RLS or BFS: Questioning Diagnosis

[alyLeoNCali]

Hi,

I was initially diagnosed as having Restless Leg Syndrome by a Dr. here in Japan where I'm currently living. His diagnosis seemed to be more of a guess actually, after having eliminated other possibilities. He hadn't heard of BFS (which I found out about on the internet).

I have symptoms very similar to those typically described as Restless Leg Syndrome but do not experience any compulsion to move my legs. I realize that this, in itself, likely disqualifies me as having RLS. I've had the typical tests for weakness, dexterity , reflexes, a CAT scan, MRI, EEG, and blood test for thyroid related issues -- all indicating no serious neurological disorders. My tremors and occasional "bizarre sensations" occur when at rest, particularly at night and in the morning upon awaking (often earlier than I'd like to awaken). The rather high frequency "buzzing-like" tremors began in my back, progressed to my legs over a period of several months, and are now usually all over my body -- particularly in my legs, shoulders and upper arms. They often have a patterned rhythm of increase and subsiding that occurs in intervals of a few seconds -- feels like a motor starting up and winding down.

The Dr. here in Japan has prescribed Clounzepam which is effective in eliminating the tremors and allowing me to fall asleep (I gather that it's a catch-all general perscripton for tremors). I currently take only a 0.5 mg tablet, but have been instructed to take an additional dose in the morning when the condition returns (which I haven't done thus far -- I hate the idea of taking "serious" medicine).

I also have been taking vitamin B-12 supplements, Iron, Calcium and Magnesium as many sites have recommended -- with no obvious effect.

My questions are; first, Are the tests (listed above) that I've been given satisfactory to definitely rule out ALS, MS, Parkinson's, and other serious neurological conditions (or, does one require a spinal tap to truly verify such a condition)?

Also, because I don't have the compulsion to move my legs that is a part of RLS, does that then indicate BFS as the only other likely option? From what I've gathered in scouring the internet, the symptoms of BFS and RLS are virtually identical, the only exception being the compulsion to move one's legs in RLS. Are these conditions just variants of the same general malady?

Thanks to anyone who can clear up these concerns -- I'm rather new to this.

 

[michellekh]

Hey MC:

I wonder if Restless Leg Syndrome and BFS are closely related. I can't answer your question. But I did want to let you know that the symptoms you describe sound very, very much like BFS - especially that you have symptoms that aren't limited to your legs. I also have the buzzing sensations you describe, mostly while in bed.

I used to think RLS was the same thing as BFS only a less severe case, but like you, I don't have an overwhelming need to move my leg for relief.

--alyLeoNCali

 

[alyLeoNCali]

It's terrible, I suppose, to realize that misery at least shares company, but it’s always somewhat comforting to know one is not the only one with this weird ailment.

Thanks for helping me add some pieces to the puzzle. I hope we all have less "company" in our "benign" misery.

 

[SandyDWPTBones]

I have had a very similar experience. I had seen a neuro for strange sensations I had been having in my arms and legs. It started with a tight feeling in my arm with almost a numbness in my fingers. Then my legs started with tingling and strange feelings, followed by vibrating and "motor running" feelings as well. After an MRI and an EMG, the neuro said he feels it is Restless Leg Syndrome. I went to the internet and found so many of the symptoms that I have listed by people who have RLS, the tingling, motor running feelings, the vibrating, feeling of electricity running through your veins, creepy-crawly feelings. Except for one major thing - I don't feel the need to move my legs. I started with muscle twitches after a couple of months. After finding this wonderful site, I asked the doctor about BFS and it sounded like he never heard of it. He said he still feels that I have RLS. Personally, this is the one and only place where I have seen all of my symptoms listed and shared by others. I don't think it's RLS in my case, but I wouldn't be surprised if they are two different versions of the same thing.

 

[happyzluckyzblessedz]

I think we're ultimately "on our own" on this issue. My own doctor here in Japan had never heard of BFS. Also, a doctor on one RLS website was pretty adamant in concluding that, "If one does not feel the compulsion to move their legs, it isn't RLS."

After scouring web sites and reading other's opinions and symptoms, I'm pretty convinced that BFS is, indeed, what many of us are experiencing.

I've also definitely noticed a correlation between the intensity of the symptoms and stress and anxiety.

Thus far the best information and advice I've gotten has been on this website.

I don't know about other's personal appraisals, but I'm seriously relieved to find that I likely have a "benign" malady. Even though it can last years and is extremely annoying, I "feel better already."

As an aside that may seem somewhat weird to others, I'm an astrologer. My own encounter with this illness is occurring alongside something we call, "transiting Uranus aspecting Mercury." Unscientific as all that sounds, the symbolism -- among other things -- is a sort of "amping-up" of the nervous system. The "transit" also happens to last about a year and a half. Just a thought.

-- Cliff