Hi, everyone! A lot of people responded to my post about a possible life changing diagnosis and said you wanted to follow my story. My story is not over yet but I have a couple updates to share with you.
When I first started getting sick, three doctors told me they thought I have multiple sclerosis, so we tested for it. Negative. When I finally got to a neurologist, he told me he thought I have something much worse than that: neuromyelitis optica! Basically at that point I spent two weeks accepting the fact that I would possibly die in my twenties or thirties or go completely blind and paralyzed from the waist down.
Luckily the tests for neuromyelitis optica came back yesterday and I DO NOT HAVE IT!!!! I FEEL SO MUCH RELIEF!!!!! 😊
The MRI shows that I have five herniated discs - two in my neck and three in my lumbar/sacral region. I also have osteoarthritis and mild spinal stenosis. None of that is good, but it's a lot better than what I was expecting.
I'm very annoyed, though. When this all started, I tried to tell my doctors I thought I had herniated discs because I had recently picked up a few couches by myself. They completely disregarded that and went straight to the scary stuff.
I saw my MRI results through the patient portal. When I called the doctor to talk about my results, the receptionist said "Oh yeah, we have your results. Everything is completely normal. Your vitamin D level is a little low, but other than that you're fine." I said "Okay...and what about the five herniated discs? I saw the results through the portal!"
She put me on hold.
She came back and said "Yeah, Dr. Tyer saw the MRI showed herniated discs, but it's no big deal. It's just herniated discs. You'll probably be okay."
I said "Okay............."
And she said "I mean you can come for a follow up Tuesday if you have any questions but there's nothing really wrong."
Are. You. Joking. ?!?!?!?!?!
Maybe my pain doesn't physically affect them, but five herniated discs, osteoarthris and spinal stenosis for a 20 year old woman is NOT NORMAL! "You'll probably be okay" is not an acceptable answer!
When I wake up everyday I am so numb I cannot lift my head, arms, or legs. I just lie there paralyzed for a couple hours before I can sit up. My brain has pins and needles. My vision goes black when I stand. I have double vision and I'm very dizzy. Not to mention the intense back and leg pain I have from those discs. Also, I don't think herniated discs explain every symptom so I think there's something else going on, too. I can't stay awake for longer than two or three hours at a time.
It does not stop there! I told my doctor I've been having trouble urinating. Eight weeks ago when I saw my primary care doctor she tested my urine. She asked if I had started my menstrual cycle that month. I said no, not so far. She said there was an insane amount of blood in my urine and that something was either very wrong or I was going to start my cycle any hour. Well... I didn't start for about two more weeks. When I had the MRI done a few days ago another urine test was done. When I logged into the portal to view the MRI, I noticed my urine results were there and I clicked on them. It still showed blood in my urine and said I have STAGE TWO KIDNEY DAMAGE!!!
WHAT?!?
Why wouldn't somebody tell me this if they have been told I'm struggling to urinate? And if I hadn't asked specifically about the five herniated discs, the doctor would have let me go without telling me I have them.
I am not happy. I am RELIEVED I'm not suffering from an auto immune disease! ...but I'm incredibly unhappy, fed up, and ready to be on the proper medication or at least in physical therapy! I have a baby who needs her mother's undivided attention!
I hope you guys don't think I'm being too negative! I'm so grateful my life is not threatened! I'm very tired, that's all. I appreciate you so much for keeping up with me and I'll share more news as I get it.
I hope you guys have a fantastic weekend!
