My symptoms 2nd summer in a row-progressions?

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Mela

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Hello everyone- Last year (2018), I had posted regarding localized fasciculations and tricep/Left 4th-5th finger weakness that had suddenly occurred. I had 2 emgs which both showed only C7 Chronic denervation. NCVs were normal. I had them test my tongue as well because I've had numbness/tingling in my tongue since March 2018. Follow-up cervical x-rays & MRIs did not show much of anything at the C7-C8-T1 levels. Brain MRI (-). Blood work (+) for low b12, high copper in the blood, low copper in the urine, and borderline zinc. Recently also showed the hashimoto markers. My neuro has repeatedly told me he has confidence in the EMGS and does not believe my symptoms last year were indicative of ALS from May of 2018 till now. He has followed up with me every three months with a neuro exam and my exam remains unchanged.. My last neuro exam with him was May 24th of 2019.

Fast forward to now- 5 days after my last neuro appt, May 29th, 2019, I literally woke up with now my 1st three fingers of my left hand suddenly feeling weak with all gripping and lifting. For the next five days, I experienced twitching of the muscle between my thumb and forefinger. My index finger kept twitching for 5 nights as well like something was attacking those muscles. After those several days, the twitching stopped, but I now feel like a residual weakness through that region of my hand. I emailed my neuro and he said he wasn't worried because he just saw me and my neuro exam has been unchanged for the past year. But last week on the 4th of July, my scariest symptoms appeared... That morning, my RIGHT thumb spasmed while I was putting on makeup like I had lost motor control. Throughout the whole day, my hand from the wrist down, felt incredibly heavy and like I had a glove on it. By the end of the day, my RIght 4th and 5th fingers cramped up repeatedly where I couldn't use a fork. My right wrist and finger extensors felt incredibly weak where writing and using a hair brush for 3 days was challenging. I also had intermittent, quick burning paresthesias through the dorsum of my hand like my nerves were inflamed or something! Again, like something was attacking my muscles.

It's been a week now, and the acute symptoms have resolved, but my Right hand now feels like a "changed hand". I can type and play the piano, but every movement of my fingers and wrist feel completely different from last week. VERY WEAK. I have no neck pain or radiating arm pain-only symptoms from the wrist to the fingers. 8 days ago, my Right hand was a perfect hand, now it has a residual weakness to it, and feels worse than the left. I actually went to the ER for the first time in my life, because I was so frightened. A neuro resident student said she didn't see any neuro deficits or weakness when she (lightly) tested by strength. My normal neuro is out of town till next week and even then he doesn't have an appt. until September. Please, those with limb onset, can you tell me if ALS symptoms resemble an acute attack of the nerves/muscles followed by a permanent, residual weakness??
 
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Yes, Thank you so much Karen- I did not know how to attach it and it seemed to be "closed" when I looked it up:)
 
Multiple neuro appointments, multiple clean EMGs, and forum members who have told you dont have ALS. You've also been told what weakness is in ALS. What is it that you've not heard that you keep looking to get diagnosed? What is it that you need to be told in order for you to finally accept that you dont have ALS?

I'll tell you what weakness is-a friend was diagnosed May 2018 with ALS. At the time he was diagnosed, he was still walking fairly well. Today he is fully in a wheelchair and needs help with everything. Is this the type of diagnosis you want? You cannot let this go, so that tells me you are really looking to get a diagnosis of ALS, for whatever reason.

I feel you should step back and take a look at why you are not moving on from this disease, get professional help if you are unable to do so, and learn to be grateful for the health and life that you have.

I sincerely hope you are able to do this. Best of luck to you and do take good care.
 
I am limb onset, and nothing about your presentation suggests ALS. It sounds to me like a localized process, either a radiculopathy or a peripheral nerve compression elsewhere. I’m aware you have had an MRI of your neck within the past year. Also, your neurologist following you every 3 months with stable exams over a year points away from ALS.

Go back to the read before posting sticky Important - READ BEFORE POSTING! Answers to common concerns about possible symptoms!

In ALS one does not “feel” weak; one simply can not perform very specific actions, such as inability to fasten a button or open a ziplock bag. I can not do those things with my hands or oppose my thumbs, yet they feel the same as when I was a professional performing musician. Numbness, tingling, or burning also points away from ALS.

You state, “It's been a week now, and the acute symptoms have resolved.” That’s great, because once function is lost due to ALS, it does not improve.

You state, “8 days ago, my Right hand was a perfect hand, now it has a residual weakness to it, and feels worse than the left”. Failure in ALS does not go from “perfect” to sudden weakness within an 8 day period, and “feeling worse” is not ALS.

You can take a deep breath and be reassured you don’t have ALS. And then get a checkup with your regular neurologist if you have ongoing concerns.
 
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