I feel like calling my neuro today...

Information about how to manage or reduce the severity of BFS symptoms

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I feel like calling my neuro today...

Postby Tiber2011 on August 12th, 2013, 1:05 pm

Everything has just blown up in me...

The calves were twitching, and then my left one cramped up while walking.

Fingers feel buzzy and fuzzy; maybe even decreased sensation.

At the store, I felt a little light-headed while shopping...I also haven't slept for more than 5 hours a night in about 2 weeks. And it's not REM sleep.

Area above my right wrist gets these weak "signals," like a pulsation inside that makes it feel weak for half a second.

Right shoulder gets buzzy and fuzzy and the sensations grow stronger until I put it in a different position.

Left leg is buzzy and "racheting."

I know my neuro's assistant will be annoyed if I call and tell these things and inquire about MS or MND. The Dr ( MS specialist) told me "take MS off the table" - word for word. I'm at work and all I want to do is take a nap....I rarely feel bothered by such things when I lie down.


The ONLY time I am NOT bothered by BFS is when I'm biking, in the sun, on a warm day. I didn't think I could still bike until July. Went on Lyrica, felt good, bought a 1982 Schwinn.

Then days like this occur.....fuzz, buzz, twitch, anxiety.
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Re: I feel like calling my neuro today...

Postby johnnythejet on August 12th, 2013, 4:01 pm

Your anxiety is eating you alive. If you were the LEAST familiar with MND's and re-read your recent blow-up (along with everything else) you would understand that there is no way in h3ll that this is a MND. In fact, it is so much different that these days should COMFORT you knowing beyond any reasonable doubt that this is benign.

You might as well call the neuro's office with "My runny nose has me worried about MND." Of course they will be annoyed, as they have actual victims of MND's in need of real help. We are little more than mental cases.
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Re: I feel like calling my neuro today...

Postby bobajojo on August 12th, 2013, 4:20 pm

Tiber,
The feeling of lightheadedness in a store is SO common. I have no idea if its related to neural hyperexciteability but I would bet anything that the fluorescent lighting is what caused it. I don't usually encourage people to use google in any way on here but this one is safe. Google fluorescent lighting and lightheaded. I had it for years. I finally put it together when I realized that everytime I got the feeling, I was in a department store or some store with fluorescent lighting. In talking with hundreds of BFSers on here, I've realized that this is actually quite common. Again, no idea if its related.

http://www.ehow.com/list_6292709_sympto ... ights.html

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Re: I feel like calling my neuro today...

Postby perform on August 12th, 2013, 4:45 pm

I can confirm the light-headedness in a store. This happens to me. When you're extremely anxious you are attuned to things you wouldn't normally think much of. Anxiety is your biggest hurdle in this situation.
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Re: I feel like calling my neuro today...

Postby Tiber2011 on August 12th, 2013, 8:42 pm

bobajojo wrote:Tiber,
The feeling of lightheadedness in a store is SO common. I have no idea if its related to neural hyperexciteability but I would bet anything that the fluorescent lighting is what caused it. I don't usually encourage people to use google in any way on here but this one is safe. Google fluorescent lighting and lightheaded. I had it for years. I finally put it together when I realized that everytime I got the feeling, I was in a department store or some store with fluorescent lighting. In talking with hundreds of BFSers on here, I've realized that this is actually quite common. Again, no idea if its related.

http://www.ehow.com/list_6292709_sympto ... ights.html

-Matt


Oh my gosh, I have been dealing with sensitivity to neon and LED lights since I stated getting BFS symptoms. I have been so hyper-sensitive to MS and ALS symptoms that I am constantly on the lookout for "optical neuritis" and neon lights really bother me now.
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Re: I feel like calling my neuro today...

Postby Tiber2011 on August 12th, 2013, 8:51 pm

johnnythejet wrote:Your anxiety is eating you alive. If you were the LEAST familiar with MND's and re-read your recent blow-up (along with everything else) you would understand that there is no way in h3ll that this is a MND. In fact, it is so much different that these days should COMFORT you knowing beyond any reasonable doubt that this is benign.

You might as well call the neuro's office with "My runny nose has me worried about MND." Of course they will be annoyed, as they have actual victims of MND's in need of real help. We are little more than mental cases.


Johnny..I've been trying to deny it, stating it's part of my nature in wanting to "know" everything. But it's eating me whole.
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Re: I feel like calling my neuro today...

Postby Yuliasir on August 12th, 2013, 9:44 pm

Tiber,
one thing stopped me. you say you are very skinny.
have you ever seen endocrinologist? Some endo disorders might give you plenty of autonomous symptomes you suffer and also may tune up your mind in a way that you can not resist obsessive fears.
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Re: I feel like calling my neuro today...

Postby Tiber2011 on August 12th, 2013, 10:11 pm

Yuliasir wrote:Tiber,
one thing stopped me. you say you are very skinny.
have you ever seen endocrinologist? Some endo disorders might give you plenty of autonomous symptomes you suffer and also may tune up your mind in a way that you can not resist obsessive fears.


