What next?

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What next?

Postby miked18 on October 6th, 2014, 4:30 pm

Hello everybody.

First of all, my apologies if there is a more suitable board this belongs on. Secondly, I understand that most are not medical professionals here but I thought maybe some of you have been through these trials and tribulations and could offer expertise. I am a 26 year old male. I have been having symptoms for the last two years. Twitching started in November of 2012. I actually noticed my left arm kind of felt odd before the twitching began. But anyway, I have been having them ever since. They pop up all over my body but definitely more so in my left arm. The more general twitches vary from small repetitive ones to the occasionally large one that will cause my entire limb to jerk. But the ones in my left arm feel different, almost like they're closer to the bone and not near the surface of the skin. I also notice an increased frequency if I bend my arm a certain way or hold it up over my head. I have noticed other changes with my body. When I roll my shoulders I can hear many bones cracking/popping and its uncomfortable, almost painful. When somebody brushes up against my foot I jump like crazy (which I never had before) and occasionally I will get a random electric shock like jolt through the bottom of my foot. The symptoms are leading me to believe my issues stem from the nervous system.

In January of 2013 I had a normal MRI followed by a normal EMG. Also had blood testing for many many things including Lymes and Guillian Barre. Over the last two years, I have noticed only mild changes. I did stop working out because I found it to be more painful and it felt as if I was damaging my body. I have had to remove two links in one of my watches over the last two years. I play guitar and notice my timing has worsened and my control over my pinky is not as good as it once was. I play tennis often and switched from a two handed backhand to a one handed, because I was not having any control over the two hander.

Anyway, over the two years I visited other doctors. I was sent to Mayo in J'ville who after a basic strength test sent me on my way. I then went to USF Tampa which performed an EMG, also with normal results. Two weeks ago I once again had the EMG and MRI redone. Again normal.

My neurologist suggested at this point I have a muscle biopsy done. My question is this. Is a muscle biopsy a good idea, considering many of my symptoms are nervous system related and not muscular? Would a muscle biopsy show an issues that could cause these symptoms? I am well passed the ALS fear stage but am wondering what next. Again, I know most of you are not medical professionals, but was hoping someone's personal experience may help me make a decision of where to go from here.

Thanks in advance,
Mike

BTW: I have had other odd symptoms, just cant be sure they are all related. In the past 2 years, I have had 4 dizzy spells which have led to intermittent vision disturbance, tingling throughout, and feeling faint. Also I should add my symptoms do not affect my every day life all that much, with exception of the weight lifting. I can still run, lift heavy objects, no objective medical weakness.
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Re: What next?

Postby Xina535 on October 7th, 2014, 3:45 am

Hi Mike,

I am not a doctor, but if your neuro suggested a biopsy, then I recommend doing it. From what I know, it can show if you have issues with absorption or maybe just to rule out that anything is wrong with your muscle fibers.

Wishing you the best,
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Re: What next?

Postby emmie.s on October 7th, 2014, 7:21 am

I was also offered a muscle biopsy in the past to see if my symptoms were due to some sort of small fiber peripheral neuropathy, which EMGs are poor at detecting. However, I declined because I was ready to accept the BfS/bfs diagnoses. My neuro didn't push it on me, and when I asked my other neuro, he said something along the lines of if it was a small fiber neuropathy, so what, we would focus on treating its (the electrical, burning sensations and pain) regardless of what it was called. He said something along those lines.
I guess maybe ask exactly what the neuro is looking for with regards to the biopsy and go from there? And if you're symptoms are bad enough and you want some answers, then it never hurts.
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Re: What next?

Postby RobJ on October 7th, 2014, 5:06 pm

You sound like I did when I was 25.

I did have a muscle biopsy because of elevated CPK, they ignored the twitching. They found nothing in the muscle. I was reassured that there was no muscle disease until I talked to other doctors who asked all sorts of questions about the muscle biopsy, not enough information was in the file I guess.......

The muscle biopsy was painful. I won't do another one.

It was very painful......You might want to do it. There is hope for some muscle issues that cause twitching that can be repaired with modern medicine...but plan on some time off...hurts like hell
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Re: What next?

