New to Forum: Diagnosed BFS

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TheNerdPanda2012

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Hello, I am new to this forum. I have been given the diagnosis of BFS about 2 months ago, but have been suffering from symptoms for the past 6-7 months. I wanted to post my story on here to see if anyone has had any similarities to me. I will present it in a time line format, hopefully to give a clear picture of what I have been going through.Before January 2013 I was in good health. I cam down with what seemed like a " flu like" virus, and then about 3 weeks later started having heart palpitations. I ended up wearing two event monitors, which showed I was having extra beats ( PVC's and PAC's), along with mixed tachycardia and bradycardia. I also had a stress test and ECHO completed, which were both normal. I was given the diagnosis of Postural Orthostatic Tachycardia and sent on my way with a prescription for metorpolol. After about 6 -7 months the palpitations stopped, and I only feel them occasionally now.June 2013: My right leg started having heavy vibrations in it, and while walking the the grocery store it felt like jellow, like it was going to collapse. Of course, I panicked, and called my doc immediately. Her concern was MS presentation, so I started a medrol dose pack until I could see a Neurologist. I saw a neurologist a couple days later, and completed a MRI of brain and C spine, along with a NCS/EMG on my right arm and leg in July 2013. All results were negative, no issues at all. Starting in July 2013 I started getting the twitching. Majority of it happens on my right side, but it can happen anywhere on my body. I also had a month of paresthesias and feeling of tightness in my face, that made me feel really foggy headed. Those were the worst, I'm glad those calmed down. But since then the twitching has been unbearable.I was sent the a rhuematologist in Sept 2013, and that is who confirmed I have BFS, and that it is nothing auto-immune.So, here I am now. The twitching is all over my right arm and leg, sometimes other parts of my body. The worst part is the muscle spams and cramping. I wanted to know if anyone has had a similar situation to me with the muscles spasms. They occur and can last for days, and then resolve on their own. I can have a bicep spasm, it it feels tight and swollen in the muscle, and if you press hard you can feel little fasciculations. The spasms only happen on the right side of my body. It causes my hand to feel weak at times, like I have decreased dexterity because the other muscles in my arm are spasming. My leg will also have days where I feel as if it is hard to flex my foot upward, or walking seems like a task. It constantly feels as if the muscles in my right hand are swollen. Does anyone ever notice that there muscles will become swollen for days with spasms?I recently started training at the gym with a personal trainer, and I have noticed an increase in the spasms. I am not sure if this is exercise intolerance, but my right side is definately a lot weaker when lifting weights, and constantly has some sort of spam.The newest onset I have ( not sure if related to BFS) is a rash all over my body. Yesterday, out of nowhere I started developing red tiny bumps all over my face. They spread to my chest and back, like an allergic reaction. I tried antihistamines without relief, not sure what is causing the rash. I am going to my neurologist and GP today for follow up.
 
Hi,I do not know if I can give you DETAILED report about how crapms are affectiing me, for example, but I would like to say they are very common part of BFS. Previous fall was a kind of cramping session in my life and I spent several weeks really in fear of something bad until I realized it still was stress (I choose unusual country for vacations and had crampy ones). I also had a feeling of swollen muscle few days ago (with some cramp-like pains it it), I really had that feeling and when I measured my bicep on that swollen side it was 3 cm less in diameter than another one which is physiologically normal :)Unilateral spasms are also not uncommon. All your description looks like typical postviral case of BFS for me, and the only issue which might be really need checking is your seemingly non-allergic rush. BFS is associated with 'allergy' or rather with urticaria to say strictly which is another stress-driven reaction but it means no small bumps but rather big hives sometimes making a fields, spontaneously coming and going, often typically after contact with sweat/water and sometimes also not very treatable by antihistamines (at least not momentarily disappearing however some relief of course could be seen). But from your description I can nto judge if it is urticaria (rather not).hope this would help a bitregardsyulia
 
Thank you for your post, I think the rash I had was an allergic reaction, unrelated to BFS. I followed up with my neurologist who is reluctant to say I have BFS. She seems concerned there is a neurological process taking place, but is unsure what to name it. I am having muscle spams only occuring in my right arm and leg, that can last 1-2 days at a time. I am also having twitching, concentrated on my right side, but all over my body. My neuro wants to wait until mid January, and if I am still having symptoms repeat the brain MRI and limited EMG. I have another symptom I am concerned about. Some days for the past 2 months I can have non-stop belching. It feels as if there is little bubble trapped in my throat, and almost as if my throat is slightly closed up. I am breathing normally, and Io can swallow food with problems, but my throat feels tight, and the belching is non-stop. Also while sitting with my mouth closed I can hear gurgling inside my throat, and what feels like grapepie moving around in my throat. I assumed it was related to GERD, as I have that dx and don't always take medication like I should, but lately I am concerned it is another neurological disorder trying to show its face. Has anyone had this as a side effect of BFS?
 
Your symptoms match mine quite well. I've had the "vibrations," spasms, cramps, paresthesia in the face, twitching -- even heart palpitations. My doctor attributes a lot of my symptoms to changing hormones (I'm 46), but it sounds like a virus caused your symptoms. Be reassured that the doctors can't find anything wrong with you -- that's a good sign. Everything you're describing sounds exactly like BFS, especially the fact that your symptoms seem to continually change, as do mine. And I wouldn't be alarmed that the neuro wants to follow up with you in a few months-- that seems pretty typical around here. Oh, and the belching and throat symptoms sound anxiety-driven to me. Hope this helps and that you find relief soon. -- Michele
 
Hi,I can easily understand your doctor becasue BFS is unusual for many of them still :) and maybe becasue your symptomes are a bit concentrated (mine are concentrated on left side and generally unilateral preferernce, as I said, is nothing new in our fellows). My own neuro said: good that you come becasue some very sinister diseases may start with thwitcing (!!!!! - imagine how I may feel), and she insisted on EMG, and when I brought her my results, she looked and said, ok, keep it, maybe we need to repeat... and wanted 1 year followup, and ended up with 'benign myoclonia'. So neuros could be 'disease advocates' by nature, do not worry, they would be as much happy as you to write 'clear' on your history still.Belching is definitely a symptom of GERD, and sounds in the throat too. Esophagal and cricopharingeal spasms are very common complains among our fellows and are generally wery stronly associated with stress.
 

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