Entire left of body goes numb inside: not stroke, it’s not TIA, MS

@leebos
PS, I don't think they would want me as a juror on the Mangione trial after this.

Have any of your doctors mentioned damage to vagus nerve? I’ve had severe damage for 17 years but only this past year did I find out it was vagus nerve…. Plus injury at L2,3,4,5 and C5,6,7…. 🙏🥰

I am almost the same, but I don't get migraines and my left sided numbness from head to toe for about 10 years has been constant. 2 normal emgs, a few MRIs that show the start of some disc disease. supposedly the slight herniation is not compressing spinal cord and is not causing my symptoms. I've had some vitamin deficiencies, b12 and D, but doctors say that they have never seen that present like this. Rheumatologist at my hospital won't see me, says bloodwork is fine.
I am hypermobile, unsure if it could be hEDS.
My joints have a deep ache. Constant restless leg feeling on the whole L side. My hip, knee, and calf areas twitch every single night.

No muscle loss or weakening.
Always tired.

Gonna beg my neurologist again to do all the tests even if she doesn't think they are necessary. Then I'm making appointments at different doctors. I get so depressed and angry that I stop trying to figure it out and "just live with it" like the doctors have said I have to do. Every couple of years I have the mental and physical energy to try some more investigating.

My best guess is some sort of compression that happened during any one of my falls when bouldering at the gym 10 years ago.
Started with my arm and face, then eventually whole L side. Has gotten a little worse overall but slowly, so the docs aren't worried. Constantly get flares if I do too much.

My sibling has hemiplegic migraines it is very niche. Have you gotten an MRI done during the episode to check for some swelling or edema?

@dextraterrestrial

I have all the same symptoms as you and had all the tests, bloodwork, cardio screening, EMG/NCS, brain and spine MRI etc and all came back normal other than some DDD in my cervical spine. I do not get headaches but I do have chronic silent hemiplegic migraine. Since I do not get a headache it took me 4 years to get a diagnosis but fortunately for me, when I went to my now neurologist he diagnosed me right away. I was skeptical at first but now I get Botox for migraine and am on medication and the difference is amazing. I went from getting them daily for years to once a week or so depending on the weather, hormones, stress and sleep. I know how scary the unknown is and I pray you get some answers soon. Just know you’re not alone in your symptoms or in your journey to find a diagnosis and relief.

@pakeemer Have you thought about going to a neurologist in the Texas Medical Center in Houston? Look up Texas Medical Center in Google and you should be able to find all the different hospital systems that are affiliated in the Texas Medical Center there are the majors:
Memorial Hermann hospital system
Methodist
Baylor College of medicine
UT Health sciences

And I may be missing a couple of others

Check with your insurance and see if any of them are covered under your insurance plan.

Once you near that down, I would set my sites on getting the doctor‘s names who would take your insurance and start looking at reviews.

The Texas Medical Center handles a lot of difficult cases and I’m willing to bet you could find a Neurologist there who really well help you.

I do have to admit, though, based on my experience with Mayo Clinic, they would be my first choice to go to. But if you can’t get in and you’re suffering, the Texas Medical Center is the next best bet. I know this because I live in Houston and my husband has had various major health conditions. Wishing you all the best let me know if you wind up making a decision to come here.

Twice I was driving and that happened to me in my 40s, my entire left side went numb. During that same time period I had strange capsule size nodules that appeared under my skin in various parts of my body and were also found in my heart. I never got a definitive diagnosis.
I’ve suffered from migraines with auras since my teenage years. I retired in my 50s as I had 7 different kinds of headaches and could no longer drive while treated on seizure meds and gabapentin.
I have small blood vessel disease in my brain gray matter and Raynaud’s, which is basically the same.
I also have carotid artery disease in both arteries and have had several TIAs, when I was pregnant with toxemia in my 20s, and recently in my 60s. I’ve had two episodes of Amarosis Fugax, basically a TIA in the eye, in my 40s and in the last few years. All of my vision was lost due to bright light blindness twice in my 20s while driving.
I have episodal high blood pressure, most of the time it’s normal with a 60 pulse. So I’m not on high blood pressure meds. I was told in my 20s my autonomic system didn’t function properly and my pressure drops spontaneously, sometimes my pulse is below 60.
So I’m fairly convinced that what happened to me with the side numbness and what you described is a vascular issue but I could be wrong of course.
I also have neurological issues, degenerative disc disease and a rare autoimmune neuromuscular disease called Myasthenia Gravis, in which antibodies attack neuromuscular receptors in the brain.
I think it’s a vascular issue

Am interested how it was determined you did not have a TIA?

I've had four episodes where the entire left side of body goes numb.
Have perminant numbness in both legs.
All have happened after getting a pacemaker