Yulia, I was given autonomic testing by the 2nd neurologist I saw. He misdiagnosed me after the sweat, glandular, breathing and tilt-table test with probable "Small-Fiber Neuropathy." I told this to the 3rd neurologist who said that is absolutely not possible in my case. It made sense, because there has to be an underlying cause for SFN - usually diabetes. Because of that neurologist (he also works in a university hospital), I've had trouble trusting doctors.

However, I have hypermobility as well....perhaps endocrine disorders and hybermobility are connected?
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Re: I feel like calling my neuro today...

Postby TyWebb on August 12th, 2013, 10:21 pm

I can only tell you that you need to get some sleep. 5 hours will not do it.
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Re: I feel like calling my neuro today...

Postby Yuliasir on August 12th, 2013, 10:44 pm

I can tell you only that hypermobility and mood disorders are tightly interconnceted. I am hypermobile and I am GAD since early childhood. Skinny hypermobile person should really think about endo visit on my point of view. Not only diabetes can cause SFN, but there should be also something making your stature so thin as you describe.

Hypermobility comes from genetic changes resulting in weak cartilage. It is highly probable (looking on amount of mood disordes in our cohort) that they also have some changes in the brain structure and in the muscles resulting in BFS combined with mood disorder. This unholy triade is very common here.

But I still would suggest endo check. Two or three neuros were TRYING to find something falling into their field of knowledge and failed. Of course they do because you do not have neurological disorder, and it is funny to blame doctors and mistrust them, because you brought for them a disorder which they just can not recognize and treat. Would you blame an oncologist who can not heal your allergic sneezing?
Our doctors are not neuros. If you would see the stoires of people who managed to live in peace with thir BFS, you can see that their doctros were psychiatrists, psychologists, sometimes endo, and - from the point of physical symptomes treatment - chioropractics, physiotherapists, moderate healthy diet and regular schedule. No one of us had neuro to propose a helaing protocol, because our disorder is not from the big neurology area.
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Re: I feel like calling my neuro today...

Postby Tiber2011 on August 12th, 2013, 10:57 pm

Yuliasir wrote:I can tell you only that hypermobility and mood disorders are tightly interconnceted. I am hypermobile and I am GAD since early childhood. Skinny hypermobile person should really think about endo visit on my point of view. Not only diabetes can cause SFN, but there should be also something making your stature so thin as you describe.

Hypermobility comes from genetic changes resulting in weak cartilage. It is highly probable (looking on amount of mood disordes in our cohort) that they also have some changes in the brain structure and in the muscles resulting in BFS combined with mood disorder. This unholy triade is very common here.

But I still would suggest endo check. Two or three neuros were TRYING to find something falling into their field of knowledge and failed. Of course they do because you do not have neurological disorder, and it is funny to blame doctors and mistrust them, because you brought for them a disorder which they just can not recognize and treat. Would you blame an oncologist who can not heal your allergic sneezing?
Our doctors are not neuros. If you would see the stoires of people who managed to live in peace with thir BFS, you can see that their doctros were psychiatrists, psychologists, sometimes endo, and - from the point of physical symptomes treatment - chioropractics, physiotherapists, moderate healthy diet and regular schedule. No one of us had neuro to propose a helaing protocol, because our disorder is not from the big neurology area.


Go figure I canceled an appointment to see an Endocrinologist after I took Lyrica and initially felt better. Yet I had 2 neuro appointments lined up, just in case.

My mother had hyperthyroid in 1982; it's in remission.

My brother, sister and I are all under-30 and skinny. My sister has hypermobility as well.
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Re: I feel like calling my neuro today...

Postby Yuliasir on August 12th, 2013, 11:38 pm

well, so probably you have inherited condition, and maybe related to thyroid. it is really worth to check, I think. I have hyperthyroid in my family (my aunt) and when she is in the acute phase... holy crap, she becomes very emotinally unstable...

you see, Lyrica had helped you probably because it is antianxiety drug (plus to its antiseizure activity). But if your issue has a root in your thyroid or adrenals, then you might be treated even more efficiently because you would be treating a cause not the symptome.

I know how devastating it is. So I wish you to see if you have more roots in your condition and more efficient treatment.

believe me, it is treatable even if you have that as a result of inherited disorder. I am a real proof and many other people here :)
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Re: I feel like calling my neuro today...

Postby Tiber2011 on August 13th, 2013, 8:52 am

Yuliasir wrote:well, so probably you have inherited condition, and maybe related to thyroid. it is really worth to check, I think. I have hyperthyroid in my family (my aunt) and when she is in the acute phase... holy crap, she becomes very emotinally unstable...

you see, Lyrica had helped you probably because it is antianxiety drug (plus to its antiseizure activity). But if your issue has a root in your thyroid or adrenals, then you might be treated even more efficiently because you would be treating a cause not the symptome.

I know how devastating it is. So I wish you to see if you have more roots in your condition and more efficient treatment.

believe me, it is treatable even if you have that as a result of inherited disorder. I am a real proof and many other people here :)


I will say, I'll take a endocrine disorder over MS or ALS. I know that sounds disrespectful, but that's how my anxious mind is thinking these days.
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Re: I feel like calling my neuro today...

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