by Ghayes420 on April 30th, 2015, 11:38 am
Well I am back and I am as excited as ever. I don't have BFS. Today, after an examination and testing that was more thorough than either visit to the Mayo Clinic, I was diagnosed as having Small Fiber Neuropathy.
I am very happy to have this dx and very excited to finally, after 3.5 years, have an explanation for my symptoms.
I am sure this next statement will cause an uprising but in the interest of adding knowledge to this forum, I will share with you that at Washington University here in St. Louis, they don't use the term BFS or benign fascicualtions, they don't feel that fasciculations are benign because they can cause distress in the patient as they have for so many here. They do use the diagnosis of CFS and they are able to confirm a CFS dx through EMG and the special NCV test known as RNS, Rapid Nerve Stimulation. Most al CFS cases with have both fascics AND cramps. Even when the RNS is negative, they will still use the CFS term when there are fascics AND cramps and no other causation is found. I don't get cramps, therefore they did not feel CFS was probable and this pointed them towards SFN.
I do twitch (have fascicualtions) constantly as well as have increasing amount of sensory symptoms. These include, pain, numbness and confirmed on the clinical, a mild loss of hot/cold sensations in my feet. Awaiting the results of the skin biopsy which they claim is not always positive in small fiber neuropathy cases. They claim about 50% of SFN is idiopathic (no known cause) about 25% is related to diabetes and 20% due to autoimmune conditions. The remaining 5% is due to amylodosis and alcoholism.
I was prescribed Vitamin B1 (thiamine) and start that in case the SFN is related to alcohol although they said there was no true way to confirm that.
Due to my timeframe, ALS wasn't even really on their radar. I had a positive Hoffmann reflex again and brisk reflexes all over but symmetric. We discussed ALS and never have they seen a case go this time frame and then weakness develop. They did elaborate on cases in which fascics are the presenting sx, of course admitting that it is extremely rare. In those cases, fascics are very violent and all over upper body mostly, weakness will show itself in 3-9 months. One time they saw it up to a year. Never longer in their experience.
No follow-up was required.
I can't say enough good things about Washington University or Dr. Al-Lozi, truly a professional with great bedside manners. I am glad that I can close the book on my sx and finally have a diagnosis I am comfortable with.
A very proud fasciculator since 8/14/2011.
