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Can't get diagnosed after 3 neurologists - One being in top 5 of USA
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Scared45mother posted:
I've seen 3 neurologists-1 is top 5 of US & have been told multiple answers - anxiety, essential tremor, somatoform etc. I feel both my wrists w/slight tremor when they're under my pillow when going to sleep or when arms are folded.Top Neuro/MDS/University Hospital said this isn't disease, don't have parkinson's/MS, specific positions like under my pillow can be essential tremor-not resting tremor-says most everything should go away-states symptoms are from herniated discs, C5/C6, C6/C7, bulging, stenosis-time should heal. Am I being told this so we can wait to actual Parkinson's symptoms present themselves? I'm scared that I have this disease, M.S.A. or other scary Parkinsonism. Please ease my fears.History:11/5 Mother passes.She had Parkinson's. 11/7 Felt weakness in rt wrist. Have cold.11/8Laying on side & felt brain jerk inside head-later woken up w/nausea11/9 Wrist starts shaking.11/12 Rt ring finger is blue under ring.Woke w/arm slightly numb. start taking lorazepam Dr. gave over phone. Every time I took it, feel cold sensation above center rt side of forehead.12/15 stop lorazepam. 12/23-Cold returned.12/26 Woken by intense brain explosion in frontal lobe w/electrical static current (sinus) area-can feel buzzing moving to lt foot to big toe & lt hand. Nausea feeling & sweaty. Have numb feeling in front lobe/forehead about 1/2 inch above brows-cold, prickling, tingling feeling. Sinus related?(Will this ever go away?)Extends down lt side of nose to cheek - Fell last summer over curb & landing on cheek, blacked out for couple of seconds. Only symptom from fall was involuntary swallowing that happened twice. 12/28 Woken by hard hand & feet shakes. Heart's pounding, sweating/clammy hands & feet.12/29Everytime I got close to sleep, cold prickly feeling in forehead would start to move faster & wake me up.12/30 woken by hard hand shakes, feet shakes & jaw clanking twice.1/4-Sinus infection anti-biotic though sinuses clear, just enlarged. Dr. gives Ambien & Zoloft-took 3 days & stopped. Felt forehead get tight & rt eye moving side to side.1/21-hiked & ran down steep street (Slight Bladder leakage) & woke to my rt arm shaking.1/23-had normal MRI except discs issues-didn't offer PT/meds to help w/bulging, compressed discs-suggested beta blocker. Next 3 wks, wake-up w/night shirt soaked & sheets. Took Advil-3 weeks, 2 a night would make body do that?Thyroid checked-hyper level is over & but went down-Not premeno. Lt foot-"ring finger" starts moving lt to rt. 2nd toe is twitching. Buzzing top rt foot & below at ball of foot.Muscle twitching all body.Rt big toe has buzzing sensation & feels like trembling. Lip has buzzing sensation-Vibrating in lt shoulder.Did I have a seizure? Is that sensation in forehead means or sinus infection?What is the root of all my symptoms? Why frontal lobe area w/cold prickly sensation?Is it sinus?Symptoms that I didn't have before I took Lorezapam, but now have since stopping it:Cold, numb forehead sensation n-between eyebrows w/an occasional cold sensation going vertically down forehead- same sensation I'd get when I'd take Lorezapamt.Rt arm vibrating sensation shoulder, neck & hand-Oily Skin, lt side of foot, right side of rt hand, rt index finger & bottom area buzz.Rt ear tube vibrates. Back neck vibrating.Index fingers shake as well as wedding fingers on both hands. Twitching-both 3rd & 4th toe feet. Buzzing sensation-big & 2nd toe in lt foot.Lt pinkie toe pulling away from other toes in foot. Numb sensation in lt foot big toe.Cold prickly feeling in lt eye inner corner-infrequent. Slight bladder leaking, Dry cough. Cold and hot sensations on face. I don't have any gait issues. Sleep has been off. Slight jaw tremor. It feels like I get new symptoms every couple of weeks. I am scared that I won't be a part of my 8 year old twins lives as they get older. Everything seems to be happening so quick.
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Scared45mother responded:
Dear Dr. Stacey,

I hope you can help me and respond to my question at your earliest convenience. I would greatly appreciate it!
 
