Patients Multiple sclerosis
Topic of the discussion
Posted on 5/5/20 9:16 PM
Hi everyone, this is my first post on this site.
I was diagnosed several months ago through symptoms I've been having for over 2 years and the result of my MRI. My neurologist decided after diagnosis to send me for a lumbar puncture as he stated the MS clinic would want it done.
He called me today to say the lumbar puncture was clear and although he thinks it is definitely MS, the MS clinic may oppose his diagnosis. I am left very confused and upset. I have had symptoms for over 2 years and my diagnosis came as a kind of a "relief", if that makes any sense. On the neurologist's advice I let my work know, told my family, etc. Now I feel like a hypochondriac. My neurologist give me my diagnosis in writing. Has anyone else experienced this or had an MS diagnosis with a normal lumbar puncture? I'm so new to this I don't know what to do or think.
Beginning of the discussion - 5/5/20Can you have MS with a normal lumbar puncture? https://www.carenity.us/forum/multiple-sclerosis/living-with-multiple-sclerosis/can-you-have-ms-with-a-normal-lumbar-puncture-1869
Posted on 5/5/20 9:29 PM
@BusterBluth Hello BusterBluth, thank you for starting this discussion. I'm sorry you're feeling upset, receiving a new and possibly unclear diagnosis can be hard to process. Let me tag some member who may be able to share their experience with you and provide a little clarity.
Hello members, I hope you don't mind that I've tagged you. Have any of you had an experience similar to BusterBluth's? Have you heard of a positive diagnosis for MS with a normal lumbar puncture? Can you share any insights with us?
@Annie1965 @Mamamary3 @Tiva42 @Sdianew03 @Poppy8608 @NewLeaf @WonderWarrior @Kazi114 @Ncalab @Bobbijoe9244 @TaraHoinacki @jaimeChamorro @Taz1153 @emlivh @trina41 @POSYMM @Kupkakejlyn1219
Posted on 5/5/20 11:22 PM
I woke up without vision in left eye, Had a dentist appoinment that same day who was the one you "called it". Told me to go see my Internist, who refered me to Neurologist who ordered the Spinal Tap. Fluid was positive. Don't know if this is any assistance.
Posted on 5/6/20 7:35 AM
My very first symptom was optic neuritis, 10yrs ago. I just woke up one morning and couldn’t see out of my left eye. My eye Dr explained how ON could be related to MS, so he sent me for an mri. At that time, there were no signs of MS on the mri. However, he wanted me to start being followed by a neurologist, in case it showed up later. A couple of years later is when the lesions started showing up on the mri. Around 2016, my neurologist wanted me to have the spinal tap, but I kept putting it off. Finally in 2018, after experiencing a few different symptoms, I agreed to have it done. Spinal fluid showed the number of bands consistent with MS, and I was diagnosed in Dec 2018. I’ve personally never heard of someone being diagnosed without the spinal tap being consistent with MS. I’ve always been told that the spinal tap is the most effective way to diagnose. I’d probably get a second opinion, just to be sure. I hope this helps and you get some definite answers soon!
Posted on 5/26/20 6:56 PM
@POSYMM @Sdianew03 Thank you both for answering, I've been having some blurred vision over the past few years and that's what led me to my neurologist. I've got an appointment for a second opinion this week, so hopefully it will clear this all up. I'm starting to feel crazy and also desperate just for some answers and some relief!