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Author Topic: seeing a neurologist and trying to get an ALS Test  (Read 1206 times)

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Offline NeverAgain2

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Re: seeing a neurologist and trying to get an ALS Test
« Reply #30 on: June 05, 2014, 07:38:50 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.
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Offline ShawnW

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Re: seeing a neurologist and trying to get an ALS Test
« Reply #31 on: June 05, 2014, 07:46:21 AM »
You have BFS! ANd maybe BFCS. It's a mild neurological disorder and I have it too. Anxiety does not cause it. If you have anxiety that is a learned behavior which comes secondary to having to live with this disorder which is the mildest form of neuromyotonia. In my experience you will have it forever but it will get better. The initial flareup period lasts a couple months of fasciculations that will stay in certain parts of your body before moving to another part. Did you have infection with a viral illness or strep within a 6 month period before developing symptoms? That seems to trigger this reaction which is probably autoimmune related. It takes about a year before you probably will accept that you are just going to have to live with this forever but it does get better and it will never get worse, you won't ever be crippled or anything like that. It is called "Benign" because it does not progress into muscle atrophy or crippling the patient in any way. Stay off the internet... there is too much misinformation about MS and ALS and this has nothing to do with those diseases at all. You will not get weakness. What happens, in my opinion, is a person gets strep or some type virus that can cross the blood brain barrier in the brain. Then it causes an autoimmune reaction. The reaction it causes is during plasma ion exchange at the neuromuscular junction it makes the body attack that by firing it off all the time, a type of peripheral nerve hyperexcitability. It has a lot to do with sodium and potassium balance. So that's what happens. You have no control mentally over that, so you just need to accept it and move on.

Not sure where you are getting your information but you are getting bad information.  No one knows why people get BFS, autoimmune is only one theory.  But, I find it hard to believe that so many with BFS had stories of extreme emotional stress before the initial twitching.  I also find it hard to believe that so many who have it are also health worriers.  Is it a coincidence you, I and several other here who likely have BFS are here?

My theory, and it's only a theory is that stressor (virus, stress, possibly autoimmune)+genetic predisposition=BFS.  So, be careful when you promote your theories as facts, because that is the way you spread misinformation.
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My insight, thoughts, experiences or advice that may be posted in this forum are not meant as a substitution for the advice of your physician.

Want to know how to address your anxiety?
http://www.anxietyzone.com/index.php/topic,93402.msg521266.html#msg521266

Offline madmexican808

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Re: seeing a neurologist and trying to get an ALS Test
« Reply #32 on: June 05, 2014, 02:41:49 PM »
what is BFCS?
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Offline ShawnW

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Re: seeing a neurologist and trying to get an ALS Test
« Reply #33 on: June 05, 2014, 02:44:10 PM »
what is BFCS?

Basically twitching with cramping.
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My insight, thoughts, experiences or advice that may be posted in this forum are not meant as a substitution for the advice of your physician.

Want to know how to address your anxiety?
http://www.anxietyzone.com/index.php/topic,93402.msg521266.html#msg521266

Offline madmexican808

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Re: seeing a neurologist and trying to get an ALS Test
« Reply #34 on: June 05, 2014, 05:30:00 PM »
hmmm, I have had neck twitching, right forearm twitching and a cramp once on my left forearm. does that count? lol
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Offline thenomnomnomicon

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Re: seeing a neurologist and trying to get an ALS Test
« Reply #35 on: June 05, 2014, 05:36:53 PM »
Can a mod delete this comment? I double-posted. My bad.
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Ph'nglui mglw'nafh Cthulhu R'lyeh

Offline thenomnomnomicon

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Re: seeing a neurologist and trying to get an ALS Test
« Reply #36 on: June 05, 2014, 05:39:07 PM »
Mad, dude. Don't search for a diagnosis. Unless something is seriously wrong with you, no good is going to come out of labeling it.

I have seen the people on the BFS Forums. If anything, I believe cleaving to that diagnosis does them more harm than it does good.

Accept it as anxiety. Treating the anxiety, even if it is 'BFS', will ultimately help you regardless.
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Offline madmexican808

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Re: seeing a neurologist and trying to get an ALS Test
« Reply #37 on: June 05, 2014, 06:02:52 PM »
trying too, my shin muscle and ankle are sore and ankle being stiff sort of and its causing me to think its an als bs. when I know for a fact als does not cause joint stiffness and pain.
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Offline ShawnW

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Re: seeing a neurologist and trying to get an ALS Test
« Reply #38 on: June 05, 2014, 06:42:44 PM »
trying too, my shin muscle and ankle are sore and ankle being stiff sort of and its causing me to think its an als bs. when I know for a fact als does not cause joint stiffness and pain.

And like I said, it's an unfounded worry.  I would tell you if I was concerned.
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My insight, thoughts, experiences or advice that may be posted in this forum are not meant as a substitution for the advice of your physician.

Want to know how to address your anxiety?
http://www.anxietyzone.com/index.php/topic,93402.msg521266.html#msg521266

Offline madmexican808

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Re: seeing a neurologist and trying to get an ALS Test
« Reply #39 on: June 06, 2014, 03:15:08 AM »
thank you for your help
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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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