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Mark A Stacy, MD responded:
Dear Scared45Mother,
We are all so sorry you are going through such a difficult time. I really do not think you have PD, and all the doctors you have seen do not think so either. I would try to accept that, and try to slow down a bit. I have not lost a parent, but my friends and family all indicate that it is like getting the breath knocked out of you. It will take time.

Kind regards,
 
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Scared45mother replied to Mark A Stacy, MD's response:
Thank you for your response. I understand that this could not be Parkinson's, but with the atypical resting tremor could this be any of the other Parkinson's Plus Syndromes? I fell down last summer and blacked out for a couple of seconds and the first symptom that appeared that July was involuntary swallowing - all of a sudden I would feel my throat swallow as i was just sitting on a couch. This has started up again about 4-5 months ago.

Could you answer a couple of questions for me?

1- I feel a tremor in my right wrist when I am laying down or arms folded that started a couple of days after my mother passed in November.It has gotten stronger over the past couple of months. The left one started end of April. Is this a resting tremor, postural or essential tremor? If this is the atypical resting tremor doesn't this go under Parkinson's Plus Syndromes?
2-I have numbness in my forehead between the eyebrows and right upper eyelid is drooping. I felt intense pressure when I woke up that December night with what felt like an explosion in my head. I haven't been able to sleep regularly since. Is this numbness going to go away after having it for seven months? What is this from? Is this part of what could be Multiple System Atrophy or any of the other Parkinson's Plus Syndrome?
3- Symptoms that have come on rapidly:
My wedding ring finger in both feet twitch and have weakness, now. They involuntarily move on there own.
My jaw is now tremoring.
Vertigo that lasted 6 weeks.
I fluctuate between soft stools and constipation, now.
Muscle twitches all over body, scalp, etc. that goes on all day.
Wedding ring fingers when spreading them apart will move side to side in a shaking nature.
Hot and cold sensations on face and in ear drums.
Starting to lose control of bladder
Sweating more.
Right eye moves vertically when closed as I am waking up.
Dry cough for four months now.
Dry eyes - after the head explosion in December - I literally couldn't get tears to come out. They have started to come back now.
Due to the symptoms, I have been withdrawn and not interested in doing my daily routines.
I get new symptoms every 3-4 weeks and where is this leading to?

Could this be the beginning of any of the diseases mentioned above? I have unfortunately done a lot of research and most of it is scary. From the list provided could you please elaborate on what this could be if this was a case study? Thank you for your time and I look forward to hearing from you.
 
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Scared45mother replied to Scared45mother's response:
Also, I forgot to mention that I have had tight, stiff muscles above my right elbow that contract and my left shoulder constantly is raised up and I have to consciously lower it. My left big toe use to have a buzzing sensation, now it it numb and weak. My right big toe has a vibrating sensation in it all day. It starts just after I wake-up. Thank you for your time, again. I do appreciate it.
 
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worn1 replied to Scared45mother's response:
Scared45mother
Please see your doctor. The symptoms you are complaining of are present in other disease states. You need a complete physical. Your GP is your best bet. GP's deal with a wide range of medical problems and can refer you to the appropiate specialist if necessary.
The human body is complex and sometimes it takes time to obtain a correct diagnosis. Unfortunalty diseases do not read medical journals and appear as something else.
Please excuse any mispelling.
w
 
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Mark A Stacy, MD replied to worn1's response:
Thanks, worn1
Scared45Mother,
I think worn1 suggests the best approach.
 
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Scared45mother replied to Mark A Stacy, MD's response:
I did and she did refer me and they thought it was nothing and it would go away. I have had a MRI, blood work and everything comes back normal.

Dr. Stacey,

Could you please see my last email and let me know what I should discuss with my upcoming neurologist? What do you think this is - please look at it as a case study and what would you lean towards. I have been getting the runaround for 8 months now.

Thank you.
 
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Scared45mother replied to Scared45mother's response:
Dear Dr. Stacey,

My husband is very concerned and scared as I am. Any input from the list I put up above would be helpful. Could this be any of the Parkinson's Plus syndromes, M.S.A., Shy Drager, etc.? I appreciate the time you can offer me and respond at your earliest convenience as my appointment is coming up in the next couple of weeks. Please help us. Thank you.
 
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Mark A Stacy, MD replied to Scared45mother's response:
Hi, Scared45mother,
I am so sorry that you are so scared. If any comfort, when I review your history I assume you have had some type of brain imaging. I also assume this was normal, or you would have included that in the question. If you have not had a brain MRI, this needs to be done.

