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Author Topic: seeing a neurologist and trying to get an ALS Test  (Read 1973 times)

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Offline madmexican808

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Re: seeing a neurologist and trying to get an ALS Test
« Reply #40 on: June 08, 2014, 12:30:16 AM »
the thing that makes me so mad about BFS is everyone says "it's anxiety" and stress is causing it. NO IT DOES NOT! It is an autoimmune neurological disorder. SO YOU HAVE NO CONTROL OVER IT! Now, there is a difference from BFS and just someone that say has the occasional eyelid twitch... now that, that can be caused by stress after a traumatic event or just plain old fatigued muscles from being on the computer too much. What i experience is full body BFS all day long none stop but i also get stiffness with it and the sleep disorder with it. Sometimes my muscles just stiffen up, the other day happened at work, had no control over my hand, and I spilled my coffee all over the place. My hand kept on wanting to close up in a fist position. I have a hard time walking when the temp drops below 65 because my always tight hip muscles get extremely tight making it hard to walk. I also get depressed breathing... feeling like i cant get enough oxygen (because it affects the muscles used for respiration) though i have not had that in a few weeks since i have been on a low potassium diet. I have had elevated creatinine for over a year now and that is common with this. How is that anxiety? IT IS NOT. I am not anxious or depressed. IF anything, people saying it is anxiety made me worse. I felt no one believed me and i blamed myself i guess. Finally, i came to except it is just something i have to live with forever. It is rare. Most doctors know nothing about it. It is the mildest form of neuromyotonia. It has nothing to do with ALS or MS. It happens likely after infection with Group A Strep  or viral infection (happens within a 6 month period similar to what happens with PANDAs in pediatric patients). It NEVER progresses. Getting sunlight and not eating a lot of vegetables helps me (avoiding things too high in potassium or if i want them just only a few bites).

I didn't see that the OP advised that he did have BFS, but if he did and I missed it, I'm not trying to attribute everything to anxiety and stress, though it is well known that chronic stress and anxiety can reek havoc and cause the autoimmune system to misfire.  My mother contracted Sarcoidosis, and I believe it was from her inability to handle certain stress.  In the case of BFS, I know nothing about it and do not pretend to, so I will defer to those who do.


I have the habit of constantly looking at my feet to see if atrophy is there. and I been told right leg is slightly bigger than left and I am left handed left foot dominant.
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Offline jilllayy

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Re: seeing a neurologist and trying to get an ALS Test
« Reply #41 on: June 08, 2014, 09:57:01 AM »
i have the same problem as you.

going to see a specialist on the 16th

look back at old pics and i bet you it was always there
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Offline madmexican808

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Re: seeing a neurologist and trying to get an ALS Test
« Reply #42 on: June 08, 2014, 07:58:34 PM »
looked at some, can't really tell due to angles. but I did sprain my ankle and had tendonitis was diagnosed with it 3 months later.  idk if sprains and tendonitis cause atrophy
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Offline jilllayy

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Re: seeing a neurologist and trying to get an ALS Test
« Reply #43 on: June 08, 2014, 08:58:51 PM »
tendonitis can i have read
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Offline madmexican808

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Re: seeing a neurologist and trying to get an ALS Test
« Reply #44 on: June 08, 2014, 09:14:10 PM »
during strengthing for my left foot, right foot started feeling weak but can tip toe walk on my toes and walk and run up stairs. ever just had random times of feeling like your ankle was weak?
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Offline jilllayy

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Re: seeing a neurologist and trying to get an ALS Test
« Reply #45 on: June 08, 2014, 09:18:27 PM »
i do all the self testing like you

when this first started the right side of my body which is dominant was weaker. but then i starts lifting little weights because im a girl
and doing pushups everyday and im getting better and better at it. i started with not being able to do 2 pushups and now i can do 10 in a row break a few seconds and go up to 20.

could i do that with als? no

but! now that i focused on strengthing my right side my left side feels weaker now and the fear starts all over lol
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Offline madmexican808

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Re: seeing a neurologist and trying to get an ALS Test
« Reply #46 on: June 08, 2014, 09:30:15 PM »
Damn ***** being a hypochondriac. dem feels
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Offline thenomnomnomicon

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Re: seeing a neurologist and trying to get an ALS Test
« Reply #47 on: June 08, 2014, 09:33:45 PM »
Pray to Zyzz for guidance and muscularity.
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Ph'nglui mglw'nafh Cthulhu R'lyeh

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