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Should I be concerned


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#1 Lovely

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Posted 15 March 2013 - 08:38 PM

Hello,

I am 33 year old African American woman. I have high blood pressure and iron-deficiency anemia. About a year ago I felt an internal vibration in my thigh above the knee and the ER said it was nothing and it did go away. Now, for the last 3 weeks I have been feeling internal vibrations all over. Never in the same place. At first in my feet, then legs, they would be there rather I was resting or in actions. It literally felt as though I was standing on a something that was vibrating. Now it is in my butt, arms, hands are shaking. Occasionally I will actually twitch. Finally, my torso rocks back and forth when I am at rest and seems to make its way down the arms to the hand and it is visible but slight. I have taken muscle relaxers to relieve the internal spasms or whatever. The doctor checked my anemia and I am at a 9.7 at first a 8.8. I would think as my iron improved I would feel better but the internal vibes seem to just be moving around. At night when I try to sleep it feels as though it is taking over my body all the way to my head. I feel tingling and I also feel like something is crawling on me at night and like something is rolling down my legs or arms.Also my arms feel like they are burning and I seem to feel slight parathesis in my face sometimes.

It is so bad that I can't sleep and I am driving my family crazy. I am crying all the time. Somehow I have totally convinced myself it must be PD but I have spoken to several reps and they say it does not sound like PD to them as well. In fact she says that PD is linked the build up of iron in the brain and I am having a hard time obtaining any iron in my blood at all. I have ex'd ALS or MS because I am not in any pain at all just agony over what triggered these feelings.

I have seen 2 doctors, 8 ER visits, and they all say it is anxiety. Also, my doctor put me on B 12 all blood work has come back normal other than my Anemia. I admit this is all over 3 weeks. I do have some stiffness in my right shoulder but the worst of the feelings are on the left side. My left side is a little weaker than my right. Also, I seem to have alot of saliva lately but I have had and ongoing cold. Lastly, when I eat or drink it gives me a sharp pain (not bad), and I continue to belch. Both of my doctors have basically refused to send me to the Neurologist. My PCP says that I am not out of balance, I have no speech problems, etc. They all agree and seem to be sure that this is Anxiety.

#2 Dr. Okun

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Posted 16 March 2013 - 01:04 PM

This does not sound like classical PD in symptoms or progression.

There may be an element of restless legs and restless arms and you may want to see a movement disorders neurologist for diagnosis and potential treatment.

There could also be a psychological component so counseling may be helpful in some cases.

I would start with an expert opinion.
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

#3 Daven

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Posted 17 March 2013 - 10:44 AM

Dr. Okun,

If you don't mind, I'd like to chime in here on this. My wife has a similar problem that this young woman is describing. She has been to numerous neurologists with no real diagnosis. She describes the problem as her body is humming. The difference is that hers is primarily at night. I've done a lot of research on this over the years. A lot women complain of this when they become premenopausal, although my wife's doctors have dismissed this as her problem.. They only thing that has helped her is to take Amrix, a once a day extended release muscle relaxer. We discovered this aid by accident after her a 2 level fusion in her neck. She was having some difficulties with stiffness and found that the Amrix helped more than the stiffness.

Hope this information is useful.

Dave

#4 Dr. Okun

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Posted 18 March 2013 - 10:09 AM

Thanks for the comment!
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

#5 Lovely

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Posted 18 March 2013 - 12:09 PM

Thanks so much I am willing to try it. My problem is much worse at night as well. Now I am no longer able to stand straight up for more than 2 minutes without muscle spasms so strong I tip forward and fall back.

#6 Dr. Okun

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Posted 19 March 2013 - 08:11 AM

Keep us posted, and I hope the docs and therapists can help you.
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

#7 Lovely

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Posted 23 March 2013 - 02:56 AM

Now I am really concerned. My hands and feet feel as though they have this back and forth vibration underneath the skin that is depositing in the big toe and making my feet shake. My hands now also have this. My thumbs and all fingers are twitching on both hands, but my right arm has a spasms that turns it to the right all the way and finally it releases. I am afraid of this so to speak oscillating up and down feeling in all limbs. I would think this is moving too quickly for any form of PD. Also, I am experiencing a spasm throughout my body that rocks me from right to left and back and forth almost knocking me over. Anyone please respond I am at a lost for words.

