4th Nuero Visit Helped Me - Hope Helps You (EMG)

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4th Nuero Visit Helped Me - Hope Helps You (EMG)

Postby UFGatorGuy20 on February 27th, 2014, 1:30 pm

Quick timeline:

First visit to neuro: December 12, 2013 - I thought I had MS. I had calf fasciculations, nasty fatigue, jello legs, balance issues, dizziness, insecure hip gait, face numbness, stuttering. All set in over a matter of days. She sent me for a brain MRI and bloodwork, but was overall not concerned as I passed all her neurological exams.
Second visit to neuro: December 24, 2013 - MRI came back clean. Bloodwork was great except my B6 was 4 times the upper limit. She advised me to avoid all B vitamin supplements for two months and to come back. B6 toxicity can manifest like MS, however I wasn't taking enough to go toxic. MS was on my mind. Didn't even think about &LS.
Third visit to neuro: Febraury 25, 2014 - Discussed how my fasciculations are now body wide (no exceptions) and big, small, how my fingers randomly ache, how my left shin feels numb and sometimes weak, the globus sensation in my throat, the buzzing, tingling, in random locations at random times like my nose, lips, ears, how I wake up and my pinky and ring fingers will be numb, my scalp will be numb, my entire arm will be numb. She was just telling me it was stress... more stress... and more stress and positional sensitivities. Didn't throw out BFS, NMT, PNH, CFS, etc. I requested a nerve conduction study and EMG. She looked at me funny because I demonstrate zero weakness and my symptoms are so transient (including the fasciculations) that I can't even demonstrate the "problems."
Fourth visit to neuro: Today February 27, 2014 - Nerve Conduction & EMG - We only focused on my arms and upper extremities. This whole mess started back in July / August 2013 timeframe with bilateral ulnar and median nerve numbness, throbbing, burning, etc. I went and saw an orthopedic doctor first a few times. He gave me some arm splints and said it was just transient irritation (again... I had no weakness). After getting on this forum and others, I began doing strength tests (pinching my fingers together, clinching my fists, etc). I started to feel some perceived weakness after doing this multiple times a day the last couple weeks... but on and off. It would last for a couple hours then my dexterity and strength would come back (particularly right forearm). Still my anxiety was exploding and I was thinking I may not make it to 35. Anyways, onto the testing. The nerve conduction showed minor carpel tunnel in my right arm and minor cubital tunnel in my left arm. Everything else is fine. Next the EMG... she could sense how nervous I was and she finally asked me why. I told her about my &LS fear. She backed up in her chair and told me that she could tell me with her eyes closed since the first day she saw me and every visit since that I absolutely do not have &LS. She was like, "you have no clinical weakness, you talk fine, you swallow fine, zero muscle atrophy, you have sensory issues, you have body-wide fasciculations that you can feel and they come and go, Klonopin helps you, you just told me you went jogging with your dog the other day and lifted weights in the gym two days in a row... do you still want me to stick you with the needles?" I said yes... I needed the reassurance. Didn't matter where she poked me, the EMG lit up responses from all my muscles... even the areas I thought I had problems with in the past. Every time I moved with the needle in me, she was like "perfect!" Normal motor unit potentials and amplitudes everywhere. Everytime she removed the needle she asked me if I wanted her to continue... she literally felt bad for me because it was so obvious to her I was fine. We went all over each hand, arm, shoulder, and my upper back.

So while I may not have a diagnosis or answers to why... I know what I don't have. I think the sooner we can all move past the thought of contracting such a rare disease in a way that it just does not manifest is our biggest first step. I know changes will come and fears may try to resurface. But, I'll just have to consider the facts and not the what ifs.. my body has started down a very different path than &LS and today I celebrate life. Our firstborn will be here in 3 months and I can finally focus on that.
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Re: 4th Nuero Visit Helped Me - Hope Helps You (EMG)

Postby Scaredlin on February 27th, 2014, 1:46 pm

Congrats! Keep this good feeling going. Don't second guess it.

I had a good emg of limb and bulbar and started to slip. DOn't fall into that trap. Log off and go buy some baby stuff (so exciting!) WHen you said your neuro said "you went jogging, lifted" that did help me - because Im in a doubt phase and I can still do all those things (albeit a tiny bit weaker b/c mentally I am not pushing myself- must get over that). I will keep that in mind as a good indicia of not having **S every time I slip.....
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Re: 4th Nuero Visit Helped Me - Hope Helps You (EMG)

Postby Xina535 on February 27th, 2014, 1:48 pm

Hi GatorGuy,

Your post sounds like I could have written it (except I did not have an EMG and the nerve conduction test on my arms came back normal, though they are painful, with dexterity issues). The neurologist said that I could have a start of a carpal tunnel or something, that was not measurable yet. But my body wide stuff started in July of last year also.

