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Serenity Now

How To Be Taken Seriously By Neurologist

8 posts in this topic

In my mid 30s, starting 8 - 10 years ago, i started having insomnia, partial loss of smell, stomach issues, and my handwriting became small/sloppy.  

Three years ago, I got tinnitus, and my fatigue started, which is now  worse.  I had more twitches and numbing.  I've gotten clumsier in the last 2 years.  

Last year, people started commenting that  my walk was off and that I have a slight limp.  I also started having blurry vision on/off, which is now constant.  My dreams became more vivid, and  I have woken up hitting the wall or kicking.

My left shoulder started hurting 10 months ago. Nine months ago i noticed my arm wasn't swinging when walking. Four months ago, I started getting internal vibrations.

In the last 3 months, I had a tremor in my left thumb at rest, but it was only for a few weeks.  My eyes became dry, and I blink less. My left arm started feeling heavy, and my legs/arms feel tight.  My teeth chatter all day, and my tongue moves in waves up/down, and it quivers. 

This last month, I started getting burning sensations in my left leg/face.  I get dizzy looking down if I don't move my head.

One doctor said nothing was wrong with me, nor did care about my abnormal tongue movement.  It took 4 tries for a reflex in my left knee.  i didn't feel the vibrations in my left foot.  I was told I had some hearing loss in my left ear.  

Then I went to a neurologist, whose in the same medical group.  During the Romberg test, I stated going backwards.  My body shakes doing the tandem walk. He said my left hand was weaker.  At first, he said there were some neurological problems with me, but he didn't know what.  He wanted me to talk to an autonomic specialist.  After  he talked with that person, he said my problems were functional, although the specialist had never talked to me.  The neurologist diagnosed me with neuropathy. 

The neurologist didn't care to hear about my non-motor symptoms.  He is very young, so i don't know how much experience he has had with Parkinson's.  I asked him for a referral to but he declined.  He told me to take vitamins, to do physical therapy and to take water classes. 

How do I get someone to take me seriously?  I have tried calling several MDS', but they need a referral.  Thank you in advance, and I apologize for writing so much.

 

 

 

 

 

 

Edited by Serenity Now
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It sounds like your doctor may not have the expertise to tell if you have Parkinson or something else.  Referral to a specialist in movement disorders may be helpful.  Some of your symptoms sound like PD and others do not and in that case I would be suspicious that something other than PD is going on.  A DAT scan could tell a doc with less expertise whether there is a dopamine issue and that may be worth pursuing.

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Thank you, Dr. Okun, to take time out of your busy schedule to answer my question.  You do a wonderful service here!! 

I found sn MDS in a different part of my state, who will take self-referrals.  

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Terrific I am so glad you found someone.

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Could something like NBIA cause loss of arm swing, loss of smell, tongue movement, constant tightness in thighs and reduced blink rate?  A friend recorded my blink rste, and I blink 5 times a minute, which was not always the case. 

Thanks. 

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Possible but NBIA usually looks different and a brain MRI shows a lot of iron in specific areas....

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Good luck and glad to help in some small way.

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