I feel my life will change forever tomorrow

Hi Mike, I’m so sorry you’re dealing with all these strange symptoms and unimaginable worry especially with a child at home. My only words of comfort is to tell you neurological stuff can be so weird and hard to pin down. As annoying as it all is, it’s usually nothing deadly. I went through an ALS scare 10 years ago as so many people on this platform have and mine turned out to be just another manifestation of a rare hereditary neuropathy that affects my entire body with so many symptoms including poor reflexes and some other symptoms you mentioned. My son (he inherited it) and I have both been dealing with weird neuro stuff since we were teens. Many others here too. It’s so scary when you don’t know what’s causing your symptoms and feel them progressing. Praying you receive an explanation tomorrow and some sort of encouraging news.

Thank you very much.

Mike I had all of the same symptoms you have about 1 year ago. I had terrible fatigue, weakness ( though not clinical), numbness in feet, hands, and face, night sweats, trouble breathing deep when exercising, full body unexplained muscle twitching, tinnitus, a month of digestion issues, erectile dysfunction for 6 weeks, muscle cramping, and hypnic jerks when trying to sleep.
I was absolutely convinced that I had ALS. I saw 2 neurologist and didn’t believe them even though my EMG was clean, and my NCV only showed mild axonal sensory polyneuropathy. The second neurologist did talk me off the ledge a little by explaining that ALS is about weakness not numbness. He also put in my visit report that he assured me that I don’t have ALS.
I rarely left my house for about 4 months until my symptoms slowly started to subside. I still have numb toes, the fatigue comes and goes, some brain fog, and ear ringing, but my muscles are coming back finally and I’m 56 years old. I’m even considering returning to my baseball team this summer. I was recently diagnosed with Thoracic Outlet Syndrome which can explain a few of my symptoms, but as far as the others, I’ve had doctors theorize I had long covid (possibly due having covid twice and a blood test that showed low lymphocythe percentage when this started), an unknown virus, an unknown nfection, post concussion syndrome, and compressed nerves in my neck and lower back to explain the numbness.
I do remember reading a story about Steve McMichael from the Chicago Bears who was diagnosed a few years ago with ALS. He said the first visit he had with a neurologist, they lifted his arm up and it fell straight down on the table. He had no motor skills in his right arm. No strength at all. I still thought I was heading in that direction, but it seems the disease spreads fast once symptoms begin. I am feeling much better now that I am a year out and finally gaing strength.
The last thing I will do is tell you is not to worry because I know it won’t help, but just know that I know exactly where you are. I was absolutely convinced and couldn’t be reasoned with a year ago. Please keep us updated if you feel comfortable doing so. Sending you good wishes.

About 30 years ago I had symptoms similar to yours. Numbness and tingling that started in my feet and traveled up to my chin. Everyday a little higher on my body. It took months,but eventually I was diagnosed with Transverse Myelitis. Its an inflammation and demyelination of the spinal cord. Its best diagnosed using MRI with contrast. I had serious fatigue as well. I also had a test called Evoked Potentials. It showed a slowing in nerve transmission as it passed through the affected area. The lesions on my spinal cord lit up under the contrast dye in MRI. For most folks TM is a one episode thing. Some of us go on to develop MS. I did. Do some research on TM and ask your doctor to do the same.

@mike1982
I am also going for EMGs today and tomorrow (upper first then lower). I am a 55 year old female with a 15 year old son (a single parent). I understand your fear.

Have you had a skin punch biopsy for small fiber neuropathy? Have you had MRIs of your head, cervical spine and lumbar spine? Have you had extensive bloodwork to check for vitamin deficiencies, toxicities, autoantibodies, etc.? Do you smoke or drink alcohol? Have you had the Covid vaccines and virus?

I empathize with you and wish you good luck tomorrow. I have my three limb EMG scheduled in two weeks and also dread hearing what I don't want to hear. It is scary, but I am somewhat encouraged by the number of people that have responded with a diagnosis which isn't a death sentence following EMG's.

You can also have abnormal EMG/NCS results and have nothing life threatening. My son and I both had our first tests at 21 which was 45 years ago for me and 20 years so for him. Abnormal for both of us yet here we are still living our lives. Many annoying issues? Yes. A death sentence or immobility? No.

I feel empathetic for you, because I went through similar symptoms for about 5 years! I had EMG’s and brain and spinal MRI’s etc. Numbness and twitching were problematic. I’m glad that I did not Google symptoms, because with neurological issues, it’s best if one sees a neurologist, and lets them sort out what symptoms mean, concerning diagnosis. I remembered reading the book about Lou Gherig, and thought at the time that it would be a disease that I would never want to have! Anyway, the final diagnosis for me, after the neurologist thought I might have demyelination, was that I had an enlarged brain artery pressing on cranial nerves, at the cerebellum level! I’ve been on two blood pressure medicines for nearly 50 years, since that time, that make pressure on that artery lower, so symptoms subsided somewhat! Hope your next day went better than expected!