Yearly MRI and LP Went Well, IVIG Started

So I totally forgot to mention that I had my yearly MRI of my brain and spinal cord done on Friday, February 28th. Just routine stuff for me although when the technician pushed the contrast material into my IV I think he pushed it a little too fast because he blew a vein and it burned so bad! I used to think solu-medrol hurt when the IV infiltrated but that is NOTHING compared to the contrast material! I felt like I had my hand in ice water and then hit my finger tips against cement as hard as I could (I have never done this I just imagine), it was so painful! Then when I had just 7 minutes to go the MRI machine had a glitch so they had to reboot the whole thing which took about 15 minutes… So I laid there, my arm in pain, waiting for it all to reboot so I could finish my last 7 minutes. So That was fun…

The LP (Lumbar puncture; AKA Spinal Tap) on Wednesday went much better! My neurologist is such a pro; he says his LP’s are “better than sex” lol! He felt for the right spot with his fingernail, numbed me up, and finished everything before I even realised that we had started; NO PAIN! Then he laid me down for a while, they drew blood, and I was done! As soon as I got home I laid down in bed and started drinking tons of water while I watched a movie (Thor; The Dark World – it was… entertaining I suppose… I am still all about Ironman!) and 24 hours later I was up and moving putting together a bench I had just painted. A few days later and still no headache! I went for a walk this morning and tomorrow I will resume my much needed stretching and exercise as I have been in so much pain the last few days from laying around and sitting at the computer!

My point is this; By mameticulouslyollowing my doctor’s instructions on laying flat and drinking water I had no headache unlike my previous LP’s where I did not follow these instructions as carefully. It’s funny because one of the top search results for drinking water and resting after an LP is an article by NCBI who claims that drinking fluids and laying flat after an LP to avoid a headache is a myth. Whoever wrote this article has CLEARLY never had an LP done before because I am sorry but this is no myth. It really does help (in my opinion) to drink lots of fluids (I think I drank about 5 bottles of water, a cup of coffee, and a large lemonade all while laying flat in bed before going to sleep) because as I said, I did not do this as carefully before and I got the headache. The first time I really did not do any of it at all and 1 week later my head was still pounding and I was looking into getting a blood patch done. So, if I were you and you were contemplating the different opinions on this matter, I would play it safe and just drink the fluids and lay flat for 24 hours.

Moving on; Yesterday I started my first round of Gammagard, AKA IVIG (Intravenous Immunoglobulin). I have done this once in the past (I think it was in June last year) and I did not like it. It is a 6 hour in-home infusion and the nurse gave me Benadryl which knocks me out dead. At the time I was just trusting my doctor and doing what he said without doing research on the medication first for a change. I didn’t know what IVIG was or how it worked but he wanted me to try it so I said “ok”. After the infusion I felt no different (thinking it should be like Solu-medrol where you feel it working right away) so I never scheduled the next infusion. Now I know what IVIG is and how it works and my neurologist explained that it usually takes around 5 infusion to really do anything noticeable so here I am, yesterday was 1/5 of the scheduled infusions that I will be doing once a month where we will then see if I am doing any better or not. Note; I am still on Tysabri, I am doing both treatments! So besides some issues with the stupid IV pump yesterday went well; I had my computer all set up where I was getting infused so I got lots of work done while the medication slowly dripped into my arm using only the force of gravity (we gave up on the pump).

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