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» LymeNet Flash » Questions and Discussion » Medical Questions » Undiagnosed and confused

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Author Topic: Undiagnosed and confused
Tracy S
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Member # 11246

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Hi everyone - hopefully this won't be too long....

Right before New Years Eve I started having funny tapping noises in my ears, the next day my jaw was trembling, the next day I couldn't control the muscles in my mouth when I tried to talk and my jaw was pulling so far to the side and clenching together I thought my teeth were going to smash. Diagnosed with BP - even though there were many more symptoms then the 7th cranial nerve. I had loud noise in my ears. The only way I can explain it is that is sounds like zsh zsh back and forth between both ears. I kept feeling like I had a lump in my throat and couldn't swallow. I was dizzy and had double vision. I even had a spasm in my lower back.

They put me on steroids and antivirals. About two weeks later it seemed to come back with a vengeance and this time on the OTHER side, so my paralysis is bilateral. But all those strange symptoms again - including terrible smells. I could smell my cat from across the room.

It took about four weeks for the vision/dizziness to go away and I could finally function again.

Neuro said nothing showed in CSF and bloodwork except that my protein levels were high, indicating inflammation. Said it was probably a reaction to the flu shot I had six weeks prior to first symptom.

I now have terrible swelling from the knee down, and twitching above my knees and in my calves.

I also have what I can only describe as weak nerves. If I go to open a car door or desk drawer and the handle hits the nerves behind my fingers the wrong way, I got shocking zapping feelings in my hand.

The facial paralysis hasn't improved much in the five to six months I've had it.

The past week or two the double vision has returned. It seems worse in sunlight or fluorescent lighting and when I'm looking in the distance.

Also - the ear noise is back zsh zsh zsh back and forth between both ears. Almost like a vibration.

I would think if it were from the flu shot, it wouldn't be coming and going like this.

I did have Lyme tests - Elisa and Western Blot - blood and CSF...all negative of course - but I was on steroids when the testing was done.

What does anyone else think?

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

Posts: 24 | From NE PA | Registered: Feb 2007  |  IP: Logged | Report this post to a Moderator
Penn92
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You need to find an LLMD and get tested properly through a lab that specializes in tick-borne diseases. Even then, you sound VERY Lyme-ish to me. I had many of the same symptoms you have, except not that severe and not all at once.

The steroids will have done you a disservice by dampening your immune response when you needed it most, so that might explain the severity of your symptoms.

Post on the seeking a doctor board with your city/general area in the subject line and you'll get responses pretty quickly. My LLMD is in central NJ, so if that's close to you, let me know and I can PM you his info.

Sorry you're here, but glad you found us!

--------------------
Getting older is when we would rather not have a good time
than have to get over it. - Oscar Wilde

Posts: 386 | From Radnor, PA - where the ticks run free | Registered: May 2006  |  IP: Logged | Report this post to a Moderator
Tori
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BP is a Lyme signature.... so are the other symptoms. Do what Penn92 says.

Sorry to see you here but you are in good hands now. [Smile]

Posts: 69 | From Wisconsin | Registered: Apr 2007  |  IP: Logged | Report this post to a Moderator
Tracy S
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Penn - I'm from the Scranton/Wilkes Barre area. I called a Dr. S's office in Bloomsburg but they are not taking new patients. He himself has it and is down to working only three days per week.

I tried to PM you and it said your mailbox is full. Can you PM me with your doctors info? And do you have a roundabout figure of what the upfront initial cost would be? I need to budget now so I can cover it. But do or die, I'll come up with the money to find out what the heck is wrong with me already.

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Tracy

Posts: 24 | From NE PA | Registered: Feb 2007  |  IP: Logged | Report this post to a Moderator
Carol in PA
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quote:
Originally posted by Tracy S:

Penn - I'm from the Scranton/Wilkes Barre area.

When you're looking for a doctor, remember that New York City is only a couple hours directly east of you.

This gives you more options.

Carol

Posts: 6947 | From Lancaster, PA | Registered: Feb 2004  |  IP: Logged | Report this post to a Moderator
Tracy S
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The sound in my ears is terrible these past few days ---- and in the middle of the night I feel like I'm vibrating if that makes any sense. I wake up and sometimes think I'm dreaming --- but then realize that my whole body feels like it's been shaken up. does anyone else have this?

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Tracy

Posts: 24 | From NE PA | Registered: Feb 2007  |  IP: Logged | Report this post to a Moderator
Cobweb
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All this sounds very familiar to me-so keep up your search for an LLMD that's accessible to you.

First things first-get diagnosed-it may take a couple months once you do get an appointment. If you see an LLMD it will all make sense- I cried with relief once I was diagnosed.

Take Care,
Carol

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