#8 Dr. Okun

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Posted 23 March 2013 - 04:44 AM

It is best not to jump to any conclusions on the diagnosis and treatment and to see an expert and get medical care. It is very likely that everything you describe is treatable and could possibly resolve.
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

#9 Lovely

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Posted 23 March 2013 - 06:57 AM

Thank you so much. I have an appointment scheduled for next week. I truly appreciate you taking time to discuss this with me.

God Bless!

#10 Dr. Okun

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Posted 23 March 2013 - 10:15 AM

Good luck.
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

#11 Lovely

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Posted 29 March 2013 - 10:50 AM

My symptoms are now going away. I am still having a mild shaking in both hands. Oddly enough more in my right than left. The twisting and turning is gone. My hemoglobin is up above 10 now. My ferritin levels are up not as high as they need to be but much better. I am still having slight internal spasms during the day. At night it picks up but no where near the misery I was experiencing. The doc says he thinks in 3 months that my iron and b12 will be fixed and everything will go back to normal. The spasms that were pushing and pulling are almost gone. I still feel spasms in my legs that cause a light buckle but they too are very light and going away as well. The doc says that it very well could be RLS AND RAS brought on by Anemia. I am still slightly concerned because of the hand shaking and the internal spasms in my feet and legs. However, I feel much better. The doc still has not referred me to the Neurologist because he feels that it is leaving on its on. He does not want to force a dx or put me on meds if I can control it with natural things. Hopefully I can report that it is over really soon. My legs do still shake after standing for an extended period of time but it too is way better. I was told that my long term Anemia destroys your reserves of good protein Andy muscles were not getting the proper oxygen. My insomnia is totally gone. I am still watching my fingers closely frantic of the pill rolling tremor. Oddly enough my fingers shake more when I hold them out. What are your thoughts? Also, I still do wake to twitches in different fingers or the back of my arms so forth. However, the doc insist no MS, and no PD. I have accepted the anxiety it is here to stay but I am working on controlling it. The doc is considering giving me something to help me to relax.

#12 Dr. Okun

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Posted 29 March 2013 - 08:06 PM

I think it is great news you are getting better. If you are not completely better in 3-6 months it may be worth a trip to the neurologist.
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

#13 Lovely

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Posted 03 April 2013 - 09:24 AM

Dr. Okun,
I have a question. I have noticed now that I feel something like a shake or tremors in my hands. In particular, my thumbs, pointer, middle, and pinky fingers. I notice my hands slightly shake when I try to stretch them out you can see them shaking a little. However, when I rest them it stops but it becomes internal after they sit for a few. My twitching is now pretty much solely in my feet and hands. It still is worse at night but I do feel it during the day. My big toe and second toe on the right now twitches and you can see it. The big toe is the only one that twitches on the left. My thumbs are the only physical twitching I see or feel to move. The back of my arms jump. I'm just checking to see if this sounds like anything major as once again my doctor does not think so. All of my other stuff is better. I feel much better, but these vibrations and twitches in my hands and feet are now my only concerns.

#14 Dr. Okun

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Posted 03 April 2013 - 11:51 AM

If you are slowly getting better I would just check in with your neurologist every few months. Glad to hear things are improving.
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

#15 Lovely

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Posted 04 April 2013 - 08:21 PM

I visited my doctor again to try to get some relief from the twitching and so forth. I talk to her about the shaking (regular doctor) not a neuro. She said that it could be Essential Tremor. I am not sure that I believe this because my symptoms have all been intertwined. She does believe that I suffer from RLS brought on by Anemia. She says it should leave as the Anemia continues to improve. I am terrified of ET. From my understanding this is rare for my age but I am shaking when I hold things it is slight. My family can't even see it but I do. I check the symptoms and it to is a progressive disease. I have never heard of someone developing this disease in 2 moths time. Also, I have talked to people that there Anemia has caused them to shake,

#16 Dr. Okun

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Posted 05 April 2013 - 09:30 PM

Keep asking your doc and consider a second opinion if you are not sure. Another disease that can cause anemia and shaking is called Wilson's disease. You also may want to check thyroid function.
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

#17 Lovely

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Posted 06 April 2013 - 04:03 AM

