Neuritis & New Symptoms: Update

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GHayes420

Well-known member
Well back to my home away from home, the neurologist's office. Before you start rolling your eyes at my 12th appointment in 3.5 years, there have been some changes to my symptom profile since my visit to the Mayo Clinic back in January. So I have a few reasons to seek counsel:1.) I now have diagnosed neuritis in my sural nerve on my right foot that is not healing quickly or barely at all. 2.) The pain and numbness is now extending to my left foot as well all the way up to the back of my knee. 3.) There is also nerve pain and numbness occurring at the end of the nerve paths in both hands as well with intermittent numbness in the ends of both thumbs. This is referred to commonly as the 'sock and glove' presentation of neuropathy. 4.) I have since relocated to the Midwest and wanted to establish a neurological contact in the area in which I now live, my GP was happy to refer me after I told him my story and showed him my fascics in my eyes, neck and arms. 5.) I wanted to visit a specific doctor, Muhammad Al-Lozi located at Washington University here in St. Louis. He is very well known in the community of neuromuscular disorders and has seen several people on this forum over the years. (expanding my knowledge base to include yet another Top 10 expert)So now that you have my excuses, I am looking forward to see his opinion of what exactly is attacking my sensory nervous system and why just now after almost 3.5 years of continuous fasciculations. Curious if they are related. The pain in my wrist I was also hoping he could confirm is from a ganglion cyst that is very obvious by my observation. I am not going into this appointment with much concern over ALS/CTE or MND but I do have my moments. I am more concerned of the new symptoms, the possibility of small fiber neuropathy or alcoholic polyneuropathy. As well as if he feels that a follow-up is required, which would not really be good for my psyche per say. Preparing for the clinical exam to be spotless minus my brisk leg reflexes which have come and gone over the years. I will keep you updated after the appointment in the morning tomorrow. Glad to have this group to share the knowledge with. -Greg
 
Well I am glad at least that you have an explanation of your feet/lower body complaints! Did he propose any treatment for that (cortisone, gabapentine)?What did this neuro say about the ganglion cyst and about the sensations/neuropathy in both of your hands?
 
Ganglion cysts not uncommon around here (search if you haven't), didn't Matt babajo have one also? I think I've got them on both sides. New with bfs.
 
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.
 
I'm so happy that you have a diagnosis, Greg.Are fascics part of SFN? There are many times that I have wondered if I have it. But, pain and sensory symptoms are definitely secondary to my twitching.I have cramps but few and far between, and I have had the same foot cramps since I was a child. I'm guessing I wouldn't be in the CFS category?Anyway, this is an interesting post and thanks for letting us know! I hope that their treatment works for you. Do you have to abstain from alcohol completely?Mitra
 
Thanks Mitra. To say I am elated would be a disservice to the word. Yes, twitching very much is related to SFN And no, I don't have to abstain completely from alcohol he was fine with a drastic reduction and just sticking to beer and wine. ( Thank God)
 
I'm just wondering how much drinking can cause SFN? I have on average 7 drinks a week, most of that number during the weekend :) I think that puts me in the moderate/heavy drinker category (I read that somewhere and was shocked because I didn't think that 7 was much and my doctors have never said anything - but it was 7 for women, and 15 for men to categorize them as "heavy drinkers"). I know I have a B12 deficiency. And I have the genetic MTHFR defect that makes me unable to process folic acid and convert it to folate (which also includes issues with B12).This is all interesting to me... and really makes me wonder if I have the same thing. My more sensory symptoms include pains that feel bee stings, which are ridiculously painful when they occur. Thankfully I don't have that all the time like I do with twitching. I've also had random numbness, etc. Maybe I'll go get this all checked out at some point, if I ever get the stomach to visit a neurologist again (serious PTSD for me - from my visit 3.5 years ago).Yay! Hopefully you can start healing now!!!!Big hug to you my friend.Mitra
 
We're playing with words here, but since nobody really knows what BFS is, I wonder if SFN can fall under the overall umbrella of BFS. I know St Louis doesn't use the term, but we do, and it's really any condition involving fasciculations that are physiologically benign. Sounds like your condition (SFN) would fall under the BFS umbrella. I guess it's just my way of making sure you don't leave us now that you have a diagnosis :)
 
Hi nickson. Don't worry, I won't bail. But fortunately it's not just a play on words. SFN is a diagnosable condition that doesn't fall under any BFS umbrella. It is diagnosed through clinical exam (sensory findings of hot/cold), QSART test, and skin biopsy.There are multiple causes of SFN, finding the cause is always the tough part. However I just am now leaving Wash U. I just had the QSART test done and he confirmed the results were abnormal. My foot did not produce the sweat response. He said this further confirms his suspicion of SFN and now they will wait for the results of the biopsy which will take 3-4 weeks to return. Again not bailing on this site, but surely not BFS at this point.
 