Postby miked18 on October 8th, 2014, 9:56 am

Appreciate the advice guys. Gives me something to think about. I will definitely inquire as to what them muscle biopsy would be looking for, relating to my symptoms. Rob, was your biopsy performed in the 90s when you first experienced the symptoms? Only reason I ask, is because most websites really down play the pain. Saying maybe some soreness up to a week later. Wondering if technology has advanced in that respect since then? Or maybe it has to do with the location of the biopsy. I'll definitely think twice though, considering my CPK levels were not elevated. I'm nearly certain it wasn't over 100. But thanks guys. Really appreciate the advice from everybody.
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Re: What next?

Postby elliottok on October 10th, 2014, 10:03 pm

I can't believe the neuro wants to do a muscle biopsy - that's absurd. Given your history, it seems totally unwarranted. What your neuro really needs to do is look you in the eye and say "stop worrying - you're okay." You've got to stop going from doctor to doctor. You've got to trust the diagnosis they've given you and move on with your life. You have no weakness after two years of twitching - you have no serious neuro disorder.
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Re: What next?

Postby RobJ on October 11th, 2014, 8:20 pm

it was done in May of 1994. I have a gash that is about 3" long on my left thigh, you can still see the holes where the staples were used. It was very painful. They used stitches and staples. Very painful when the stables were removed. The muscle biopsy was because of the elevated CPK. It was over 1100 at this time, today it's between 400-500.
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Re: What next?

Postby miked18 on October 22nd, 2014, 9:26 am

Wow. Yeah, that's incredible. I'm doubting more and more whether I should subject myself to that.

But to the other commenter, I have not been given any diagnosis from any doctor. In any case, it really doesn't bother me all that much. I know that I do not have ALS. But at the same time, I am not convinced it is "benign." My calves are in a constant state of cramping. The persistent shocks in the feet... And I have yet to hear of BFS affecting somebody asymmetrically.

Maybe I need to do some more reading here to see all the different symptoms that BFS can bring because I have a lot of symptoms not mentioned on most articles I have read about BFS.

Again though, I appreciate the honesty and advice
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Re: What next?

Postby leaflea on October 22nd, 2014, 3:21 pm

Miked - I would say about 75% of us have mostly one sided symptoms. Saw a big thread on this not long ago. Someone surveyed.
Matthew 6:27 Who of you by worrying can add a single hour to his life?
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Re: What next?

Postby SecretAgentMan on October 23rd, 2014, 8:02 pm

Mike,

For what it is worth, here is my 2 cents. I got BFS in the end of 2009~early 2010 in my young 30's. I went through the same fear, worry, and panic over my health like just about everyone else on this board. I went to my GP and did all the testing, CT scans, blood work, and then moved on to the obligatory neurologist. I too was given a clean bill of health after all the tests, exams, pokes, and prods. At the end of all of that they basically shrugged their shoulders and tried to prescribe me anti-depressants for the symptoms, even though I wasn't depressed. I knew in my core that this was not the answer and I could see the writing on the wall. Despite all of their medical training they did not know what was wrong with me and after ruling everything they did know out, could only offer a band-aid to potentially help mask the symptoms.

I wasn't happy with this and also asked that big question. "What next?"

At that point I decided that I was going to have to expand my horizons and out of my comfort zone if I wanted to really exhaust my options. I went to go see an alternative medicine doctor under the holistic category. Between chiropractic, acupuncture based methods, and nutrition I was able to find many of the answers and relief I had been seeking. If you've never considered that avenue, you may want to. If not, maybe keep it on the back burner for later. If you do go exploring, just remember that no two doctors are equal, no matter what field they specialize in. Don't write off an entire approach if you have one bad experience. I wasn't too happy with my first doc in the alternative field but I learned a lot from them and was able to find a much better doc based on that experience.

You sound like you have the right attitude so far. You don't sound scared and fearful. That is the first thing that needs to be overcome. I also learned a lot about myself and how my mind works from this experience. I also ventured into the hypnosis area for my anxiety. I learned meditation and practice it daily. I truly do believe it has amazing health benefits no matter if you are sick or healthy. You also may want to look into that. Even if you don't have fear and anxiety problems, learning to center yourself and practice mental discipline does nothing but help. Good luck to you.
If your mind is your own worst enemy, why not make friends with it and turn it into your greatest ally? Mental discipline is achievable and there is help available. Learn what works for you, practice, and change your life for the better.
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Re: What next?

