirapex to try, yet she does not believe that it is Parkinson's disease at all. She believes I have a low functioning thyroid that has been missed. Every time my thyroid is tested it barely passes. I have an extremely low functioning thyroid. So far, all of my reflexes, and physical as well as mental test have come out normal. I guess I am just concerned about taking meds as an experiment. Is this normal as I have never dealt with anything like this and the side effects are scary.

#25 Dr. Okun

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Posted 30 April 2013 - 02:46 PM

It is probably best to be seen by a neurologist preferably with some knowledge of Parkinson's disease. You will be better off in the hands of someone experienced who can interpret the drug trial and maybe even document it with a scale such as the UPDRS.
Michael S. Okun, M.D.
Author of the Amazon Bestseller Parkinson's Treatment: 10 Secrets to a Happier Life
National Medical Director | NPF
UF Center for Movement Disorders & Neurorestoration
Read More about Dr. Okun at: http://movementdisor...hael-s-okun-md/
or Visit Parkinson's Disease treatment and research blogs at:
NPF's What's Hot in Parkinson's disease
or his parkinsonsecrets.com blog for treatment tips

#26 Lovely

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Posted 04 May 2013 - 03:23 AM

Dr. Okun,

First I would like to say thanks for the time you have taken with me, and secondly I did not realize the extensive study and work you have done with PD until recently. I would like to apologize for if I had of realized that Zi would have respected your expert opinion in my initial questioning. I realize you cannot dx over the Internet but I now know that you have worked with many with PD and you have good idea of what it sounds like and looks like.
Therefore, with that being said I was researching restless arm syndrome because of these vibrations, shaking, and twitching in my hands and fingers. it seems to back and forth across the hand at night. it also changed hands. some nights right hand other nights left. However, it is more left than right. Now my hands are doing what my legs and feet were doing. A couple of times as I am falling asleep I feel my thumbs and forefinger twitch together. (Which scares me to death). i am still twitching all over, fluttering here and there. I know that can be a sign of PD but my Dad told me that he' has all kinds of bad muscle twitches with no rhyme or reason. I also found out that he has a touch of RLS.
Could BFS cause these type symptoms?

There is not a lot of information on it in comparison to RLS. Can RAS affect the hands? Once again I am noticing at night when I try to sleep the hands vibrate, twitch, etc. I decided against the Mirapex until I see a neurologist. My PCP ordered extensively blood work be done (9 tubes of blood). So I am waiting on the results. I had set an appointment with a good Neurologist but my PCP requested I wait and let her try and find it in my blood work first because other than the RLS/RAS she doesn't believe it is neurological and definitely not PD. She did order copper testing along with the testing for the University of Michigan to see if it could be Wilson's but I went to an eye doctor and was examined and told there was no K-rings. However he is not an Opthamoligist. Is it important to see an Opthamologist or can an Optomist do the same?
Another question since I do have some pain in different areas could this possibly be something as simple as Fibromyalgia?

I am coming to terms that it is not PD after researching. I want to say NPF helpline is awesome and YOPD has really helped me to calm down and relax. I have had the pleasure in actually talking to a PWPD and he was so kind to explain the importance of the slow progression of the disease, (i am sure that you know that) especially in people my age. He took time to explain that PD is usually always unilateral, and usually starts in the hands or arms, not the feet on both sides as I have described. he also pointed out that while young people are dx it is rare for someone my age to be dx with PD. So with all that said I guess the nervousness is I hope it is something much worse. While PD is harsh there are other things that can be more cruel.

#27 Dr. Okun

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Posted 04 May 2013 - 04:46 PM

Thanks for the follow-up. I am not sure I can shed more light on any of your questions but I can tell you that restless legs syndrome does occur in the arms on some patients. Also, KF rings for Wilson's disease requires what is called a slit lamp exam. It could be helpful to get an imaging study called a DAT study to see if the dopamine transporter appears normal and this may reassure you this is likely not PD or parkinsonism.
Michael S. Okun, M.D.
Author of the Amazon Bestseller Parkinson's Treatment: 10 Secrets to a Happier Life
National Medical Director | NPF
UF Center for Movement Disorders & Neurorestoration
Read More about Dr. Okun at: http://movementdisor...hael-s-okun-md/
or Visit Parkinson's Disease treatment and research blogs at:
NPF's What's Hot in Parkinson's disease
or his parkinsonsecrets.com blog for treatment tips

#28 Lovely

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Posted 13 April 2014 - 04:33 PM

Dr. Okun,
I just wanted to update you. I finally saw a Neurologist and she is more than sure I don't have a movement disorder and I do not have PD or a Parkinsonism. She is sending me for a MRI just to make sure I don't have MS but she already told me most likely her diagnosis will be restless leg and arm syndrome with a toch of bfs and a slight enhanced physical tremor. She believes it will disolve on its own. I wanted to thank you for being so patient with me while I was panicking and going crazy and answering my questions truthfully and honestly. This was most likely brought on by my low iron, b12,and vitamin d. Therefore I have learned my lesson and I am taking better care of myself. Once again thank you so much.

#29 Dr. Okun

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Posted 14 April 2014 - 07:20 AM

I am so glad that you are ok, and that this Parkinson's disease forum helped you to sort things out.


Michael S. Okun, M.D.
Author of the Amazon Bestseller Parkinson's Treatment: 10 Secrets to a Happier Life
National Medical Director | NPF
UF Center for Movement Disorders & Neurorestoration
Read More about Dr. Okun at: http://movementdisor...hael-s-okun-md/
or Visit Parkinson's Disease treatment and research blogs at:
NPF's What's Hot in Parkinson's disease
or his parkinsonsecrets.com blog for treatment tips




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