Experiencing BFS Symptoms Over 11 Years

[BubbleHipy]

Hello!I am new to the diagnosis of BFS, however, not new to the many symptoms. To give you my background info., my first symptoms of twitching in my legs happened over 11 years ago. It went from twitching to pins and needles and waking in the middle of the night like my hands/arms were completely dead. I then began having the buzzing and zapping...I always thought it felt like an electrical current ran quickly through my leg, arm, etc. and creepy crawly feelings on my skin. At that time, I was convinced I had MS. My symptoms came and went over the years (sometimes adding symptoms along the way), and I saw 3 neurologists. I couldn't get it out of my head that something was majorly wrong even though 3 MRI's, 1 spinal tap, and tons of blood work always came back normal. I always felt like the doctors thought I was "crazy" even thought I knew my body, and I knew what I was feeling was not normal! In the past couple months, my symptoms came back with a vengeance. The twitching was everywhere....the scariest was when it happened to my throat (it felt like what I've read others describe as a "lump" even though I could eat and drink just fine). The other thing was that I was feeling a lot of pain in my legs, especially when I got over tired. I used to run all the time but didn't feel like walking up the stairs let alone going for a run. I decided to turn to google and typed in "twitching." That's when I thought I'd discovered my death sentence...ALS. I went into a complete depression. I am 36 years old and a mother to three young girls. My husband watched as I spent countless nights crying and was planning my girls' lives without me. I've never felt so scared, helpless, and alone in my entire life. I was convinced that I had it, and nothing anyone said made me think otherwise. I scheduled another visit to my neuro who reluctantly agreed to do an EMG....he was confident I didn't have ALS based on my neuro exam and my 11+ year symptoms. He said it was probably "benign" but never gave it a name (BFS) so I felt it was his way of thinking I was making it up.We scheduled the EMG, but while I was waiting for the appt., I continued my online research. That's when I stumbled upon this forum. To say it saved my life and sanity is an understatement. To see that there were so many others who mirrored the EXACT symptoms as mine lifted a huge weight off my shoulders. I felt more positive and instantly had hope. Well, this morning was my EMG, and it was completely normal. He then brought up BFS and how his good friend has had it for 20 years! He told me to leave his office, live my life to the fullest, and come back if symptoms were ever bad enough where I felt meds were necessary to treat certain ones. As I sit here typing this, I can feel twitches and my feet buzzing, but I can now put the worst out of my head, be the best wife and mom I can be, and go back to being a happy, whole person again!I can't thank so many of you enough. I've spent countless hours reading post after post! I've never related to anyone or anything this much in my life. I can honestly say this site has been a Godsend to me, and I will continue to follow, read, and relate as we all live with this together!!!!

 

[SecretAgent007]

Welcome aboard! You may find that it is easier said than done to get your fears out of your mind, but persistence pays off. If it's one thing the many diverse members on this forum can agree to it is that the sooner you get over your health anxiety, the better you feel overall and the less severe your symptoms will be. Actively work at that first and pursue other details after you've mastered it.

 

[BubbleHipy]

Thank you so much! I do agree that persistence pays off....after almost 12 years of this "mystery" illness, I had to be an advocate for my own health and body and do my own research and push doctors for tests/answers! And also agree that the more stress, the worse the symptoms get. This was the worst I've ever felt, and my stress level was higher than it's ever been in my life! Here's hoping for a new beginning now that I have an answer, and that I can let my anxiety subside in order to feel better!

 

[RedFalcon]

Tripsmom, I just joined, too. I have all your symptoms. The vibrations and zaps scare me. I am having the hardest time moving past MS and ALS, but I've seen 4 neurologists. Two are MS specialists at university hospitals. One works with ALS patients. Had 3-part back MRI, brain MRI and 2 EMGs. I almost want to beg for a spinal tap. I've done an incredibly high amount of bloodwork. All came back normal. Two neuros both said BFS. In May and June, I didn't want to leave my parents' house. I've always had depression and anxiety, but I'd sit at home, monitoring myself, checking to see what worked. I wish I hadn't done that.

 

[SecretAgent007]

Some people on here have a harder time letting go of their fears and worries than others. People have symptoms characteristic of BFS but because this is not normal compared to how they felt prior to BFS, they start worrying and turning over every little stone looking for answers. They go to doctor's visit after doctor's visit, have multiple EMG's, MRI's, and many other tests. They convince themselves they are looking for verification that they don't have something sinister, but when they do get the 'all clear' from their doc they go right back to worrying and looking as though they are actually looking for bad news. Eventually most people realize the futility in this exercise and finally give up on looking for bad news and low and behold they start feeling better.

 

[BubbleHipy]

Thank you for taking the time to comment RedFalcon and Bond007! RedFalcon-I am not a doctor but after seeing 4 neurologists (2 MS specialists), I wouldn't see the need for a spinal tap. Trust me....they are NO FUN, and I doubt it will give you any other answer besides what you already know (BFS). Bond007-I was definitely one of those who went from doctor to doctor searching for answers. If any of the doctors or neurologists would have mentioned BFS I feel I could have accepted the diagnosis and started living my life instead of fearing the end of it. It started with the obsession of it being MS, and even after 3 MRI's, blood work, the spinal tap and EMG, I couldn't move on as they just sent me on my way saying they didn't have answer for me. I felt "crazy" like no one believed how I knew my body was feeling. After about 5 good years of being fairly symptom free, I had a relapse so to speak and have had a horrible couple of months. I then googled my way to believing it was ALS and had another neuro exam and EMG. If I would have found this site or heard about BFS sooner I feel I would not have panicked and caused my body an overload of stress....which I now understand amplifies symptoms. As I read through post after post, I can relate 100% with this diagnosis and other people's experiences. I will wholeheartedly take your advice and focus on getting over my health anxiety to improve my quality of life. I promised my hubby that after this last neuro visit and normal EMG I would stop obsessing over it being a deadly illness and start focusing on the happy, upbeat person that I had always been! From this point forward I will stop "chasing" a diagnosis as I now honestly feel that I have found it!Again, thanks for the comments! It helps to know that there are other people out there who can give advice and relate!