EMG - "MILD AXONAL NEUROPATHY"

@pm56
Have you had MRIs of your brain, cervical spine and lumbar spine to see if your central nervous system is affected and causing some of your symptoms in your lower body? Did you have neuropathy bloodwork to check for abnormalities/deficiencies? Are you diabetic, do you drink alcohol/smoke/vape or have you been exposed to any toxins? Certain viruses can affect the nervous system so it would be good to check for viral causes. Did you have Covid or similar symptoms in 2019-2020 at the start of your symptoms and have any reactions to the Covid shots?

What other medications are you receiving.
Are you on any disease modifying drugs?

Yes - two MRIs when I started exhibiting symptoms as mine aren’t neatly defined and my rheumatologist wanted to initially rule out MS. I had one right before Covid and then one after my first bout of Covid. Also of the spine. I know the neurologist ran bloodwork looking for certain markers before the EMG and that all came back looking good. Not diabetic. Not exposed to any toxins as far as I know. Former smoker (back when I was young and stupid), I drink wine once or twice a week but no hard liquor and do no recreational drugs of any kind. Is it too late at 57 to start? Kidding …

My autoimmune diagnosis came at the end of 2019 and while I didn’t have any issues with the vaccine itself, my first bout of Covid left me with blood clots and lung scarring. I got it 3 more times after that. I am now on blood thinners for life after a second blood clot. My doctor thinks Covid definitely made my underlying condition worse as we seemed to have things under control for a while, and now no matter what drug we try, no such luck. I’ve developed an essential tremor as well which the neurologist says is separate to the rheumatological condition. Since my immune system doesn’t work well plus I’m on multiple immune suppressants, I no longer get vaccines or boosters, I go into the hospital for Covid infusions.

Oh yes, there’s been no shortage of drugs! I didn’t want to start on biologics right away back then as I’d heard that once you start you can never get off, so I started slow on Sulfasalazine hoping that would be enough, then added Methotrexate, then added Humira. Switched doctors and she added Medrol as my symptoms were getting worse but the biologics weren’t working as well as I needed them to. Then we switched the Humira for Enbrel … then for Orencia … then for Rinvoque … then for Rituxin … then the brand new Consentyx infusion. I waited 18 months and tried a slow taper off the Medrol which led to severe flare and a wheelchair. Next month we’re going to try Remicade. If that doesn’t work, then I think I’m officially out of options as I developed a blood clotting condition after Covid so what’s left isn’t available to me.

Hi @pm56, I don't have axonal neuropathy but you are definitely not alone with many other discussions on this type of neuropathy. In case you haven't seen them, here's a link that lists the different discussions - https://connect.mayoclinic.org/search/discussions/?search=Axonal%20Neuropathy

@pm56
I laughed when you said it may not be too late to start recreational drugs (I just turned 56 and also used to smoke when young and stupid, don’t do drugs, don’t drink except for occasional glass of red wine). Some days I would t mind escaping my body for a while. 😉

I have had heart issues since Covid shots and now EKG shows old infarct! Episodes of difficulty breathing and chest pain when I woke up was very scary (I’m female and my mom died of a heart attack at 67…I am a single parent and sole provider of a teen son)!

I had my rheumatologist do testing years ago and a couple tests years apart showed I have anti-phospholipid syndrome. Have you ever been tested for that? I only found out how this syndrome plus Covid shots caused problems for me related to my heart/lungs.

I don't smoke, I don't chew, and I don't go with girls who do!

You're definitely not alone! I've felt alone as of late but then remembered that Mayo has this supportive type of environment. I'm glad I clicked the link. I've got Axonal and Coronal Chronic Inflammatory Demyelinating Polyneuropathy or CIDP. Not fun!! Waiting for the next round of specialists. My body is reliable about 20% of the time, so it seems. Seropositive rheumatoid arthritis, Hypercontractile esophagus, PLMD, chronic Inflammatory sinus disease (going to see a new ENT specialist this afternoon in regards to that surgery coming up) , Fibromyalgia, Anterior Rectocele, Cystocyle, Perineocele, Spastic pelvic floor syndrome, Migraine, DDD all throughout my spine with some angry herniations, Intractable pain, and unfortunately many more comorbidities. You're not alone. I was just referred back to a GI specialist at Northwestern and am scheduled to see him in May...he added me to the wait list fortunately. I'm told that the only place that can accommodate my case for pelvic floor pt is within some outpatient pt center at Northwestern. Going to make those calls to get on the books. I've got more to share but my body is telling me it's time for a little rest before the new ent surgeon. Wish me luck!

Yes, my hematologist and rheumatologist worked together to rule out any possible causes of the clotting including APS and came up with nothing besides covid. Apparently there are plenty of other patients like me who never had clotting issues before covid who developed them after.

I’m sorry to hear you’ve had these heart and lung issues since the vaccines. Hopefully you’ve been able to find great specialists in your area to help you.

Yes, thank you so much John. I had gone through these. I am still new to this diagnosis and researching, but I am realizing it’s not peripheral neuropathy or diabetic neuropathy as I have no numbness or tingling. My major symptom off steroids is weakness and difficulty walking and with coordination and muscle pain. On steroids I walk with just the very slightest of an abnormal gait that one might not even notice - off steroids I shuffle like I’m a 103 years old and need a walker.