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Old 04-08-2010, 11:22 PM #13 (permalink)
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Join Date: 2010
City: Auburn
State: Alabama
Country: US
Posts: 71
kelly11016 is on a distinguished road
Default Re: Need some advice on ALS/Lyme/Mold..Hopin al and wright will give wisdom

So just updating and venting a little so sorry in advance..

My LLMD pulled my IV and said the Rocephin was too low of a dose to do any good but I have been off of it 3 days and have gone back down the hill faster than I did at onset of symptoms. My toes are numb again, my leg jello, muscle aching and cramping, my speech sucks so bad I wont even talk to my friends on the phone. I've lost 10 lbs in 7 days and I'm now taking weight gainer with 5 meals a day and I managed to steal back a couple of pounds. At onset a month ago, I was 122lbs and yesterday I weighed 109. I'm so mad frustrated whatever. I keep biting my tongue when I talk and chew. And now I have this wierd blurry vision episodes.

Today I went to a Chiropractor to get accupunture. He made me do all these wierd neurological exams of which I past most but failed miserably with the drift thing..I did a whole 90 degree turn from my original position which he said told him that I am favoring my left leg, he told me my leg is weak, and sad that my feet and hands are unusually thin in comparison with my other parts, and my reflexes were really brisk. hhhmm..my mom freaked out on him a little because he did not know I had been worked up for MND and I think he felt bad but oh well..he did Xrays of my back and neck and found alot of problems with sublaxation whatever that is and popped and cracked me..

I included before that I was having Carpel Tunnel like symptoms in my arms which started at the same time as fasiculations widespread. When he cracked my neck it sent crazy pain shock feeling down my arm and into my hands. They went totally numb and then have felt better all day...so wierd.

Anyway I'm on my oral antibiotics and I guess I just need a pic me up because this is my one month since all this started and I got my first clean EMG and I feel like I'm in the same place I started. My neuro is now saying with my relapse off Rocephin I might need a second opinion. What do yall think? I'm just so tired. I did however go on a fantastic date this weekend with a great guy..had a blast shooting my AR15.

Also for any Pals reading this, if you could go back before that one dirty emg while you still had a clean one what would you do preventatively to try to halt progression to LMN symptoms? My friend has RSD and we were both just contemplating this tonight. I have all UMN symptoms besides fasciculations. So just asking opinions.

Some cool news from the LLMD, he has a girl my age that was diagnosed with ALS from UAB she was his daughters roommate in college. She came to him in a wheelchair and couldnt speak and the LapCorp nurses said her mom had to hold her head up while they did labs on her. LabCorp nurses said she is walking and went back to work as a nurse at UAB in 2 months on his treatment. My Doc cant talk about her because of Hippa but said he would see if she would be willing to email chat with me. The LabCorp nurses told me all about her so it made me feel like I was in good hands..I'm the most cynical person when it comes to miracles but they were very enthusiastic about the girl's progress. I just wish this could be the typical case for all PALS.

My doc said give him a month to see significant improvements. He offered no promises but did save my family tons of money on too low dose of rocephin but he did add that my GP prolly saved me from a wheelchair because of my acute onset and very fast progression. He said ALS does not put you down in 2 weeks of onset.

Any thoughts from the bravest people I know? Bc I am feeling kinda weak but looking forward to another date this weekend with that awesome guy. I'm going to Jane Wayne day at Ft. Benning and jello leg or not I'm repelling..havent done it since I was in the Army 5 years ago.
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