Any others diagnosed with MS after Covid?

Posted by acnickel1 @acnickel1, Jan 9 6:43am

Hello,
I had my first and only Covid infection starting on Christmas 2022. I have never been so sick. I tested positive for 16 days and had a fever of over 103 for many days. I haven’t had a good health day since. After months of seeing doctor after doctor, I started to have blurred vision in and off. So, my PCP sent me for a brain MRI since it was rather sudden. That led to them finding multiple brain lesions. That lead to a neuro visit, 2 more MRIs for my cervical and thoracic spine, and a lumbar puncture. More lesions in my cervical spine were found plus indicators in my spinal fluid for MS. Has anyone else had this happen? Some infections like Epstein Barr Virus are known to trigger MS in some people, I just wonder if Covid may end up being one of those.

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celia16 | @celia16 | Jan 9 8:15am

Did you have any other symptoms than blurred vision?

acnickel1 | @acnickel1 | Jan 9 8:35am

Severe constipation, lightheadedness, bouts of extreme vertigo that last more than 24 hours, some weird vibrations and electrical like pulses that shoot down my right side, muscle jerks, weird feelings of being pinched or stabbed in my feet, extreme fatigue

celia16 | @celia16 | Jan 9 8:49am

In reply to @acnickel1 "Severe constipation, lightheadedness, bouts of extreme vertigo that last more than 24 hours, some weird vibrations..." + (show)

Apparently, a lot of the MS and Post covid syndrome symptoms are alike. I realize this must be very difficult. Have they offered any treatments?

acnickel1 | @acnickel1 | Jan 9 9:36am

I am waiting for some medication but things are hard to get and insurance has to deny everything first, then I have to appeal 😔

celia16 | @celia16 | Jan 9 10:22am

In reply to @acnickel1 "I am waiting for some medication but things are hard to get and insurance has to..." + (show)

That’s not right! That’s messed up. Does their office have a patient advocate available? When people are suffering, they don’t need to be given a hard time. Ugh…..

goffeebean | @goffeebean | Jan 9 3:50pm

I'm so sorry to hear this had happened to you! You sound similar to me! I actually had COVID 3x unfortunately... But, since the last time in November 2022, I've never been there same and have "Long COVID/Long Haulers syndrome." Because I was suffering with a lot of new brain-related symptoms, I went to a Neurologist. They did an MRI in March and found one brain lesion. They did one of the C-Spine and thankfully no lesions - but since then my brain symptoms (brain inflammation, awful memory issues, headaches, concentration, word-finding issues and other and cognitive trouble, sleep disturbance/insomnia, internal vibrations, on and on) have been so bad. So, I'm concerned things have progressed! I have a 10 month follow up coming up next week. I pray they re-do the MRI - in fact I'm requesting it. In April and May I was also came down with a severe right lung infection out of the blue that led to two lung surgeries, drains, etc and a 19-day stay in the hospital. I was near-death when I went into the ER with an O2 saturation of 82. It was bad and also apparently caused by COVID/long COVID. I recovered after about 2 months at from from that, but just recently my breathing was a little questionable, so I went back to my surgeon and got a chest CT that now showed new lung nodules in BOTH lungs with a high risk of malignancy and a 1-YEAR follow-up. I tell you - COVID has truly robbed me of so much!! I am a completely different person than I was a little over a year ago. What a thief!! Anyone else like me???

okradurham | @okradurham | Jan 12 12:50pm

Yes the Covid beast is awful . I have now been diagnosed with CMML a chronic leukemia. Just awful!! The long Covid is getting a little bit better. I am out of bed much more and doing some things. When my doctor said I don’t do Covid I do blood 🩸 well I know many who have had their blood messed up by Covid . We just have to wait for the medical community to catch up with this !!!

smdawson540 | @smdawson540 | Jan 13 4:54pm

Hello, I have had those symptoms but I have been diagnosed with POTS, Neuropathy, etc. My knees buckle and I fall. I have all kinds of horrible nerve sensations due to the neuropathy. I get headaches and pain in my neck that are debilitating. I do take gabapentin and cymbalta which help but do nothing when there is a pressure change. I have gastroparesis. And on and on. I was told by my long Covid clinic that Long COVID turns on the bad genes in your body. While we may have similar issues we are also going to be unique based on what genes we have and how they are being impacted. I am so sorry this is happening to you. I hate that it is happening to all of us. Good luck. I wish you the best medical help you can find and the best way to live with your new normal.

celia16 | @celia16 | Jan 13 5:37pm

In reply to @smdawson540 "Hello, I have had those symptoms but I have been diagnosed with POTS, Neuropathy, etc. My..." + (show)

Bad genes turned on indeed! So sorry to read about your issues. That’s a lot. Best of luck to you.

angielewis1959 | @angielewis1959 | Jan 13 11:02pm

I think the Covid Virus regenerates a dormant Epstein Barr Virus that re-attacks the neurological system, I wondered if I ever had Mono, so I asked for a blood test just to see (I remember as a teenager having a terrible sore throat that sent me to the doctor.) Was tested for Strep which was negative and sent home. I did fine out thru the blood test that at some time in my life I did had Mono.
I was diagnosed with MS in 2015 and after having Covid three times, I feel the neurology issues have continued to worsen. I think the Covid Virus is still attacking the weaker part of my body and wonder if it will continue to worsen?
There is a connection from the Epstein Barr Virus and MS and I think there is a connection from the Covid Virus and the neurological system.

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