Neuro dismissed me. Trying to assume BFS but scared. Help.

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Neuro dismissed me. Trying to assume BFS but scared. Help.

Postby sjt on April 23rd, 2008, 1:29 am

Hi everyone,

Thank you in advance for any help/insight you can offer! As I said, my neuro dismissed me. I am trying to self-diagnose and in the meantime am scared and feeling very pessimistic/hopeless. My symptoms have been going on for quite a while, sorry for the long post:

Early Dec. 2007: Buzzing in both feet started suddenly around the time of a TENS treatment in P/T. Couple days later woke up to severe neck pain, which continues to come and go. (A couple months earlier I had been dx w/ a muscle spasm in my neck but that was my first issue w/ neck pain and it had resolved). Several days later had an episode of dozens of burning pinpricks throughout my lower body. Lasted about 10 seconds. That night awoke to pins and needles feeling in my legs. Saw my primary doc who did bloodwork and ordered lumbar MRI, both normal. Buzzing in feet got much worse.

Mid Dec. 2007: Started experiencing burning pain under my skin..mostly across my shoulders/back and in the backs of my thighs. Nerve pain? Some days buzzing decreased and then it would suddenly increase again (as in, sitting on the couch and suddenly feel the buzzing ramp up to its worst).

Late Dec. 2007: Started having episodes of dizziness and weakness along w/ other symptoms. Felt like I had the flu. Limbs felt weak/shaky after minimal effort (walking up the stairs, blowdrying my hair). Started having full body shock-like jerks when resting or trying to get to sleep. Mostly full body and in my legs (both legs would jerk back at the same time) but also in my hands, feet, neck, back, trunk, shoulder, etc. The jerks would cause a tingling sensation (panic or fight or flight feeling). Hubby said I was jerking in my sleep. I started to feel severe anxiety at this point as my primary doc was blowing me off. I admit I was extremely stressed at this point, convinced something was seriously wrong with me.

Jan. 3, 2008: Appt w/ neurologist. Finally. Not a morsel of bedside manner, just did a 10 min clinical exam, asked me some questions about what I do and ordered an EMG. Asked him about MS and he said "100% certainty it is not MS". After some prodding he said my symptoms are typical w/ anxiety. Granted, I was anxious at that point because of my symptoms but in my 38 years of life I have never had any issues w/ anxiety, depression, etc. And my symptoms started overnight. While it seemed absurd I did consider the fact that about 6wks before all this started I did experience a rather traumatic event (evacuation and potential loss of house in CA wildfires). Maybe it WAS lingering stress??

EMG/nerve conduction tests both normal. At follow-up appt neuro dismissed me and told me to "figure out why you are unhappy and do something about it". Said my jerking was benign and would probably go away once I stopped worrying about it.

So here I am a couple of months later. In the meantime I have tried to assume it is a benign condition...stopped reading about all the scary stuff and started taking magnesium supplements. And I do feel a little better than I did in Dec. The jerking has decreased significantly thankfully so I am sleeping. The buzzing in my feet continues 24/7..some days a background and other days so bad I can barely concentrate on anything else. Still experience the muscle burning (especially when sitting at the computer, like now), still have neck pain, internal tremor, arms/legs shaky and weak most of the time which is most troubling now. I have stamina and not overly fatigued...but any simple effort (like windexing a table) makes my arm ache and tremble.

But I still have this nagging thought in the back of my mind that something is wrong. On the one hand I'm trying to get on with my life but on the other hand I'm afraid I'm ignoring a big problem that requires treatment. Yesterday I tried to squeeze a clothespin with my left hand and it started shaking so bad from the effort. I could barely hold it open. Right hand is fine. New symptom, new fear.

How can I be fine for 38 yrs and then wake up one day a buzzing, trembling, jerking mess? And...anxiety?? Shouldn't there be some history of this before you make this assumption? Should I see another primary doc/neuro for more testing or does this sound like classic BFS?

I am really scared about my future and just can't believe how my life changed so dramatically overnight (literally).

Thank you all for reading this novel and I'm feeling hopeful now that I have posted.
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Neuro dismissed me. Trying to assume BFS but scared. Help.



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