Thread: ALS/Lyme Help
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Old 04-06-2010, 01:53 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: ALS/Lyme Help

Thank Zaphoon,

I'm sorry if I sounded like a butt last night. I had a terrible day with symptoms yesterday and I took it out the wrong way. I bit my tongue all day yesterday and sounded like a blithering idiot trying to get the right words out and it got me upset plus my jello leg was trying to be a butt however, I chose to stick it to the man and jumped up and down on it for quite awhile as if to say "Take that stupid leg"... I had my first appt with my LLMD on Friday and he promises he can heal me in one month. I was skeptical but like I told another PAL today..I went to LabCorp and the nurses were all bragging on my doctor because this 25 yr female nurse diagnosed with ALS from UAB came to him in a wheelchair and now she is walking and went back to work..The nurses said it was a miracle they first drew her labs in a wheelchair and her mom holding her head up and then two months later she walked in able to talk..so made me feel like I'm in good hands.

He checked all my muscles and concluded I had no clinical weakness he also checked my cranial nerves. My neuro has never done any of this. My reflexes were fine which is awesome because usually mine are kick you in the face brisk. I was glad that my normal reflexes were noted in my chart for my neurologist. So he noted no more UMN involvment at all and no evidence of weakness so that was a charted improvement from my neuro two weeks ago. He said I was on too low of dose of Rocephin and he pulled my picc line yesterday and I start orals on Monday.

I just wanted to let everyone know I am now seeing improvements now however small, still improvements. I have lost a ton of weight so if anyone has any suggestions let me know..my doc says its from the Rocephin.

Here are my improvements so everyone reading or following my story can know that I am getting better...

-No more hyperreflexia, no babinski
-down to one or two muscle spasms a day..some days none
-very very few fasciculations, I had 8 yesterday (so few I can count)
-no more vibrations/buzzing
-only right hand going to sleep at night but only every two nights or so
-no weak feelings in my legs
-my tongue has gained some mass, seems more normal now
-no jerks or clonus anymore

New things or non-improvement

-still have jello leg feeling sometimes..only happens after exercise now and leaves with rest
-biting my tongue and bad speech..seems worse..doctor says its anxiety from the Rocephin reaction
-lost a significant amount of weight holy crap
-extreme chest pains that double me over and I cant breathe
-migrating pain in all limbs
-blurry vision in left eye

so there ya go..I feel like the most noteable improvement is the disappearance of the fasciculations and hyperflexia..Zyphoon in your experience with PLS does your reflexes go from normal to brisk and change?

I wish I knew how buddy was doing been worried about him..my doctor says it can get pretty bad on the antiobiotics for people with bad infections..he said my doctor putting me on Rocephin prob saved me from a wheelchair due to my quick progression...so I wish I knew buddy was ok.

I'm going back to Auburn tomorrow and going back to my cheerleaders..whatever this mess is..its not going to keep me from the joys of my life any longer.

Love you guys and sorry for the butt head post. Been on edge lately but thats no excuse.

Kelly
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