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» LymeNet Flash » Questions and Discussion » Medical Questions » Idiopathic Multiple Cranial Nerve Polyneuropathy

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Author Topic: Idiopathic Multiple Cranial Nerve Polyneuropathy
Tracy S
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Member # 11246

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This is what the idiot specialists called it. Here I am, 7 months later. Initially, all my facial muscles were twitching and spasming on the right side-then paralysis. Along with this I smelled bad smells and my ears were blocked. Steroids and antivirals they give me.

10 days after the conclusion of the meds - here comes the twitching on the LEFT side - and now that side paralyzes. Hospitalized with IV steroids, then a 20 day supply of oral pred to go home with.

Numerous blood work, MRI, MRA, LP, CT Scan - you name it, everything negative.

During these months I have flareups, my eardrums vibrate terrible, ringing in left ear, right side of face has great improvement, left side has no improvement at all.

Latest flareup leaves me with double vision, crying jags, terribly nervous and overstimulated, the ear noise, and I wake up in the middle of the night vibrating - it feels like that, but not to the touch. Just inside of my neck and shoulders.

The front of my shoulders hurt deep inside and my feet feel funny to walk on when I get up in the morning, kind of sore.

The only strange thing I find that is not indicative of Lyme is the fact that I am not tired. The only time I'm tired is during one of these flare-ups, because I feel mentally exhausted, not physically.

I also have swollen legs over the past few months, from the knees down and it is pitting.

I am going to see Dr. H. in NY, hopefully I can end this insanity.

Does it seem like Lyme to you?

--------------------
Tracy

Posts: 24 | From NE PA | Registered: Feb 2007  |  IP: Logged | Report this post to a Moderator
achey
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YES
Posts: 663 | From NH USA | Registered: Sep 2004  |  IP: Logged | Report this post to a Moderator
Lymetoo
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quote:
Originally posted by Tracy S:

I am going to see Dr. H. in NY, hopefully I can end this insanity.

Does it seem like Lyme to you?

1. Good choice!
2. YES!

--------------------
--Lymetutu--
Opinions, not medical advice!

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Neil M Martin
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The Cottonpatch Medical Dict. defines
"idiopathic": patient pathetic, Dr. idiot.

--------------------
Neil

Posts: 697 | From Tucson, AZ USA | Registered: Apr 2002  |  IP: Logged | Report this post to a Moderator
Tracy S
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Even if I'm not tired very often and I don't have debilitating muscle aches (just annoying ones here and there) ? The neuro stuff is 95% of it.

--------------------
Tracy

Posts: 24 | From NE PA | Registered: Feb 2007  |  IP: Logged | Report this post to a Moderator
   

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