New one, could this be BFS?

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New one, could this be BFS?

Postby Floydian on August 29th, 2012, 7:09 am

Hi there, I am a 38 year old male with a variety of symptoms which started in March, this year. It started with a 24/7 continuously burning, sore, nauseating feeling in both arms, numbness and heavy feeling in both arms, cramp, some sense of loss of strength (perceived weakness?), some things felt very heavy, earbuzzing, dry mouth in the morning, often very cold and hot hands, tingling arms and hands, widespread twitching (not all day long), poor sleeping as a result of anxiety and stress and almost every night 'sleeping/dead' arms, especially my left arm.

As time passes my situation improved somewhat but still some symptoms are present. I still have tingling hands/arms, especially when I walk or cycle. Sometimes I have the feeling a splinter is present in my fingertops and pain when stretching/bending my arms/wrists/fingers.
Also with walking my leg(s) sometimes feel heavy. It feels like my muscles are weak but I do not think they are really weakened. I still can walk, cycle, run, drive my car etc...
Twitching is also present, especially in my calfs and occasionaly in other parts like arms, shoulder, eyelid. But since today I have a very deep hotspot twitch present at my right arm (elbow) which scares the hell out of me.

GPs and fystiotherapist suspected a neck hernia at first but the neck/shoulder MRI has shown that this is not the case, but they saw a nerve compression in my neck. All blood tests, a CWK X-ray and brain MRI were okay. Furthermore, I visited the neurologist who tested my reflexes and strength. This was all just fine to her and she found me too healthy for a follow up check so no EMG was made.
In the meantime I have visited a fysiotherapist, an acupuncturist and an orthomanual doctor. I think their treatments had a positive influence but all of them cannot tell me what is wrong with me.

With the help of dr. Google I was scared it could be ALS but I think that within 5 months the situation should be a lot worse. But sometimes, especially today with the twitch hotspot, that fear runs into me again. Therefore I want to ask on this forum whether these symptoms may correspond to a bfs diagnosis.

Thank you so much for your reply and attention,
Floydian
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Re: New one, could this be BFS?

Postby johnnythejet on August 29th, 2012, 7:36 am

Sounds very much like BFS. Certainly does NOT sound like ALS.
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Re: New one, could this be BFS?

Postby bobajojo on August 29th, 2012, 7:39 am

I agree. I also have continous twitching in both elbows since early June (along with several other hotspots like eyelids, calves, under my thigh, tongue, etc). Frustrating I know. -Matt
Over 10 billion twitches since May 2011.
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Re: New one, could this be BFS?

Postby Floydian on August 29th, 2012, 8:45 am

Does a burning pain and tintling and other sensory issues steer away from ALS.
I read some ALS stories where pain is absolutely present but then in a later stage of the disease as a reaction of other disfunctional behaviour and not as an early primary symptom. Is that correct?
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Re: New one, could this be BFS?

Postby Yuliasir on August 29th, 2012, 9:35 am

as far as I can judge form our local ALS boards, none of ALS viticmes had complained for pains before they get deep in weakness and had been diagnosed. Weakness comes first, clear, deep and irreversible, not pain.
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Re: New one, could this be BFS?

Postby johnnythejet on August 29th, 2012, 10:14 am

Correct, pain is not a presenting symptom of ALS. ALS victims typically feel completely normal (no pain or odd sensations).
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Re: New one, could this be BFS?

Postby skonen on August 29th, 2012, 4:24 pm

Nearly all the ALS patients who report pain exhibit significant weakness, and the pain is caused by overuse of severely weakened muscles. The tingling in your hands and feet and your admittance of pre-existing stress and anxiety largely points to a benign condition. I don't think you have anything to worry about. In fact worrying iprobably indirectly or directly led to these symptoms in the first place :)
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Re: New one, could this be BFS?

Postby Floydian on August 30th, 2012, 6:35 am

Thanks for all your replies, Till yesterday I was not so familiar with bfs but heard from someone that my symptoms partially match bfs. Because my complaints are mainly present in both my arms, combined with the sudden strong twitching in my arm the fear of ALS keeps bugging my mind. I know that stress and anxiety do not help me to recover so I must and will work on that. But related to bfs, is it common with bfs that my arms and hands feel very stiff when I walk or cycle? And also my arms/neck/shoulder feel extremely tired whole day long, is that common too ? Thanks again for all your support and help.
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Re: New one, could this be BFS?

Postby Floydian on August 30th, 2012, 8:42 am

In addition to my first post I read some stories on this forum regarding vaccins.
I had two rabies vaccins in october last year. Could that be a possible cause of bfs? and can it present itself after a few months?
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Re: New one, could this be BFS?

Postby Yuliasir on August 30th, 2012, 12:54 pm

Rabies vaccine can cause neuropathy, but rather in case you
a) had taken alcohol during 6 month or year after the shot (depends on the number of shots)
b) were taking hot baths during certain period after the shot
c) have had excessive physical or pshychological stresses after vaccination

usually people getting R-shots are warned well about those rules - exactly in order to prevent neuropaty development.
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Re: New one, could this be BFS?

Postby Floydian on August 31st, 2012, 2:05 am

a) had taken alcohol during 6 month or year after the shot (depends on the number of shots)
I had two shots and occasionally I drink a beer or wine, also in this period.
b) were taking hot baths during certain period after the shot
I do take hot baths approx. twice per month.
c) have had excessive physical or pshychological stresses after vaccination
No excessive physical or pschycological stress

I was not warned about these rules.

Do you also experience extreme fatigue in the limbs, is that common with bfs?
I can't do the "everyday-things" anymore that I used to do. For example, i love to play music but I can play one or two songs and then my arms become extremely tired and stiff. It's difficult to deal with but I'll have to try to enjoy life to the fullest.
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Re: New one, could this be BFS?

Postby Yuliasir on August 31st, 2012, 5:09 am

Sad that nobody told you that R-shot require some certain rules to be adhered... however it might also depend on the type of vaccine, who knows... I know about those rules from vets who are practically vaccinated agains rabies due to their professional risks.

In my inital BFS period there were days when it was a pain in my arm even because of talking by phone and holding it. I found that B group vitamines improved my conditions significantly.
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Re: New one, could this be BFS?

Postby Floydian on September 2nd, 2012, 5:43 am

I had exactly the same issues when holding e.g. a phone or an iron or any kind of other stuff.
My forearms and elbows began to cramp with a lot of aches. It is better now but still can't hold stuff for a long time.
It is not funny at all but I am glad i CAN hold it in the first place.
Should I make another appointment with the neuro or can you tell referring to my symptoms that I have bfs?
Thanks again and i hope that i can help other people as well on this forum.
Floydian
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Re: New one, could this be BFS?

Postby Yuliasir on September 2nd, 2012, 8:04 am

I think you might need another visit probably only to rule out any residual neuropathy, which doctor only can do on the basis of exams and maybe EMG. That is because BFS has no specific cure (only symptomatic treatment) and ususally subsides with proper day schedule and some minor treatment, while neuropathy (if there is a case) might need more specific treatment and attention.

After my own BFS had started, I managed to remember that I probably was always a bit weaker than the rest of the childern and teenagers of my age and had a pain in the muscles of my arms even during morning tooth brushing - but at those times I never considered that as anything important or abnormal, so I leaved till 41 perfectly well with that syndrome (just without fascics)...
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Re: New one, could this be BFS?

Postby Floydian on September 3rd, 2012, 3:32 am

Maybe a stupid question, but could a (double) rib fracture cause bfs?
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Re: New one, could this be BFS?

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