Hello everyone, I am a newbie here and am not yet diagnosed with MS although the neurologist is 90% sure that is what is going one. To make a long story short I have been suffering 10 years, maybe longer (i'm 31 right now) from what I believed to be gastrointestinal disorder. I basically get flares of intense upper abdominal pain, feels like an alien is going to burst out of my stomach between my ribs. It hurts all the way to my back.
Well the last 2 years (due to finally having insurance) I have had ever test known to man done to rule out disorders, and everything always comes back normal. This is good, but heartbreaking to a person suffering with no answers and no help whatsoever. My father has crohns disease and so that has been ruled out from several tests.
Fast forward to now. I am currently 17 weeks pregnant and at around 12 weeks began getting horrid headaches, migraines from hell. I figured it was pregnancy related so did my GP. Was given a prescription for mild painkiller. I went home and the medicine did nothing, in fact my headache just got worse, so I was thinking maybe this was a bad sinus infection because it seemed to be getting worse and the painkiller did nothing for the pain. So to the er I went.
I thought it would be a simple in and out experience. But instead the dr ordered MRI and lumbar puncture (they thought I had spinal meningitis). The fluids came back normal, but my MRI was abnormal. They thought I had sudo tumerousis (spl?) and I was admitted. The neurologist the next day informed me that what the nighthawk team saw was incorrect and instead said I had white matter lesions (more than I should). She wanted to do another lumbar puncture to get fluid and blood work to rule out Lyme, lupus, Ms and some other stuff I can't remember. So I got yet another lumbar puncture (yes 2 in 2 days great fun).
The dr was an idiot that gave it to me and had to poke me 3 or 4 times to get the needle in. He them had me lay down with the needle in my back to check the pressure (I guess the day before it was really high, but they gave me the puncture while sitting up which gives an inaccurate measure). Once laying down he had to reinsert the needle and couldn't get it in, it was truly a horrid experience and I hope i NEVER have to go through this again. Well suddenly he says your done you can sit up now. And I ask he he collected fluids. The look on his face said everything "Oh S**T" He either forgot or it was not in the order, either way he explains well it isn't necessary because we have extra from the day before.
So later they came and drew some blood. Meanwhile I was admitted into an actual room was in the clinical decision unit (yes sounds really important lol). The next day the neurologist came into to talk with me and informed me they would have to do another lumbar puncture to get spinal fluid and blood within the same day.
For obvious reasons I was not happy about this.. I am pregnant for god's sake! Meanwhile pain from headaches was still out of control and so I was kept in the hospital for 5 days (got pain medication, plus steroids for 3 days) The next day another neurologist comes in (a bit too into himself) and explains that he doesn't think it's MS as my proteins looked fine and he thinks I'm just having migraines. I explain that until recently I've never had a migraine at least not this bad, nor even close. I tell him my only problem is my upper abdominal pain. He laughs and says oh yes it's migraines.
The next day I am released, still having horrid headaches but oral painkillers are helping. They also give me blood pressure medicine which is used to help treat migraines. 3 weeks later I get in to see the neurologist, They explain over the phone that I will not need to get another LP as they were able to run tests and they had an opening the next day (my apt was 3 weeks away). I go in to apt and after a lot of small talk, the neurologist shocks me by saying, we got your results back and they are all suggesting MS.
I really was expecting another "all the tests came back normal we don't know what is going on". They want to do an MRI of my spine and left it to me if I wanted to repeat LP. Of course I don't but I am confused as to if the results are accurate as they were taken on different days.
My question is what are chances of false positives if LP and Blood have 1 day difference? I asked neurologist and she seemed to be of the opinion that false negatives were more common, but she couldn't give me a straight answer. I said I wanted to re-due, but I was shocked and not thinking straight. I am still sore from other 2 punctures and I really don't want to get yet another one.
What is your opinion on me needing another LP??? When my husband asked what chance she thought I had MS, she said 90%. To me thats pretty darn high, but I just need to know if I should submit myself to more torture or accept the results??
Sorry for the length
Long stories are sometimes hard to shorten, or maybe it's just me lol. Thanks for reading