Good morning internet. At age 32 I woke up and my life was forever changed. I went to the ER. They did the normal test. Gave some antihistamine and sent me home. Told me to call my doctor. My doctor saw me the next day. Had an MRI done. They found a mass in my spinal cord. Thought it was cancer. Did surgery. Only be told it something like MS. Over the years I have had 3 brain stem lesions. To date the Mayo Clinic and John Hopkins do not have an answer to what is.
AMA I am 48 years old. I woke up one morning to my body slowly paralyzing it.
r/AMA
Comments
Is it MS?
Has this impacted your social life and relationships?
Are there any symptoms leading up to an attack?
Damn, that’s heartbreaking. This is my worst fear.
Hi! I have DM’d you some information.
How do you handle your health issues with your kids? I’ve got health issues that are hard to diagnose or treat and what I struggle most with is wanting to keep life happy and normal for my kids. Sorry you’re going through this.
Is there anyone else in your area with similar conditions that could point towards an environmental cause?
This sounds 100% like MS and I wonder what makes them think it isn’t?
MS is not easy to diagnose, the correct medical way is to run several dozens of tests on you for similar diseases and when those are ruled out, then it is safe to say it is MS. So, you see – MS can not be ruled out as there is no single diagnostic marker that is sure to grant you the diagnosis. It is a combination of several factors that grants security.
I was diagnosed with MS in 2021 and the sure markers that led to the diagnosis were:
Oligoclonal bands in my spinal liquor. These have to always be tested for, because these tell your doctor that there is an inflammation in your central nervous system. It has to go together with the absence of bacterial or viral activity.
Spots on a brain and spine MRI, at least two in succession. These are scars left from inflammation. They have to find one or more first, then find more of them some time after to know this is ongoing.
Exclusion of several similar diseases.
Presence of other diseases like diabetes or whatever is NOT counterindicative of MS.
You should ask asap why they have doubts this is MS and why they are not treating you for it. If they can not sufficiently answer that, seek a second opinion from a hospital specialized in MS immediately. If you have concerns that they are ignoring correct medical procedures because they ‘hate to be wrong’ as you put it, especially immediately seek a different hospital.
What does your treatment consist of?
Not much is said anymore. I go get my yearly work up. Talk about it with my doctor. After 16 years there is nothing to do. If I had another attack. Then more tests. And my doctor said he thinks it’s auto immune. But I didn’t have another attack for 9 years.
And then 2 within 6 months.
My father had MS. I Wish you strength
I’m sorry to learn you’ve become exotic in such an unpleasant way. On another note…
Why do you think access to fresh healthy food and produce has remained so limited? Everyone there recognizes the importance of nutrition yet restaurants in Rochester —including the clinic’s cafeteria— are close to a food desert. (It’s garbage in comparison to any coastal city and most university towns.)
Have your doctor’s rules out Transverse myelitis?
Hey, OP, I am so sorry.
I (35) had a similar thing happen when i was 22 (in regard to waking up one morning and not being able to walk, numb hands, legs, core, mine is MS, so st least i know what to do/what comes next, I’m so sorry you don’t have the same peace of mind)
It’s horribly scary, a personal prison, and I’m so sorry you’re facing this. I send you love, understanding, and hope for a happy future.
Have they done spinal taps and lumbar punctures?
Syringomyelia?
I am very sorry for you. I don’t know if that means anything to you, but this breaks my heart and of course makes me feel like I take health for granted, which none of us should.
I’m so very, very sorry.
One of my closest friends was diagnosed (about 13 years ago) with an incredibly rare form of MS. It was so rare that her neurologist published a paper on it so her insurance company would cover her infusions. She’s pretty self sufficient, but she’s had to accept she has a lot of limitations, and will have to adjust her lifestyle the older she gets. I feel so badly…it’s always been a dream of hers to hike the Appalachian trail, but she admitted that probably won’t ever happen.
How are you holding up?