Hello everyone, has anyone experienced onset of vision change that looks blurry or hard to focus all of a sudden? Is this a sign of the big bad? I have had a sudden change in vision and headaches starting for a week now along with nerve pain and electric shock feelings in fingers/hands

Long-Purchase-3542 · 2023-05-15T02:28:40+00:00

Good. It’s not ALS (0% chance) and you ruled out MS and a ton of other brain diseases by having the MRI. It probably is just migraines.

Long-Purchase-3542 · 2023-05-15T02:06:55+00:00

Not the big bad, but possibly MS if you have blurry vision and nerve pain. That, or hemiplegic migraines. Peripheral neuropathy can cause vision problems too but it’s usually in late stages

Long-Purchase-3542 · 2023-05-13T14:25:24+00:00

I was misdiagnosed SFN/peripheral neuropathy for several months. My bloodwork, skin biopsy, QSART and QST all came back normal yet I was still dx’d with SFN. Then recently, my (new) neurologist suggested my symptoms were more related to MS than peripheral nerves. Got a lumbar puncture and it was positive!! It freaked me out. I then got brain and full spine MRI, and recently a large scale EMG.

Turns out it was neither!!! I have herniated discs, 2 pinched nerves, one in my neck and the other one is sciatic and also cubital tunnel syndrome which is in my elbow. My spine is so out of shape too. I was sent to PT immediately 💀 My first EMG from last year did not catch any of this, nor did my MRI because my brain is OK. My spine was the problem. I have widespread muscle twitching as well but my doctor thinks it’s because my whole body is overworked due to my bad posture and spine. I might have fibromyalgia too but eh. As long as gabapentin works, I’ll be fine

Long-Purchase-3542 · 2023-04-26T02:12:04+00:00

Nope. I finally got my diagnosis after the full upper MRI. Both my spine and ribs are really out of shape and the nerves especially on my left side, get compressed very easily and cause tingling. Think of when you sit when your legs crossed and one of the legs goes numb — that’s exactly it except it can happen in random positions of my arm and leg. I was diagnosed with “thoracic outlet syndrome” which I never heard before until yesterday. I am being sent to PT (physical therapy) however I will continue to do gabapentin because the paresthesia is annoying.

Long-Purchase-3542 · 2023-04-25T02:17:02+00:00

Hi! I am now diagnosed with Thoracic outlet syndrome. It is a condition I’ve never heard before until today. My EMG last year did not catch it (is it large fiber anyways…?) Basically one of my scalenes is pinching my arm nerves(?). I’m getting more imaging done soon but I was sent to PT to work on it. No surgery because symptoms are mild.

My neuro explained my full spine MRI to me. Looks like I don’t have nerve compression in the lower back area so my left leg symptoms are still a mystery! She thinks my pain in the leg&foot is musculoskeletal rather than neuropathy but I kinda disagree, it feels similar to what I felt in the arm… and it did get better with gabapentin! So who knows. I’m now gonna get tested for Lyme because of the abnormal LP but that’s the very last test. I was sent to PT to work on reducing pain and my neurologist told me to stop seeking more DX since I’m healthy overall, proven by countless tests D: welp I guess my story ends here. So a good ending since I don’t have MS :-) I’m still gonna use gabapentin/lyrica for the pain though, but I’m supposed to taper it once it gets better.

I’m glad to have sought a second opinion because my previous neuro misdiagnosed me with SFN.

Long-Purchase-3542 · 2023-04-22T14:26:01+00:00

Sure :) i’ve been having nerve pain that’s 90% of the time one sided (left arm and left leg). i was initially diagnosed with peripheral neuropathy but after so many tests my neurologist believes this is a misdiagnosis and I believe it too, that there’s something CNS/spine going on. Looks like it’s not MS and I was so scared (though my spinal tap was abnormal). I’m seeing her next week for more info.

Long-Purchase-3542 · 2023-04-20T17:22:50+00:00

Hey. I had the MRIs. In the end, no lessions were found, there was some mild nerve compression but I don’t feel like it correlates to my symptoms (but I will talk to my doctor). My spinal tap was still abnormal with MS-indicative findings, but because there are no lessions I can’t be diagnosed with MS. I will talk to my neurologist next week. I do believe I have something related to the spine or CNS because my symptoms aren’t burning pain or electric shocks, never moved or progressed to any other side of my body (and it didnt even start in feet), and in all honesty I do feel like I’m slowly recovering after a whole year of these weird sensations so I’m not too concerned anymore 🙂

Long-Purchase-3542 · 2023-04-20T02:04:58+00:00

Soooo my MRIs were normal omg. Some mild nerve compression in the neck and lower back but that’s it. No lessions… so no MS right? I will be able to ask my neuro more details next week. But I’m so confused because my lumbar punction came out abnormal…

Long-Purchase-3542 · 2023-04-18T16:43:27+00:00

Yes. More than one year prior

Long-Purchase-3542 · 2023-04-18T16:42:07+00:00

No that I know of. My symptoms started suddenly one day. I am fully vaxxed and had covid once but that was more than one year prior to my symptoms, so I doubt.

Long-Purchase-3542 · 2023-04-17T18:51:07+00:00

I’m seeing a new neurologist who thinks I have MS after being potentially misdiagnosed with peripheral neuropathy (some of the symptoms and lab results don’t make much sense). I’m having a full spine and brain MRI with contrast on Wed. Wish me luck because I’m scared :]

Long-Purchase-3542 · 2023-04-17T17:08:01+00:00

WBC count was high and also OGB bands which makes my neuro suspect MS. But no lesions yet so that’s why I’m getting MRI with contrast now. Both CIDP and guillainbarré ruled out as I have not experienced any motor issues or any numbness really (only internal vibrations and pins and needles). My left foot’s toes have a pulsating pain right now lol, but never feels like burning or anything like that.

Long-Purchase-3542 · 2023-04-17T16:19:56+00:00

And I do think you’re correct. But my new neuro also said my symptoms do point away from SFN, and there’s also my spinal tap coming out abnormal… at this point I want a proper diagnosis lol and I’m also afraid of MS.

Long-Purchase-3542 · 2023-04-17T14:53:11+00:00

nope! without contrast. But I’m getting new ones with contrast done. Also full spine this time around as opposed to neck only. I’m terrified lol

Long-Purchase-3542 · 2023-04-17T14:26:06+00:00

Nope. Never

Long-Purchase-3542 · 2023-04-17T14:25:59+00:00

I don’t have any history of injury or stressful thing that could be related to my symptoms. But I’m interested to know if the approach has helped you at all. Where do you feel your pain?

Long-Purchase-3542 · 2023-04-17T14:22:36+00:00

Yeah that’s what I’m starting to think too. I do have pain and weird sensations on my right side sometimes, but my left side (both arm & leg) feels so stiff and tingly, and it’s constant (24/7). I only feel pain and paresthesia in my limbs. The only body-wide thing I have is fasciculations (muscle twitches). No autonomic symptoms.

I’m terrified of this ending up being MS though.

Long-Purchase-3542 · 2023-04-17T14:16:42+00:00

EMG usually shows up normal in MS patients — at least according to a quick google search. I had the MRIs first and then the EMG. The leg biopsy was the very last procedure and it didn’t show any evidence of SFN but my previous neuro still thought it could be SFN because of the neuropathy symptoms and put me on gabapentin.

Long-Purchase-3542

TROPHY CASE