If this is normal, I think you may have a tremor disorder. Would ask your doctor to check a thyroid profile and review your medications to make sure they are not associated with tremor. (Asthma inhalers often produce a tremor similar to what I think you describe.) Please know that I do not think you have any parkinsonian disorder.

If all OK, and you are still this scared, would have an MRI of the c-spine and a nerve conduction study.

If these are normal, I would want you to stop being so scared. I think you are dealing with a lot of things, but do not think it will be Parkinsons.
 
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Scared45mother replied to Mark A Stacy, MD's response:
Thank you for responding to me. I truly appreciate your time. Enough time has passed that if anything, I am not grieving as most of my symptoms came on two days after her passing so my attention has been focused solely on what my body is going through. I am just so worried that these symptoms aren't going away and no one can help me. This is not an acceptable way of living. I use to do work in medical advertising working with the FDA, etc., and I am an educated woman, so I can understand what you may share with me. Please answer the following questions as listed below. Please?

Do I have to wait for more symptoms to come before getting a diagnosis?

The neurologist thinks the tremor is caused by my herniated, bulging discs, but I can't find any literature supporting that - is that true?

When I fell on my cheek last summer, blacked out and had involuntary swallowing reflex a couple of times, could that have indicated the cause of the progression of my symptoms after the stress I went through with watching my mother's end of life?


Yes, I had an MRI in February and here are the results:

1. No distinct MRI abnormalities of the brain.
2. Mild mucoperiosteal thickening of the paranasal sinuses and small retention cysts at the floor of the maxillary antra.
3. Prominent appearance of the frontal calvarium with prominent frontal sinuses and findings of hyperostosis frontalis interna, with the latter appearing somewhat prominent in degree for a patient of this age. There is no brain atrophy associated with the prominence of the frontal calvarium.
I have bulging discs, herniated C5/C6 C6/C7 and stenosis from the results of the MRI.

Thyroid is normal, but with occasional spike in hyper side, but normal.
Thiamine low - taking B vitamin.

1.What would the tremor be called if I feel it when I have my hands under the pillow, arms folded or laying down? Wouldn't that be an abnormal resting tremor since it is not pill rolling? Can this be essential? Could this tremor ever go away? Please let me know.

2. The explosion in my head in December - what was that? A Stroke? Will the numbness ever go away in my forehead or am I going to have this for the rest of my life?
3. What would explain the continual onset of new symptoms every couple of weeks? Isn't this neurological?
4. fasciculations throughout my entire body and internally, too. What is causing this? Do they ever end or is this the muscles dying?


Again, thank you for your time. It is so hard to understand what is going on and having the sense the doctors are brushing you off as they get to go home, have their normal lives with their families and I still go home bewildered, upset and still feeling awful. I understand that diagnosis can be hard, but if a patient comes into the doctors and says I have a stomach ache and he can't diagnose you with it until you throw-up, but leaves feeling good with his diagnosis while you go home still with a stomach ache and feeling worse by the minute, it can be very defeating. So, any information whether by answering each symptom or an overall direction would be extremely helpful. Thank you, again, for all the time you have given me and thank you in advance for your answers. If you can provide detail and answers, I would greatly appreciate it. I feel bad for taking up your time with the emails - please answer as we can finish our email communication so you can get on with other important emails from other concerned people. Thank you!
 
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Scared45mother replied to Scared45mother's response:
One more question - do tremors start after you feel weakness in your wrists? Mine started that way and is this how it happens with tremors?
 
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Mark A Stacy, MD replied to Scared45mother's response:
Dear Scared45mother,
I am sorry you are so frustrated. I will answer your specific questions below, but want you to know that a normal brain MRI except for perhaps, sinus disease, is really positive.

Do I have to wait for more symptoms to come before getting a diagnosis? I do not know. In your case I would consider ordering a DaTSCAN to help convince me you do not have PD.

The neurologist thinks the tremor is caused by my herniated, bulging discs, but I can't find any literature supporting that - is that true? Nerve injury as a cause of tremor is exceedingly rare. A herniated disc does not necessarily mean nerve injury.

