Thenar twitching with atrophy, flaccid muscles in my forearm.

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Okherrdashon

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Hello and thank you for taking time to help me.

I am a 34 yo male with my first noticeable symptom starting with persistent twitching in my right thenar muscle with slight weakness and pain when gripping wider objects. This started in late July/ early August. I went to see my PCP and he referred me to see a neurologist.

On my very first appointment (about 15 minutes after meeting him), the doctor said that I most likely suffer from BFS due to the lack of other symptoms. I thought that’s a rather quick diagnosis but went with it.

Despite the meds my symptoms got worse. The twitching is relentless and shortly started to have them all over my body but not as persistently as my thumb. I’ve felt weird tingling on the bottom of my feet in the arches. My thumb twitches for all day, every day for the last 2-3 months.

I’ve gotten MRIs done of my head and neck with and did show signs of disc herniation, loss of spinal lordosis and some stenosis in my cervical. I presented that to an orthopedic spine surgeon/specialist and he said that my symptoms were not related to my MRI discoveries.

I’ve visited an orthopedic hand specialist who showed concern about my twitching and noticed my right dominant hand is weaker than my left. Noticed atrophy in my right thenar muscle. He referred me to another neurologist.

Around this time (October) I noticed the top of my left foot and left shin bone muscles become atrophied and stiff. As if I was losing strength and control in my toes and top of foot. And feeling like they will cramp and “lock” if I flex my foot muscles.

The second neurologist did a ncs/emg of my right arm(from elbow down), left arm(from elbow down) and left leg(below the knee).

This second neurologist couldn’t look me in the eye and tell me I didn’t have ALS. He stated that my emg didn’t show anything abnormal and said to come back in 3 months WHEN things get worse. Not IF. Made me feel like the test was not conclusive and that he was maybe not telling me everything.

I went back to my PCP to do a blood test which showed an elevated creatine kinase of 546. Which he said was slightly concerning but will retest soon.

My thumb is now showing contraction and is difficult to straighten at the joint where it meets the palm. There is visually atrophy noticed by my PCP, the hand specialist, and the orthopedic surgeon. Basically everyone but the neurologists. I’m now noticing that the atrophy is moving into my wrist and forearm. My tendons are VERY pronounced in my right hand and wrist. Vs my left which looks and feels stronger. My forearm muscles are becoming flaccid and soft. I can push them in and it feels like I’m pressing my cheeks. I am right handed and I’ve always had strong forearms so this is VERY scary for me. Definitely not from disuse.

My newest symptom is cold sweats where I wake up to sweaty clothes and sheets. I’ve been experiencing some extreme fatigue which is very new to me. I’ve never had to nap or feel sleepy during the day. But lately find myself very sluggish, exhausted and having to sleep more.

It seems like the doctors that I’m turning to for help are either unwilling to help me and keep referring me to someone else or not willing to say what they think. My PCP keeps making referrals and everywhere I go they say that I’m fine in their area of specialty. But I am not. I am very much experiencing something abnormal. I don’t have a diagnosis and it is driving me crazy.

I just want to thank anyone who’s taken their time to read this long post. I’ve been lurking on this forum for a while now and appreciate all that you guys do.
I just wanted to share my story to vent a bit. And say F als.

Please pray for me and my family.
 

Nikki J

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Since you don”t have a question I will just say if you feel the doctor is concealing something seen on emg Get the report. You are entitled to all notes and test results. They are usually available on patient portals without you having to request anything. Waiting is hard. If this is stressing you out ask your pcp for a referral for support
 

Okherrdashon

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Thank you Nikki,

The reports were made available to me. But to me they are just numbers on a page. Other than the verbal “nothing is abnormal”, I haven’t got any relief from the EMG. My main question is could this be ALS? I understand that I’m not here for a diagnosis. I’m just wondering if my presentation was something that could be als despite one neurologist believing it it BFS and another not being conclusive despite a EMG. Whether it is als or something else. I just want to know so that I don’t have to keep asking myself what’s wrong with me. I’m praying that it is not and want to believe the words of the neurologist more than anything! But my symptoms are just not improving and in fact getting worse.

Should I advocate for a visit to an ALS clinic for a second opinion? Second EMG? Where they test more than just the symptomatic limbs? Is there a difference in the EMG of my arms and legs vs body like thoracic and bulbar areas?

Thank you very much Nikki.
 

Clearwater AL

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Okherrdashon, key sentences in your thread…

“He stated that my emg didn’t show anything abnormal.”

“…and everywhere I go they say that I’m fine in their area of specialty.

(Really, try and accept.)

You have seen an array of professional doctors in their fields. Nearly none of them leads to a path of your concern and worry of having ALS.

You are not a doctor… they are. Of all the doctors I have seen and my wife has none of them willfully hid anything.

At this time you should really ask your PCP for help with Health Anxiety.

Hope the path to a normal healthy life for your age comes soon.
 

Nikki J

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You have a three month follow up apparently with neuro 2. Not sure how long that is now but there is value in seeing the same person who can assess changes. The interpretation / conclusion and the page with the actual emg ( needle) test are the important parts. The needle chart will have muscles listed in the downward column and horizontally categories like fibs, psw etc. if you care to post those page ( with all identifiers removed) we could try to comment. Usually the conclusion is quite clear though
 
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