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joe stockton

New member
Joined
Feb 10, 2008
Messages
9
Reason
Learn about ALS
Country
US
State
california
I would like to know if these symptoms I am experiencing are related to ALS. I appreciate the knowledge on this site, because it appears many of you know more than my doctors.

MY STORY:

White Male, 49 years of age. Two Summers ago I was working on the family ranch, a rough day of labor, mostly with post hole digger. Came home and while removing my cowboy boots I got the worst cramp Ive ever had in my life in my left calf. took about an hour to die down...however the tightness never went away.

In September of this year, I started getting a flare up in the same calf muscle. for a month heating pad, linaments etc. Around late October started to get massive burning, tingling and numbness. Soon this burning, tingling and numbness spread throughout my body. By Christmas I was miserable with burning stretching to my face (across the bridge of the nose and cheek) leaving a red rash of my cheek. At this point I believe I was have slight twitching (fasciculations), however uncertain due to the burning, tingling and numbness masking it. When I took hot showers I just exploded with burning pain and the same with alcohol, including rash on foot that disappeared in an hour.

On 1-4-08, I was burning, tingling, and numbness with blurry vision in left eye that I went to the best hospital in the county and they did an EKG, complete CBC, BP, Lyme and physical examination. Everything was normal except I was diagnosed with a bi-fasicular disorder of the heart (weeeeeeeee). As for the burning, tingling and numbness, he told me to look up anxiety and gave me a script of ativan.

went to see my GP, another million dollar blood work up alls fine. referred to cardiologist put on monitor for a month, alls fine and told me to look up anxiety! more ativan

final referred to a respectable neuro, had the consultation, he examined and tested me...lots of poking...he asked me if I had any fasciculation...I said no...so, because I had an uncle die of MS in the 50s...hes looking for MS and has ordered a MRI with contrast and gave me Neurontin. I had an MRI three years ago without contrast and nothing. The EMG is next, which also has to be approved by the HMO...so count on two months away.

So I start taking the Neurontin and quess what all the burning, tingling are gone with reduced numbness. HOWEVER now all that is left is FASCICULATIONS, in my painful calf the other calf, top of my head, chin, left side, back, left side of hand and top of thigh... more noticable with a cover on, no appearance of atrophy, however bones and popping alot.....now Im worried that this isnt MS at all and more mirrors the symptoms of ALS. Ive never heard of this kind of burning with ALS, however Ive never hear of fasciculations with MS.

Could somebody give me some direction here? I really stressed out about this endless transient pain issue and the possibility of ALS. Thank you to all and God Bless.

Joe Stockton
 

ZenArcher

Senior member
Joined
Feb 22, 2007
Messages
672
Reason
PALS
Diagnosis
02/2007
Country
US
State
PA
The only symptom you've mentioned that has anything to do with ALS is fasciculations and they can be caused by many other things. The rest of the things you discussed are not seen in ALS so relax it isn't ALS.
 

joe stockton

New member
Joined
Feb 10, 2008
Messages
9
Reason
Learn about ALS
Country
US
State
california
Thanks Jeff

I have enjoyed your posts while Ive been here, you are a very knowledgable man. You actually make me feel better than my doctors have. However I starting to get a little fed up with medicine these days...I mean doctors are one inch short of being NASCAR drivers..."here this drug is better" (because Im getting paid by the pharma company) I envision the day that doctors have pharma patches all over their lab coats, like NASCAR drivers. Again thank you, if you ever need anything on this end of the Coast (SF) let me know, I know a lot of biotech out here are doing things. Joe
 

TomR1972

Active member
Joined
Mar 25, 2007
Messages
55
Reason
PALS
Country
US
State
Ca
Hi Joe

I am in your boat kinda, still looking for answers. I get to have a EMG/NCV & SSEP done at Stanford at the end of this month. My Neuro there tells me with all the ALS patients he's seen that I don't fit the bill however talk on here proves that just an office visit is not sufficient for a diagnosis.

I have fasciculations that erupted in both legs and elsewhere that have since calmed down a great deal but do remain.

What respected Neuro are they sending you to if you dont mind me asking? I wish I could help you but I am lost and forced to rely on the medical community and the waiting game.
 
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