BFS-Related Pain and Weakness

[DesertKnight]

So, if you've followed my story at all you know that my biggest complaint after the initial "freak out" phase of BFS has been pain. Pain and sensory issues like a groin that tingles and is numb 24/7 and the back of my calf that has about half the sensation of the left. The latest addition to the party that is my body has been weakness in my right foot and ankle. Believe me when I say the weakness brought on a whole new wave of anxiety and questioning of the benign nature of BFS. A good friend and physician urged me to pursue other avenues as the reasons for at least some of my problems, especially seeing as the pain has been around much longer than the twitching. During this search I found an interesting finding on my MRI from March of last year. It was a large cyst located in my sacral canal, half of it on my S2 and the other half on my S3. It was only after persistence I believed I had found at least a partial answer to my pain issues. I should add this disclaimer: I do have health anxiety, terrible at times. I've never been anxious or obsessed with this cyst, in fact it took me months to actually contact the physician in the US who is an expert in this particular type of cyst. I second guessed myself, put it off, tried blaming it on everything BUT this...but in the end it was undeniable that I had every single symptom of this disorder. (And, I didn't have to imagine or freak out to have the symptom!)This is the link to the information about my big friend in my tailbone. I may very well be the only person here who has this, and odds are I'm the only one who has a large, symptomatic cyst. I say this only because I feel we have a tendency to find one diagnosis and blame it for everything, which certainly may be the case but not always. I knew my pain was above and beyond a reasonable expectation and I'm thankful I didn't just ignore it and blame it all on BFS.I also wanted to share this to demonstrate there are many, many reasons for pain, weakness, cramping, and sensory issues in our limbs. The specialist I saw Wednesday told me that 99%+ of the weakness he sees in his patients is caused by nerve entrapment and/or injury to nerves. When I told him of my old fears of MND, he said he understands the panic due to the brutal nature of ALS, but that those diseases are extreme fringe diagnosis. If like me you have pain, tightness, numbness, tingling, shocks, hot and cold sensations, buzzing, and even weakness please don't start writing your own obituary. All those things can be caused by BFS. Maybe like me you have something else going on in addition to BFS. But what you DON'T have is ALS. Frances

 

[BlueMan]

Agreed, and well said. BFS is neither an omnipotent explanation nor a garbage-bag diagnosis. It certainly explains much of what you and others have gone through, but it doesn't explain other things. Also, I find it interesting that many neurologists give a BFS diagnosis without adequate investigation of metabolic or hormonal disorders.As for cysts, welcome to the club. You're not alone. I have a pea-sized cyst at L5/S1 (the MRI was w/o contrast and the radiologist, neurologist, and neurosurgeon aren't sure what kind it is), which may explain some of the leg symptoms I have. I'm supposed to be alert for signs/symptoms of cauda equina syndrome, but for now am not a surgical candidate. Further, I have Hashimoto's thyroiditis, vitamin D and B12 deficiencies, probable celiac disease, and suspected autoimmune thrombocytopenia (fortunately my platelet level is still above the danger zone).P.S.: I have never been officially diagnosed with BFS. I'm "more complicated than that," say my docs.

 

[DesertKnight]

I don't have the "official" diagnosis either. Friday is the day for my yearly blood work, and my doc is adding a few more tests to check for vitamin and mineral deficiencies as well as hormonal issues. We shall see what that shows, though it won't surprise me at all if its all normal.I've now had two neurologists/neurosurgeons tell me that my twitching more resembles nerve injury or entrapment than anything else. Seeing as I am curved, from my C spine to my sacrum with lots of bulging and degenerative discs all the way through...I don't doubt it. For instance, I sneezed the day before yesterday and pinched a nerve in my neck. Now my arm that never ever twitches is twitching along with lovely burning and pins and needles. Having said that, if my back was miraculously straightened, my cyst removed and I still twitched...I'd still be okay with it. If I find out along the way what causes it, that would be great. But the fact is I may be like this for the rest of my life, and that's okay with me too.Frances