Anxious and looking for some advice on what to do next, if anything.

kmikhail

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Hi everyone, my name is Kero. Thank you in advance for the taking the time to hear me out and reply. I'm really sorry to be a bother to anyone, please forgive me. I'm just kind of lost about what to do and struggling quite a bit with some health anxiety. I'll try to list what I've been experiencing in an easy to read manner as it is somewhat extensive. Thanks again for your time and consideration, and I wish everyone here the best and pray for you all as well.

Background: 31 yo male, have had issues with neuropathy in the past in my left leg starting 2008, which has basically resolved itself in the last couple of years randomly. Saw a Neurologist bi-annually since 2008 for this, who's done three brain MRIs (all clear, latest being fall 2016), a lumbar and two cervical MRIs (all three showed mild disc degeneration/bulging). He said it was unclear if this was the cause of my neuropathy or not. Early on in his testing, my ANA was positive, but has been negative the last three to four times (he was looking for Lupus/other autoimmune conditions). Here's a summary of what's been going on more recently...

March 2017 - Noticed weakness/fatigue in my left arm kind of all over (holding a book, holding my phone, lifting my arm etc...). This did not change my exercising however, I could still do pull-ups/push-ups/curls just the same as before. I went back to my Neuro, who ordered some labs and did a physical exam and said it was fine, just watch it, possibly anxiety. My labs were normal except a pretty high B6 (50, range was up to 27). Of course at this point I googled weakness in my arm and ALS came up, triggering my recent anxiety.

September 2017 - Left arm continued to feel the same, no worse/better. Started to feel like I was talking differently. Not necessarily slurring, but conscious of how I'm talking, and maybe lisping or trying too hard to enunciate. Almost as if I had something preventing me from talking fluidly like normal, like I had to work to talk properly. My wife and friends however said everything sounded fine, no one noted any slurring or voice changes.

November 2017 - Went to a new Neuro for a second opinion. He did a physical exam and noted nothing of significance but since I had this complaint and came for a second opinion said we should just do an EMG/NCV.

February 2018 - Second Neuro did NCV of entire left side of body (upper and lower extremity), EMG of left arm/hand/left side of neck (sternocleidomastoid) and left cheek. All Normal. He said to just watch these symptoms and let him know if anything changes. Basically said it was anxiety.

March 2018 - I noticed what appears to be spasticity in my right thumb. It just feels tight when I text/type, almost like it's going to spasm.

July 2018 - I injured my right thumb pretty badly playing basketball.

May 2018 - PCP repeats my labs, B6 still only thing abnormal at 42. Puts me on bupropion thinking maybe if I feel better it would help me stop thinking about the symptoms and they'll just dissipate on their own. He too just thinks its anxiety related based on all my previous workups and just knowing me personally.

October 2018 - Still feel like I'm talking differently/with effort to enunciate. Right thumb spasticity is still there, and feel like right index finger is also getting kind of stiff. Wife still says nothing sounds different in my speech/voice.

December 2018 - Left thumb feels kind of tight now as well. No real change in any of the other symptoms, left arm possibly feels normal or at least less noticeable fatigue than before.

Presently - Left index finger too feels kind of tight now too, and I feel like I exert more effort swallowing.

So all this being said, I am definitely a super anxious person, I acknowledge that. I just don't know what else to do because every time I feel like I make peace with one symptom and convince myself through doctors visits/my wife/friends that I'm okay, something else pops up. I'm limiting b6 in my diet in case this is possibly causing anything. I've also recently eliminated any aluminum based anti-perspirants just in case theres a connection to that. I'm exercising regularly (I can do about 20-22 pull-ups straight and 50 push-ups, and I run about 2.5 miles every other day). I've already tried to grow spiritually to help with this anxiety, but every time I feel something different I spiral again. We also had our first in January so she's been on my mind a lot of course in case something is wrong.

Any thoughts/advice on what to do moving forward would be appreciated, even reassurance if you feel like I'm looking too much into this. I really really do appreciate everyone's time and whatever I can do to be a help to those suffering I would love to do, just let me know that as well. Thank you again for your thoughts. Oh and yes I have all the "read before posting" threads as well. I've unfortunately been lurking here for well over a year now :/.
 

Nikki J

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Have you had any treatment for your diagnosed anxiety besides medication? The treatment of choice for health anxiety is CBT

Two neuros and your pcp have apparently said anxiety is the issue here

It does sound like you are hyper vigilant and bulbar als is not generally slow progressing. Plus you did have a proper bulbar screening emg

It doesn’t sound like ALS at all to me for what it is worth.

You are probably under extra stress ( albeit happily so ). with a little one Please consider pursuing your doctors’ diagnosis more.

Best of luck
 

lgelb

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kmikhail

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Thank you so much for your replies, I sincerely appreciate it. If I may ask, do you think it would be worthwhile to pursue other means to explain these symptoms outside of anxiety (or even ALS for that matter)? I just can't reconcile the very specific symptoms in my thumbs/index fingers in both hands as being anxiety related, or am I wrong and thats possible? The vague symptoms like talking difficulty noticeable to me, or perceived weakness in my left arm I can understand as anxiety-related, but the individual hand symptoms that seemed to go from one hand to the other seem more worrisome, considering I read that similar body parts seem to be affected before spreading elsewhere?

Granted, I did have the emg/ncv done on the left hand/left arm, but that was over a year ago and the right hand/arm wasn't tested. Or am I again just looking too much into it? Would the left arm likely have progressed by now since that was the initial symptom slightly over 2 years ago?

I'm sorry to be a bother, I'm just super anxious and I hate bringing this up to my wife and family over and over again. I wish everyone the best and thank you in advance again for your thoughts.
 

Nikki J

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No hand onset ALS does not usually go from one hand to another. Extremity onset usually spreads within the first affected limb before moving on elsewhere. Feeling tight does not sound like a specific ALS symptom and three doctors told you no.

Check back with your pcp and ask whether they think you should pursue more physical testing or be better served by trying a different approach they know you best and can examine you. In general approaching doctors with what is wrong with me. I have these symptoms is better than asking is this als

Good luck
 

kmikhail

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Thank you Nikki, you have been a great help and I find great comfort in what you're telling me. My doctors have not really explained these things to me as well you as you have, its always just blanket statements, which for an anxious person doesn't always relieve any stress. I will try to pursue other causes/detach myself from this. Thank you so much again, and if I have any updates I will report back. Wish you all the best.
 
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