Dr. Okun,
I would simply like to thank you for the time you have taken with me. This experience has been a night mare and having some advice is so helpful. I am now experiencing serious vibrations in my hands and arms. My fingers on both sides are twitching uncontrollably. The twitches and vibes are fast and then slow. the rocking in my arm is so slight you cannot see it right off. I have been crying and suffering from extreme anxiety. My doctor put me on Propranolol which relaxes me but does nothing for these tremors. The tremors are at rest. My right thumb shakes when by my side. I am terrified that I have PD and it is progressing at an alarming rate. I am still feeling some vibes in my feet, legs just all over. It is better than before in my lower body and trunk but my hands are now showing scary tell tale signs. I also pointed out to her that my smile is a little off. one side of my face looks a little off to me. My family says they can't tell. My doctor took note of it but said it did not appear to the mask at all of PD. She did check my thyroid and told me that it was normal but high normal. it missed the too high by a few clicks. My doctor again reassured me that it is not PD, ALS, or MS for sure, although she is not sure what it is. I do not feel the vibes when my hands are moving but I feel them in my feet when I am standing on them sometimes. i am also experiencing sudden pain in my right hand and arm just above the wrist, and that arm is turning slightly on its on. I guess my thought is does this now sound like PD or more like Wilson's Disease. Trust me I would rather have nothing but if I have to chose I'll take the Wilson's. This is nerve wrecking. I am going to suggest to her that I may have late onset Wilson's Disease and beg her to send me to a MND Neuro. Oh, and my right side does seem to be a little stiff to me, and my insomnia is better but not gone.
Thanks for the advice

#18 Lovely

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Posted 07 April 2013 - 08:04 AM

After researching I believe I could have Wilson's Disease. I am told that I have Iron- deficiency anemia so that is the only difference but I am finally being referred to a hematologist for testing. Also, my symptoms are bad now. I am having terrible tremors all over and in my jaw. One side is smiling different. My jaw seems to be locking on the right side. My speech sounds ok but tongue feels wide like I am biting it. I am having internal and shaking as I do things with my hands. The dystonia ( I now know what it is) pushes my hands down when I hold them out in front. I feel slight twitches in all of my fingers here and there especially at rest. I have almost every neuro symptom of this disease. My mom admitted to me at one point that she thought she might have it because of her symptoms. Both of my parents have anemia. I am now able to get my doctors to listen thank God for you. I thought I was dying and no one was listening. All my doctors kept saying is you don't have PD. I know I should not jump to conclusions but I believe this is the only thing I have found that explains my symptoms as a whole. I hope this can fixed and I can go on with my life. My right side is a little sore and seems strained but I am now kind of at rest. I am now going to be sent to a Neuro. I want to know do you think (because) I still feel twitching in my pointer fingers and thumbs that I should have them to check me for PD as well or focus more on the Wilson's? I ask this question because I do not have insurance and my family is helping me pay for this out of pocket. My parents have already spent so much money on this over the last two months. I now owe 10,000 in medical bills and I know you can't put a price tag on your health but I would like to ease the burden on my parents as much as possible.

#19 Dr. Okun

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Posted 07 April 2013 - 06:33 PM

I think the cheapest way to get to an answer is not necessarily more tests and more guesses as to what you have, but seeing a Parkinson's disease and movement disorders specialist close to your home. You can call the 1800 helpline and they can give you some suggestions on this front. Hope you sort it out. It does not on the surface sound like Parkinson's disease.
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

#20 Lovely

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Posted 14 April 2013 - 04:06 PM

Dr. Okun,
I had my first initial assessment. The Doctor checked my balance, eye movement, reflexes, had me to walk on my heels, and then toes, etc. The Doctor said so far so good. I have a tremor that is running all over my body. It starts in lower extremities and runs up my spine through my hands to my head. In fact, my head and trunk rocks back and forth. Sometimes my hands turn on their own and I still having the body wave, where I am pushed forward and pulled backwards. However, my assessments went well thus far. I am headed for a MRI. The Doctor is going to check for MS. So far you were right it is not PD, but not sure what exactly is it. This is so nerve wrecking. Oh, and my legs still shake when I stand on them. My tremor appears to be fast. It can be felt but not really seen that well, especially in my legs.




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