I think this is indication bfs is getting more info/science behind it as Buzznerd found that study with bfs/bfcs and most who also had SFN. Mitra, same here, bee stings and random numbness, limbs falling asleep, all kinds of weird things - like a haunted house I am really.
 
Hello Buzznerd,Your research is always well balanced and informative. However have PM you directly concerning an issue. Problem is I am not sure if it went through. Seems to be sitting in my outbox. Not sure if the PM service has a glitch as it had before. If you dont get anything please try to PM me back.Hx
 
"My academic researcher/doc told me twitching is not a feature of pure SFN but is seen very occasionally, this was doubled by scboy's hopkins feedback. "Make that triple confirmed by the head of neurology at Wash U: "Fasciculations are not a primary finding in SFN traditionally, but we seem to see more and more cases of SFN that have fasciculations in the symptom profile."
 
I'm here to tell you that (following skin biopsies in my left leg) that I was dx'd with SFN at all three sample sites ...the upper calf, the lower thigh above knee and mid thigh. I found that mine was a result of glucose (not gluten) intolerance that I've probably had for some time. I researched SFN and found that in many cases it also involves the larger fibers (including autonomic and motor). I've also been told that I have EBV, Fibromyalgia and bony protrubances / foraminal narrowing C5-6 if memory serves. All symptoms (twitching, burning, muscle fatigue, diminished reflexes (slightly) and (to my eyes) a negligible loss of muscle bulk, all on the left side). The twitches / fascics and fatigue began 18.5 years ago, and I've had previous bloodwork over the years with normal glucose, but the newer symptoms may very well be related to glucose levels (which accompanied a very high stress, sedentary job where it's always a pot luck or birthday party with never ending cake and snacks-- thank God I now work from home). I have a slightly weaker left foot which appears to have a circular indentation on the inside below ankle bone, yet I still walk fine, can stand on toes, and have no clinical deficits (no babinski). I'm getting older and have probably always had a weaker left foot/leg, but like most of us I'm hyper vigilant, so a mole hill becomes Mt Everest. I try to keep anxiety under control, and feel that I have a constellation of symptoms from different sources (SFN, anxiety, cervical damage, scoliosis, fibromyalgia, etc). I may never get definitive answers, but I'm tired of searching. For some of us, this may be a lifelong situation, and if you've gone years without obvious, debilitating progression, you could very well have multiple causes. Wish I'd known about the SFN / glucose situation sooner though. Be blessed :)
 
My neuropathy is always mentioned as motor neuropathy. I do have very bad pins and needles in both arms and both lower legs, Chronic nerve pain in both lower legs. Deep tendon reflexes are absent on both legs at knee and ankle. All put down to as chronic denervation and a neurogenic process....i suppose that is a way of saying we really dont know what the f'ck is happening.In the centuries since these neurological diseases were named i sometimes wonder what strides the field of neurology has actually made, if any. :confused:
 
I have SFN as well (diagnosed about 4 years ago through skin biopsies of the leg). I'm not diabetic, nor do I drink, but I failed a glucose tolerance test -- badly. I also have a history of CFS/Fibromyalgia and I do feel weakness, especially on the left side. With 20 years of twitching. 4 years of documented SFN and 3-4 years of limb fatigue, I'm just tired of the whole symptom complex. I've never had an EMG (last visit to neuro was 4 years ago and he refused to order one). I have some muscle loss left calf and foot, but can still walk on my top toes, heels, and all the other stupid self-tests I put myself through. All I know is this: I'm *beep* grateful that I awake each morning able to move all my parts. Glad you finally got some answers and hope you'll stay in touch.
 

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