One Year Update

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One Year Update

Postby pdodge715 on July 1st, 2013, 11:03 am

Hi all,



I have been absent from the forums for several months, due to the realization that coming back here and reading about everyone else's fears and symptoms was exacerbating my own. I wanted to make sure I popped back in to provide my 1-year update, because I know how helpful it was for me to read about the experiences of those who had BFS for some time when I was first twitching and Googling.



Symptom Update
First off, I still twitch. Like crazy, all the time, everywhere. My legs are constant - they were the first part of my body to start twitching and they remain the most severe. Calves mostly, but up through my thighs as well. I have occasional twitches in almost every other part of my body: arms, feet, chest, hands, face, lips, tongue - you name it, I'll twitch it. Sometimes, these will be quick 1-or-2 twitch episodes; but sometimes they will last for weeks. The bridge of my nose twitched for about 2 months, for instance. My facial/tongue twitching is probably the second hottest-spot after my legs. This initially brought a TON of concern about bulbar, but my twitching in that area started about 10 months ago, and I can still speak/chew/swallow, so it's definitely not that. I've noticed a definitive correlation between caffeine consumption and facial/tongue twitching, too, by the way.

I get "thumpers" occasionally. These can be anywhere, but they are BIG spasms that are much different from the usual popcorn/wormy sensations. I had one in my calf for about 4 hours that really freaked my wife out! These are few and far between, but always good for a panic attack when they pop up! The scariest one I had was in my lip and lasted for about 5 hours: you could see it pulsing from a distance, and it felt really bizarre. This was back in January, and I haven't experience it again since then.


The most worrisome/annoying thing I deal with now is a general feeling of fatigue and weakness in my lower thighs. (I have seen a couple other people refer to this as "jelly legs," and I find that term to be perfectly descriptive). It feels like I've just run a marathon, and it's been all the time for the last 6-8 weeks. It's difficult to determine if it's actually as bad as it seems, or if I'm just hyper-aware and making the symptoms worse in my mind. In fact, that's been my biggest internal conflict since my battle with BFS started last June.



What the Doctors Say

The first neuro I interacted with conducted and EMG on July 13 of last year - right about my 3-week mark since onset of symptoms. He completely lacked compassion, told me that my EMG was clean (except for the fascics), but that it could very well be too early to tell whether or not I had ALS. He gave me an exercise to watch for muscle weakness, and said if I could still do that exercise in 2 months, I could conclude I did not have ALS. Well, it's 11 1/2 months later now, and I can still do it.



My second neuro (referred to this one by my PCP in October), was VERY compassionate, had seen BFS several times before, and spoke the best sentence I have ever heard after giving me a physical exam: "I am 100% sure you do not have ALS." :D He was supposed to give me a follow-up EMG, but insisted that we cancel it because it would be a waste of time and money. He diagnosed me with BFS, but scheduled a 6-month follow-up appointment just because "he hates to be *beep*." I left that initial appointment feeling immense relief. However, after a couple weeks, my anxiety and ALS fear started back up when I went my arm shook as I squeezed a ketchup bottle (it's the dumbest things with me, really). So, I bided my time and kept my sanity by making a sort of mantra out of his words: "I am 100% sure you do not have ALS."



The 6-month follow up: This was March 10, almost 9 months into BFS and 4 days after the birth of my first child (we found out my wife was pregnant about 1 month into my symptoms). This time, the neuro did another physical, during which he checked my reflexes, checked for clonus, and had me walk across the room on my tiptoes and heels (this being the exercise the first neuro prescribed to monitor for weakness). He checked my tongue for twitching, and looked at my calves to observe my fascics. He couldn't see anything, and I couldn't get them to produce - this always happens at the Dr, I can be twitching all day, but as soon as a Dr wants to see, my muscles freeze up... very much like taking your car to the shop and the mechanic can't hear the engine noise that's driving you crazy. This time, we talked extensively about how anxiety and hypochondria could be playing a role in my experiences. He told me again that he is sure I don't have ALS. After 9 months of twitching, I would without a doubt be exhibiting clinical weakness - which I was not. He asked me what else he could do to put my mind at ease so I could focus on raising my daughter. He offered to refer me to a specialist at a big hospital an hour away, but he said they were just going to tell me exactly what he had. He offered to schedule another 6 month follow up. He offered to do an EMG. We decided that pursuing any of these would only continue to let fear govern my life. I had been presenting symptoms for 9 months without any weakness; I had been told by 3 doctors across 6 visits that nothing was wrong with me; my tonge had been twitching for over 6 months at this point, but I hadn't lost any function. What more did I need before I would believe that nothing was wrong with me? I left that day without scheduling a follow-up and with no intention of going back.



Where I am Now

The twitching still drives me crazy. I'm still not used to it, and every new twitch gives me a panic attack. The perceived fatigue/weakness in my thighs worries me, but I can walk/run/jump/walk on tiptoes, etc. If that weakness was actually something clinically significant, I would not be able to do these things. I try to manage my symptoms by managing stress - mostly this has been accomplished by taking Xanax. Things are going to improve dramatically in the next 2 months for my family, but until then I am under quite a bit of stress about money. On days when I can keep the stress under control, my symptoms are much more mild and generally do not bother me.



I still have bouts with fear that something is seriously wrong with me. I am terrified of not being around to raise my daughter or the future children my wife and I want to have. However, what I keep telling myself is that after 1 year of this incredibly bizarre condition, I can still walk, talk, run, and breathe. I have been officially diagnosed with a benign condition. Neurologists know more than Google or I do. I'm going to be okay, and you are too.



I'd like to thank you all for the immense relief I received throughout my journey with BFS. My absence from the forums now is merely self-preservation, and certainly not due to a lack of appreciation for all that you have done and continue to do. Keep your heads up - it's a beautiful day!
pdodge715
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Re: One Year Update

Postby mwagner on July 1st, 2013, 2:15 pm

Thanks for the update. I think your neurologist is fantastic. He sounds so reassuring and like he wants to work with you to do what's best for you. I do think you're taking the right path, and realizing that while your (all of our) symptoms are strange and bizarre, the road to acceptance isn't necessarily to get tested and tested over and over again.

Mitra
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Re: One Year Update

Postby pdodge715 on July 1st, 2013, 2:33 pm

Thanks Mitra! You provided me some encouragement early on in my journey, and I'd like to thank you again for that. My neuro is great, although I hope I don't have to see him again! Best wishes!

Also, I just realized I got censored in the original post... the *beep* was a synonym for arrogant :)
pdodge715
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Re: One Year Update

Postby RGB on July 2nd, 2013, 11:04 am

From someone at a much earlier point on this journey... Thank you for taking the time to post this honest and detailed update. It is very reassuring to hear "long term" experiences like this (and only reassuring because it is based on real experience and expert opinion!).

RGB
My history....Jan '13: Widespread Twitches. May 13': Unremarkable Neuro Exam. Jul '13: Clean EMG. Oct '13: BFS Diagnosis Today's Date: Twitching and Healthy!
RGB
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Re: One Year Update

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