It seems that my symptoms are going down a different path, like yours, but still I am not at the point where I can accept what I don't have. I need more time and psychotherapy. And hopefully a diagnosis of some kind.

By the way, I am being sent to a rheumatologist for further testing, since my ANA (anti nuclear antibodies were positive and high enough to indicate an auto-immune disease - which is not what A** is). Have you had any ANA bloodwork done? From what I understand, it's just a simple blood test.

All the best for you firstborn!!
-Xina
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Re: 4th Nuero Visit Helped Me - Hope Helps You (EMG)

Postby magnetizzum on February 27th, 2014, 2:17 pm

Good post gatorguy....I like you're neurologist!...I'm the guy with high b6 also and trying to avoid b6. Congtats on your new baby..
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Re: 4th Nuero Visit Helped Me - Hope Helps You (EMG)

Postby UFGatorGuy20 on February 27th, 2014, 2:19 pm

Scaredlin wrote:Congrats! Keep this good feeling going. Don't second guess it.

I had a good emg of limb and bulbar and started to slip. DOn't fall into that trap. Log off and go buy some baby stuff (so exciting!) WHen you said your neuro said "you went jogging, lifted" that did help me - because Im in a doubt phase and I can still do all those things (albeit a tiny bit weaker b/c mentally I am not pushing myself- must get over that). I will keep that in mind as a good indicia of not having **S every time I slip.....


I've read numerous posts from folks that are years into this and have relapses. I think it's a little unfair to be so hard on ourselves if our mental stability goes downhill a bit if something changes. We question why... we wonder if we've taken a turn. I've seen folks on here go for numerous EMGs. If the scientific proof is needed, pursue it. We just HAVE to remember that &LS presents in a very different fashion. Weakness is first, followed by fasciculations that are generally not even felt. The fasciculations are localized and relentless. Not one big bump here, a buzz there, some twtiches over there. Sensory issues aren't a symptom. Everytime I feel my hands throb, my legs tingle, or a part of me shrivver with numbness, I get a sigh of relief. I will keep you in my thoughts and know that if you can do all the same things you've always been able to do, you are doing well. For me, I think part of the "healing" will include just out of sight out of mind on google and some of these forums... :)
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Re: 4th Nuero Visit Helped Me - Hope Helps You (EMG)

Postby UFGatorGuy20 on February 27th, 2014, 2:26 pm

Xina535 wrote:Hi GatorGuy,

Your post sounds like I could have written it (except I did not have an EMG and the nerve conduction test on my arms came back normal, though they are painful, with dexterity issues). The neurologist said that I could have a start of a carpal tunnel or something, that was not measurable yet. But my body wide stuff started in July of last year also.

It seems that my symptoms are going down a different path, like yours, but still I am not at the point where I can accept what I don't have. I need more time and psychotherapy. And hopefully a diagnosis of some kind.

By the way, I am being sent to a rheumatologist for further testing, since my ANA (anti nuclear antibodies were positive and high enough to indicate an auto-immune disease - which is not what A** is). Have you had any ANA bloodwork done? From what I understand, it's just a simple blood test.

All the best for you firstborn!!
-Xina


I believe the biggest battle is mental for us "newcomers." I've done meditation, breathing exercises, physical exercise, diet changes, Klonopin... all to help ease my mind. For me, Klonopin has been my best support, but I know it's not the long term solution. Other methods almost add stress because I KNOW I'm trying to destress while doing it. I'd rather get lost in some good music, petting my dog, photography, the beach, sports, etc. Like you I'm exploring psychotherapy, hypnosis, postiive programming... just haven't gotten to it yet. I don't believe I have had any ANA bloodwork done. But, I may just be passing it up on all the results I've seen. I'll have to check. If your ANA results were positive and high then I think that's one step for you to start moving towards accepting you don't have the worst. I will keep you in my thoughts.
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Re: 4th Nuero Visit Helped Me - Hope Helps You (EMG)

Postby UFGatorGuy20 on February 27th, 2014, 2:29 pm

magnetizzum wrote:Good post gatorguy....I like you're neurologist!...I'm the guy with high b6 also and trying to avoid b6. Congtats on your new baby..


I think there is something to the B6 issue. I know some people have methylating deficiencies (spelling?). We cannot convert it properly to process it out, so we store it up. I avoid B6 like the plague, in supplements and in foods. Two months of doing that brought my B6 back in line. But, the nerve healing can take 6 months to 3+ years.
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Re: 4th Nuero Visit Helped Me - Hope Helps You (EMG)

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