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My story.

Aug 12, 2010 - 2 comments

My name is Kelly, I'm 32 and live in Lincoln, Nebraska.

Symptoms: Extreme fatigue, bilateral forearm and lower leg weakness, gait disturbance, ataxia, dizziness/unsteadiness, one 'attack' of vertigo (lasted about 9 days), really bad heat intolerence, hand tremors (not all the time, just when I do too much), dropping things, no reflexes in knees (neuro hit them 3x before it moved slightly), low blood pressure, reoccuring MRSA infections, TN, syncope (1x), muscle twitches (random parts of the body but lately more in the face/neck), random intense bone pain that lasts about 5 seconds, lower back pain, also having a harder time forming sentences and finding the right words, invisble feeling in forearms, and while lying down my legs feel invisible as well.

MRI/MRA (brain/neck/spine, with and w/o dye): Negative
VNG: Negative for inner ear disorders
EEG: Negative for seizures

B-12 (390): They said it was low, not deficient. I am doing monthly injections for six months and then they'll recheck levels. After 4 injections I haven't seen any improvements.
Lyme: Negative
West Nile: Negative
ANA: Slightly elevated
SED: Slightly elevated as well (but had a MRSA infection at the time of test)
Anemia: Negative
A1C: Negative for diabetes.
Thyroid: Negative.

Next neuro appt: August 31st, 2010

Thanks for reading.

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1386048 tn?1281012333
by michelleislay, Sep 07, 2010
ok, so you have had  mri's and a whole slew of other tests.  i sure do hope you can get in to a neuro who is skilled enough to help you figure this out!   a monkeymum of 4 needs to be on her toes!!  (and your kiddies are beautiful by the way!!)

thinking of you kelly,

xo michelle

1453524 tn?1295627371
by Jennie1977, Sep 25, 2010
Wow.  I decided to try one of these forums the other day not expecting much and what I found is that I'm not alone.  Kelly you and I are so alike.  I know how frustrating this is and how scary.   I've been like this since I was 14 and am now 33.  I'm going to the Cleveland clinic soon.  Seems to be my only hope.  I also have four children and would love to dance with them like I used to.  Keep your chin up.


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