When I fell on my cheek last summer, blacked out and had involuntary swallowing reflex a couple of times, could that have indicated the cause of the progression of my symptoms after the stress I went through with watching my mother's end of life? I do not think so



1. No distinct MRI abnormalities of the brain. GOOD!
2. Mild mucoperiosteal thickening of the paranasal sinuses and small retention cysts at the floor of the maxillary antra. SINUS DISEASE
3. Prominent appearance of the frontal calvarium with prominent frontal sinuses and findings of hyperostosis frontalis interna, with the latter appearing somewhat prominent in degree for a patient of this age. POSSIBLY LONG TERM SINUS DISEASE, BUT SHOULD CLARIFY


1.What would the tremor be called if I feel it when I have my hands under the pillow, arms folded or laying down? I would describe it as a position-specific tremor. If your arm is completely relaxed, it would be a resting tremor. To confirm if it is a resting tremor, try moving your fingers gently, and see if the tremor stops.
Wouldn't that be an abnormal resting tremor since it is not pill rolling? I do not think it would be abnormal; a resting tremor in the fingers can look "pill rolling", but a hand tremor could look this way.
Can this be essential? mayb, but this would likely also be present when you are working with your hands. Could this tremor ever go away? I hope so


2. The explosion in my head in December - what was that? My hunch it was a sinus problem A Stroke? Highly doubtful with a normal MRI
Will the numbness e
ver go away in my forehead or am I going to have this for the rest of my life? I think it will gradually improve
3. What would explain the continual onset of new symptoms every couple of weeks? Isn't this neurological? Forgive me if I offend you, but I think you are just highly in tune to any new symptoms. I do think you have some symptoms to address, but this rapid evolution in a woman otherwise able to make appts and get through a day without other disability, does not add up to disease progression. I also think you may be overwhelming your doctors. I would suggest focusing on the first symptoms - get to the bottom of the initial symptoms, and it may help all the others.
4. fasciculations throughout my entire body and internally, too. What is causing this? Do they ever end or is this the muscles dying? An internal tremor can happen with PD, but also with anxiety and worry. I do not think this means muscles are dying. Ask your doctor about a NCV/EMG test.

 
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Scared45mother replied to Mark A Stacy, MD's response:
Dear Dr. Stacey,

Thank you so very much responding to my questions. I greatly appreciate it! The internet feeds people's fear and when you can communicate with an expert, than you get information you can trust.

You did not offend me in anyway at all. I haven't seen my neurologist since beginning of May, so I have been getting new symptoms that don't seem to stop. I try to stay clear of the doctors until there is a true need as I don't like to bother anyone. I will ask for the additional tests. My neurologist here in the Bay Area said he didn't want to do a DatScan because he found them unreliable with false/positive results. When you wrote above, "I do not know. In your case I would consider ordering a DaTSCAN to help convince me you do not have PD." So, you think I have PD or is this an error in sentence?

It is hard to go from your life with 8 year old twins and a loving family with no health concerns, to an explosion of your body out of control. It can make one very upset, bewildered and anxious when these feelings weren't part of their daily life before.

I had initially posted an additional question above your response if you wouldn't mind answering that, too:

Do tremors start after you feel weakness in your wrists? Mine started that way - one day weakness, two days later, tremor started and is this how it happens with tremors? Is Postural tremor an indicator of disease or is it considered benign? When I wake in the morning and move my wrist/arm, it moves quickly and then starts to go slower - what does that mean? I have started to get a lip/jaw tremor, too.


When I had the explosion in my head that has left it numb ever since and about a week later my upper right eyelid had drooped after feeling a sharp pain/pressure under eye brow area - I just had blood work done for Myathenia gravis and should know this week. It improves with rest, but the numbing/heavy feeling extends to that area, too.


My upper right arm muscles will tighten and loosen and I find myself trying to consciously stop it - is this rigidity? My arms do move freely when I move them, no difference there.


Again thank you for all your time - life is so precious and I want to know that I get to experience my children's milestones. It means a lot to my husband and I.
 
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Mark A Stacy, MD replied to Scared45mother's response:
Hi, Scared45Mother,
I think you should revisit with your neurologist and share the information about the lip/jaw tremor. I do not think the weakness in the wrist was related to the development of your tremor. Agree with the blood work.

If you are diagnosed with PD or myasthenia, please remember, there are many treatments for both, and you should not fear you will not be able to be an active part of your children's lives.

Best wishes


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