BFS Diagnosis: 8 Years & Counting

[calumetostorm]

It is not my intention to scare anyone here. Eight years ago i started twitching severly in my legs. Thinking the worse, I visited my Neurologist.
I had no mscle wasting or weakness. I had no pain, except cramping spasms. He said it was BFS and I walked away relieved. The twitching got worse the next year, so I go again. SInce no muscle wasting or weakness he again called it BFS. He never did any testing and told me to stop worrying. I did. I got use to the BFS and life went on. Years passed, I did notice that my tendons in my legs were a little tighter, but no real problem. Then three months ago the twitching moved to my upperbody, followed by intense pain. I have posted on this forum about groin pain.
I have pain in many places, arms legs, chest, buttocks, ectt. Not bad pain, but it's there. The groin pain put me in the hospital. I finally had nerve blocks to deal with the pain. I also had a EMG and NCS. Both were abnormal. The basis summary is this. ( Abnormal NCS and EMG consistant
with a chronic denervation in the lower extremities.) Am getting some more testing done to my upper and a complete CMT evaluation done.
My new Neurologist says I never had BFS, but a long going Neuropathy
that has finally showed itself. I wonder if this Neuropathy was caught years ago, would I be in better shape than I am now. If you have symptoms of BFS that last for more than six months, demand a EMG and NCS and other needed test. I do not yet know what disease I have. MS is ruled out. However, I am almost disabled due to the pain, even though I take many meds. Again, Most here I'm sure have BFS, but I would demand test to certainly rule out neuropathy.

 

[Alonzo]

armistead, a couple of things here;

1) you said you only had twitches in your legs. BFS usually starts in one place and spreads all over in random places, in both the upper and lower extremities and torso.

2) It is possible to have BFS and another neuro problem at the same time, just as it is possible to have migranes and skin cancer at the same time. Both totally unrelated but indeed there. One didn't "cause" the other. You might have had BFS and now have somethig else that is totally unrelated. That is just an idea, not a statement of fact, as I don't know your exact case one way or another... I am only suggesting scenarios that "could" be the case and to ease the minds of all of the other readers that you have probably scared the living hell out of by now...

3) ANYTHING can happen over a span of many years, whether it is related to an existing benign problem or not. This could be something like obsessing over a benign condition such as BFS for years and not noticing that you have a black / blue spot in an out of sight place on your scalp that has turned into Melanoma and is invading your system. Like I said, anything can happen over a span of many years and it might not be the "benign" condition that is the underlying root of your new problem.

Trust me, I am not belittling your symptoms or your current diagnosis. It may or may not be serious. No one will know that until you get accurately diagnosed, and hopefully you'll come back and share your knowledge with us again, so we too can learn from this. I just want you to know that what you have right now, might not be related to your old symptoms at all and that it might not be seriuos either, that is a hard one to say right now and only the real experts (the neuro's) can say for sure after they have concluded what is really going-on.

Keep in mind that there are a lot of people with no serious things going-on that have abnormal EMG's, sharp or brisk reflexes and so on, and they have had these symptoms for decades... a LOT longer than some people live with or without major diseases. We all start to die the minute we are born. Things happen when you get older. People get hunched backs, bones get brittle, muscles shrink, you lose articulation, you can't bend over anymor, we gain weight, get diabetes, our vision starts to go, we can't remember anything anymore, but that certainly doesn't mean we have bone cancer, alsheimer's, brain tumors, degenerative muscle diseases or anythuing else other than just getting old and now that I am the ripe old age of... 40, I can relate to some of this because my hair is falling out, my vision gets worse every year, my belly grows by the day, I haven't been able to bend-over and put my socks-on in a could of years, my back and whole body aches and my short term memory has been leaving me from time to time, but we ALL get this sooner or later and it doesn't mean anything bad is happening.

What I am getting at my friend is keep your chin-up We all have "things" going-on. If what you have is progressing slowly and has been taking years and years to get where it has, there are certainly a LOT more devistating things that could happen in the mean time and expidite your departure from this world other than a slow moving NMD, (IF you even have a true NMD in the first place) which probably isn't life threatening anyway. Stay positive and keep us posted, OK?

 

[Weegidy73]

hmmm, the pain/chill/hot flashes are sensory symptoms and as such could not be caused by motor neuron disease/ALS.
So that's probably why the preliminary diagnosis is neuropathy...
If I remember correctly, as oppsed to MND, there should be effective treatments avaiable for many types of neuropathy...

Have you already checked the neuropathy forum at MGH ?


Good luck and don't give up

 

[Alonzo]

Yeah, I agree with Asterix, with neuropathy, it isn't anything "really" nasty like ALS. I mean, it could be MS, but MS these days is VERY managable with the "ABC" drugs. Also, MS can be in the spinal cord, not the braion as most people think and when you really think about what MS really is, it isn't that scary. It's nothing more (in simple terms here) than plaque build-up in the nerve sheath in the spine, or in areas of the brain that press against the nerve pathways, thus disrupting and/or distorting signals passing through the nerve "wires". Kind of like phone interfearance. It may be there one day and not the next depending on conditions. MS is very much an individual disease or "condition" and is VERY subject to hydration, nutrition, and so on. It is also a VERY NON black and white disease in that it is what it is, as far as plaque or "leisions" pressing against nerves, but after that, almost everyone is a unique case with unique symptoms. The little spots can be so small, that they can't be seen on a lot of MRI's or CT scans either but the symptoms are sure there.

My own 2 cents? Hang in there buddy! I would believe your doctors in that it probably isn't anything really nasty but I'm sure the symptoms are a royal pain in the butt! We're all here for you if and when you need us for support or research or anything, OK? Hope you feel better soon!