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Postby Mark1369 on March 18th, 2014, 8:28 am

Hello all, I am new to the forum and I'm sure many of you can relate but it was a relief to see that there were so many people experiencing what I have been going through over the course of the last 8 months. Before reading some of the posts, It felt like I was going through this alone and that what I was experiencing was some strange phenomenon that no one could explain. Here's my quick story:

About 10 months ago I became pretty ill with an upper respiratory infection. I ended up with a bad case of bronchitis which lasted almost 2 months. At the same time I was getting ready to make a big move for a new job. There was some stress but not more than manageable. I've never been one to handle stress poorly. One morning I woke up and I felt very jittery - my arms were sort of vibrating and my legs were pretty shaky. I also was showing some tremor in my hands, especially when I typed. I went to my GP thinking that I was developing something new. I was in good health - worked out 3-5 times per week and enjoyed running and weights. I'm in my mid 30's and would consider myself pretty active.

GP ran a bunch of tests (You name it, I took it) Lyme, vitamin deficiency, toxins, heavy metals, etc. etc. Probably many of the same tests all of you have taken. Nothing. I moved, started the new job and things got a little worse. I started getting some random twitching throughout the body - everywhere. A couple thumps here, there - yadda yadda.

My new GP thought it was essential tremors or anxiety brought on by stress. He also suggested a nuero. Skip to today: 2 Nuero's 2 GPs a brain MRI and a couple of EMGs plus a skin biopsy for small fiber exam... Nothing (biopsy still pending). Everything normal and fine. I also humored the Dr and talked to a therapist who thinks that I do have a little anxiety around this issue but that I am atypical for an anxiety case. Here's some common symptoms I have experienced in the last 8 months:

Shakiness/Jerkiness
Tremor (moves around, commonly arms/hands/legs sometimes chin, neck chest)
Twitching
Pins and Needles in feet
Some numbness at times
Dizziness
Electrical sensations throughout
Internal tremors (like an earthquake??)

The last Neuro and a good one I think - thinks it is essential tremors or BFS - viral induced - but as most of you know - that is kind of a hard thing to quantify. She prescribed some mysoline to help. It hasn't really been my favorite remedy so I am really just trying to go without most of the time. The therapist gave me an anxiolytic which I take in low dose that also has a muscle relaxing effect. That has worked the best - but I have lowered the dose to the lowest possible dose I can take... I don't like meds.

Anyway - these things have all been pretty scary at times and I made the same mistake as most by googling symptoms early on which definitely put me in a bad place. As time has gone on, things have gotten somewhat better - it comes and goes in waves. Some days are better than others. I have been successful at not changing my routine even when in discomfort. I still am active with the fam - and work very hard to not think about this as much as my brain tries to force me to. I am a very happy guy with not much to complain about - except this. I have not had any other issues like weakness, atrophy etc... None of that has happened at all in 8 months so that is the blessing.

I guess I am here for the same reason everyone else is - some reassurance and also to help and share what has worked for me and what hasn't. I don't have the impending doom feeling about ALS or MS anymore like I used to but that doesn't mean I still don't sometimes have a stray thought or do some ridiculous self-test to reassure myself at times. (Although it is getting more rare that I do)

I have never posted or joined a medical forum before this - but I felt that I should since it helps to get some of this out and see that there are others like me that have been going through this.

If I can help in anyway, let me know.

-M
Mark1369
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Re: New to the Forum

Postby donnastar on March 18th, 2014, 9:42 pm

Welcome to the forum Mark and the strange symptoms we have all experienced. Thanks for sharing your story and know what you mean by the "waves" coming and going. Sounds like you've been riding the wave fairly well and not letting it take over! The real symptoms cause real fear so really good to hear it hasn't taken over your life; I find that hardest obstacle. Similar as you describe I experience life stressors and they seem manageable, however I'm considering talking to a therapist as you have already. I guess we can all learn to ride that wave better. The vibration sensation started over 2 years ago and this April will be 2 years of body wide twitching. I'm doing much better and the pending doom feeling is gone but do have my days that's for sure. This is my first and only forum too and appreciated the sharing and offering of peer support so appreciated reading your experience!
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Re: New to the Forum

Postby Gamindsoc1509 on March 19th, 2014, 2:10 am

Hey bud!

Reading you're story was previous crazy. Admittedly I have had no sensory issues with my experience but my similarities are as follows.

I had a flu which developed into a chest infection and bronchitis. I was *beep* for 3 months.

Twitching started from there, and now I appear to have the twitchy sensitive muscles and cramps with a few other issues I can't really explain or quantify yet.

Currently 6 months into this mess. I have seen a neuro but haven't had an EMG, just extensive blood work.

Your 8 months in so doesn't sound to sinister.

How much does it actually effect your life? Not including anxiety but the symptoms themselves.
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Re: New to the Forum

Postby Mark1369 on March 19th, 2014, 5:27 am

Thanks Donnastar! It's funny - I only talked to the therapist because the first set of Drs didn't know what it was and thought it was anxiety. I was willing to try anything. Looking back, the only anxiety I had and sometimes still have is about this health issue. I really don't dwell on it anymore like I did in the first few months. Not I just sort of think about it infrequently - usually when I have a flare up. (For lack of a better word). A few people have said this but TIME truly is the best medicine. Once we realize that there is no dark shadow looming over us and that eventually WE can make our symptoms better - it helps. Good luck! Let me know if I can help!

@ Gamindsoc... I didn't do my EMG until about 6-7 months in either because the neuro didn't think I needed one. The 2nd neuro (the better one in my opinion) did one right away and it was clear.

The symptoms will run your life exactly in the amount you let them. For me, they affected me early on for a short time (about a month or so) until I realized that my mood and participation in activities with my family was being affected. Once I came to that realization - I forced myself to do things and become active when I wasn't feeling great. That helped me forget my symptoms and focus on things that mattered - like family and fun. Keeping your mind off of it and focused on positive things is the biggest symptom relief for me. It has helped and normalized how I see things. 8 Months in and I see this as an inconvenience rather than a threat (most of the time). Like I said, sometimes when the stuff is bad - I still wander - but like Seinfeld said, " I am the master of my domain!"

Hope that helps - good luck and you will get through it!
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Re: New to the Forum

Postby donnastar on March 19th, 2014, 7:03 am

Hi Mark, I feel the same way, never really experienced true anxiety until these symptoms started. I don't believe anxiety is the cause for me either. I do know the impact it has had on my life and agree time is the best medicine. Do you still see a therapist and do you believe it helped (along with time) to the positive mind set you have today?
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Re: New to the Forum

Postby Mark1369 on March 19th, 2014, 8:31 pm

Donnastar,

I do - I'm still not too far removed from when I was told it was just anxiety but even though I don't believe that I have an anxiety issue, I do know that I experienced some when I wasn't in a good place with what I do have. The therapist helped put it in perspective and also helped reassure me of what this wasn't.

I see him about 1-2 times per month - although I see that reducing next month and hopefully eliminating that in the near future. I really think I'm past needing it but I can't say it wasn't helpful. He also helped with some medication early on that calmed me down a bit and also gave me some great tips on cognitive behavioral therapy and meditation that I never would have tried on my own. I always thought that stuff was hokey - and still do to some extent - but that is probably just my pride talking... :) in the end I think talking about it helps and as long as the person you talk to is supportive - all the better. I just feel that my family is supportive enough for me so I see it as a very short term thing. I've only used him the last 3 months.
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Re: New to the Forum

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