Jen's story
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Author:  Cog1st [ Thu Nov 27, 2008 10:24 pm ]
Post subject:  Jen's story

Taken from Jen's post at our forum:

Hi, I have been told many great things about this site and the positive people making up the group. I have shared w/ Dana and feel very blessed to have support from people going through this battle together. (and also wisdom from those farther along)

I have battled this uncertainty for over a year now. The journey up til now has been long and weary!!
I have 4 small children (ages 7, 5, 3, 1) This past year i feel like i am not the same person. I know that with every illness it changes you (for the best or for the worst) I feel into a depression.

I will try to make this as short as possible.....I began having fainting spells - then a sharp, shooting pain in my jaw and head....went to a walk in clinic on a Sun. morning.......they sent me straight to the ER thinking Stroke. There they did a CAT scan which showed abnormal ....then MRI showing white matter lesions in my brain.

The next day i saw a rheumatologist and neurologist to rule out lyme, ms, lupus. They said "oh it is probably ms because it likes to present about 5-6 months after childbirth." Well my youngest was 5 mths. (lyme was neg. lupus - least from their testing) This paticular neuro then said - "are you tripping YET, are you numb YET, the "YET" put so much fear inside of me - i had to find another route.

My husband and i proceeded to search and study. In the mean time i began getting numbness in my hands and feet at night. Okay, i thought this is weird am i bringing this on ...b/c it seemed the more i read i ended up w/ the symptom. Was it all in my head??

I live in Tn and we were referred to a neurologist in naples Fl. so we went - he is world known (oprah) I am not at all praising him. But he does alot of natural remedies along with conventional. He looked at my MRI and said it did not look typical of Ms lesions but he believed that it was. He put me on Glutathione iv and B-12 inj. along with omega, vit D3 and other supplements. This was in Nov. 2007 by Feb.2008 my tongue had started feeling numb and burning. He suggested that i get a local neuro.....

well here we go ...from the start again , the whole work up , the tests etc...let me speed this up...........the next neuro thought that it was not MS and took a different dirrection as mini strokes. Well when all of these tests came back neg. she then wanted to put me on anxiety med. and Depression med. My problem is not this - these are becomming a symptom of the problem. Plus she concludes that i am stressed from having 4 childrn.

needless to say i finally found a new neuro. who began again w/me. She thinks okay - its MS, lets confirm with a Visual evoked potential test............ well that came back neg. okay lets confirm w/ another mri of the spine to find lesions there would be a confirmation - well this was neg. too.............. sense seeing the dr. in Florida i have had 3 rounds of solumedrol 1 gram steroid 3 different times. only getting worse, with symptoms adding daily- vertigo, roaring and ringing in my ears and head, concentration problems, numbing sensations, hearing sensativities- I have to put cotton in my ears just to clip my childrens nails, vibrations in my head and body, hard to focus, brain fog,small occasional tremors, stomach pains, throat soar on the outside, stiff neck, headaches, facial pain, lock jaw, my vision appears like looking into a heat wave, lock jaw, muscle twitches/cramps, confusion.......etc.........let me fast forward

I was connected to a lady here in my town who(i believe) was sent from the Lord and we go over story symptoms and within a week - i saw the Dr's she see's in GA. They retested for lyme -and it showed POS. I am on 3 natural antibiotics and feel even worse (herxing??) the doctors say it is ok - you sometimes feel worse before you get better......... because of all that you are killing!

I do appeciate you taking the time to read -I will gladly listen to any wisdom you can share. I feel as though, like i said before- it took a while to come to terms w/ the MS possibility, now ......could it really be Lyme.

I focus - i know - too much on the "brain lesions" but that is so bothersome to me. Who knows - they could have been there long before they were discovered? Can they heal? (remylinate?)

Can Lyme cause MS. My doc. seems to think that their may be a link to Lyme causing ms, als, alzheimers, parkinsons?????? My symptoms are daily - they never go away, i was told by the ms doc's that normally they go away and you occassionally have a flare up - unless it is progressive! my symptoms seem to move around daily - and my bad days are out numbering the good!
Thanks again for your time, Jenny

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