Postby miked18 on November 9th, 2014, 5:44 pm

Thank you guys for the responses. I have considered alternative medicine. Honestly, I dont know where else to go from here. Unless I feel its necessary to subject myself to a muscle biopsy or spinal tap. This week has kind of been a bad one. Bouts of dizziness and instability on my feet. It has been messing with my vision and ability to concentrate. Those symptoms always come back with no warning. Honestly, I much prefer the muscle twitching to these symptoms Im having at the moment. Just have to remind myself that it should only be temporary as they have been in the past.

What alternative medicines did you find most helpful secret agent man? I already take b12 pills, not that I would consider it alternative medicine. Not sure if it helps my symptoms or not. I really appreciate your reply. Makes me feel better knowing my symptoms arent unique entirely and there are so many others in the same situation.
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Re: What next?

Postby SecretAgentMan on November 9th, 2014, 8:10 pm

miked18 wrote:Thank you guys for the responses. I have considered alternative medicine. Honestly, I dont know where else to go from here. Unless I feel its necessary to subject myself to a muscle biopsy or spinal tap. This week has kind of been a bad one. Bouts of dizziness and instability on my feet. It has been messing with my vision and ability to concentrate. Those symptoms always come back with no warning. Honestly, I much prefer the muscle twitching to these symptoms Im having at the moment. Just have to remind myself that it should only be temporary as they have been in the past.

What alternative medicines did you find most helpful secret agent man? I already take b12 pills, not that I would consider it alternative medicine. Not sure if it helps my symptoms or not. I really appreciate your reply. Makes me feel better knowing my symptoms arent unique entirely and there are so many others in the same situation.


When I got to that point where I realized my GP and neuro had no answers to give, I started thinking outside the box. I suppose looking back on it now I didn't realize it at the time, but I started addressing the problem from a mind, body, spirit perspective. The mind and body aspects were first and spirit part followed soon after. And no, I'm not talking about anything religious. I remember leaving my GP's office really let down that he did not know what was going on with me or what to do to fix it. I don't know what gave me the idea, but I was in the parking lot walking to my truck and I just decided "To hell with all of this, I am going to try a hypnotist for this anxiety." While I was in my "To hell with all of this" mind frame, I also decided to look up a holistic medicine doc when I got home. I made two appointments in close proximity to each other. One with the hypnotist, the other with the holistic doc. The holistic doc did chiropractic and nutrition. I ended up not liking the first doc I saw and after two or three visits I searched again and found another one that was closer. I liked her a lot more and she also offered acupuncture in addition to chiropractic and nutrition. This is the mind and body aspect. The hypnosis was amazing at helping me relax. The symptoms were always so much better when I was relaxed. The doc I was seeing addressed much of the body.

One thing I liked about the holistic doctor I was seeing was that she was really trying to get to the root cause for what was going on. She was not just asking about my symptoms and then trying to give me something to cover them up or make me feel better. She was goal oriented around actually fixing what was causing the problems in the first place. This is where I found I had a lot of work to do in my digestive system. It is amazing how much our nervous system and immune system depend on the health of your intestines. It is also amazing at just how bad our foods are. Things are labeled as natural, whole grain, healthy, and pick your favorite buzz word, but they are far from it. Every person is different. I learned that depending on your blood type and genetic makeup, some of us thrive on different foods. We have far too many chemicals, preservatives, genetically modified organism (GMO), sugars, artificial sweeteners, anti-biotics, and so many other things that are harmful to our digestive health in our food and water supply. It is amazing to me at just how majorly these things negatively affect our digestive system and our health overall.

A large part of my healing was digestive health related. I experienced a great deal of relief through relaxation exercises, but until I fixed my diet and digestive health the relief was only partial and dependent on there being no source of anxiety. As I continued to heal the relief became longer lasting and more permanent. The last of the healing did not finalize until I later addressed the spirit aspect. Again, this is not religious. Somewhere along the journey of recovery as I was experiencing these amazing results, I began to really ponder deeply the meaning of all of these events. In experiencing acupuncture, acupressure, and acupuncture based allergy elimination techniques, I pondered the nature of this 'energy' that was being worked with. What is it, why is it there, and why is it so powerfully effective? How can this invisible and almost unnoticed 'energy' be so incredibly powerful at influencing real physical conditions? Furthermore, why was it so responsive to my thoughts and emotions? Long story short, this led me down a path of contemplation, self-discovery, and a reinvention of how I think, act, and live my life.
If your mind is your own worst enemy, why not make friends with it and turn it into your greatest ally? Mental discipline is achievable and there is help available. Learn what works for you, practice, and change your life for the better.
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