So if you have been following my blog for the last week or so you know I just had my yearly lumbar puncture (LP, AKA spinal tap) and an MRI. Today I saw my neurologist to go over the results and make sure I was ok to proceed with my 14th infusion of Tysabri. So what are the results?
I AM NOT DYING, YAY!!! OK maybe that is a bit dramatic but it’s true, all is well. I am still negative for the JC virus and there is not really any new activity in my brain or spinal cord. Surprisingly there is no real brain atrophy! There are still a lot of lesions but they are not as bright as they were the other year so no aparent development of PML (Progressive Multifocal Leukoencephalopathy). I am relieved to find this out because I really did not want to switch to a new DMD (Disease Modifying Drug) and wait around for the Tysabri “rebound” effect.
Looking at my LP results we can see that I have an elevated ratio of IgG (Immunoglobulin G) in my CSF (Cerebrospinal Fluid). The “normal range” is 0.0 – 0.7 and I am at 0.8 which basically means my MS is aggressively active. This means (since I am not presenting like I was in physical rehab back in 2012) that my current treatment regimen is working great. I think of it like this; MS is a vicious, killer dog trying to destroy my immune system and even though it is still showing up as “super angry” it is not doing much damage because we have a good “leash” on it. Tysabri, Acthar, and now IVIG (Intravenous Immunoglobulin). This only furthers my relief that I can safely continue Tysabri because if I had to stop it I am pretty sure that a horrible rebound would be inevitable (that dog would break loose) even though there are a few medications my neurologist already has in mind for the “just in case” factor.
I ordered my MRI scans on a disk today and they should be in within a few days so when I get them I will upload some images and try to show a comparison to my past MRI’s so you can see the progression of my disease behind the scenes of my skull.
I also brought in my Grandmother’s old MRI’s and reports dating back to the early 90’s so my neurologist could take a look since he recently expressed some interest. They all said “probable Multiple Sclerosis” under “diagnosis” and hearing about what she went through I would say it all made so much sense. The MRI’s showed many lesions and black holes but he spinal tap was negative. For reasons that I believe are stupid (such as “patient has never experience Lhermitte’s Sign” as if all MS patients experience that) they never gave her an official diagnosis. They started leaning towards “hereditary cerebellar ataxia” because she had horrible balance (with a history of falls) and poor coordination just to name a couple of her main symptoms. It was not described as relapsing/remitting but instead as a progressively worsening of her symptoms until eventually she rapidly started to fall apart loosing the ability to speak, understand verbal communication, write, problem solve, etc until she fell into a coma and died in her 60’s. They blamed this on multiple mini strokes which they said explained the lesions. If they were strokes they would be like flipping a light switch. Something works (on) and then it doesn’t (off). It would not have been slow like a dimmer switch. My neurologist looked at her scans and said “oh yeah, she definitely had MS, this is where you got it from”. He also said he new the doctor in her reports, apparently he was big on checking for everything instead of focusing on one extremely probable diagnosis. They didn’t have many treatment options back then but maybe if they got her on steroids she would have lived long enough to start a DMD and still be here today? Who knows?.. Would she have even wanted to see her Grandson go through the same things that she did? Well, at least we finally got some closure and we now know we do in fact have a family history of Multiple Sclerosis.