The Culprit to My Current Hell

I finally picked up the disk of my MRI from March of 2015. I had already seen this slide in my neurologist’s office but now I can show you what my brain looked like when this “relapse” was not even that bad! The report states “There is a new 1.6 centimeter hyperintense T2 lesion involving the left cerebellar preduncle” and though there are a couple other new lesions throughout my brain this is the largest and the one causing me all my grief. So really it is the only one I really care about right now. Specifically speaking it is the one causing my dizziness and visual symptoms (like vertigo). Again, this was done in march when thing were really not that bad. Things are incredibly worse now so I can only wonder if this lesion looks any different over 4 months later since it has progressed so much.

Read more

Acclimating to Elevation & My New Neurologist

My friend and I explored the old WWI Hospital where President Eisenhower stayed.
OK, so… yesterday… I saw my new neuro… She was pretty cool actually! She was pretty relaxed and listened to everything I had to say rather than trying to talk over me before I could finish a sentence like most neurologists do as if they had heard enough of that answer. BUT. Here is my problem… I am not sure if this is the situation but this is how it came off; first she asked about the Acthar and proceeded to explain that they don’t really do that there. “Well what you do for a flare up when a patient is on ?” I asked. “, so if you have a flare up, you should come in for a round of ”. “Umm… yeah… that’s not gunna’ happen, if my only option is Solu-Medrol I would rather just lay in bed and let the flare run it’s coarse”. She said OK, took my latest MRI disk, and said she would be right back after she reviewed it. She then came back with another neurologist. It seemed like HE was the one who was actually signing off on the Tysabri prescription (since only a Touch certified neurologist can prescribe Tysabri) but again, not sure if that was the case, that is just how it came off.

So after introducing himself be brought up the Acthar thing. He told me that he doesn’t want to prescribe me something that will cost the insurance company so much money when it doesn’t even work (Remember, for 2 vials/10 days of Acthar it’s around $70,000 vs Solu-Medrol which is about $50 a day for 5 days, so look who just made it clear that Big Pharma is in their pocket?). I tried not to grin but he caught a glimpse. “I can see you smiling so you don’t agree?” I explained as professionally as possible that no, I did not. I had been on Acthar many times and it worked great for me where as Solu-Medrol/Prednisone no longer effected me (plus they shouldn’t really be mixed with Tysabri, one of the Touch program questions they ask you before an infusion is wether or not you have been on any immunosuppressant medications such as Solu-Medrol). He then basically told me he has never seen any clinical research showing that it helps with MS and I told him that I had because my previous neurologist was actively involved in clinical research regarding the use of Tysabri and Acthar.
Now he says something that starts making me a bit mad. He tells me it’s not uncommon for patients to believe everything their doctor tells them as the only truth and that he believes in continued education for patients. Now I loosened the reigns on my smart-ass personality. I told him “I think I am preeetty well educated and up to date on Multiple Sclerosis treatments. I keep an eye on clinical research, my old neurologist always gave me print outs of his clinical research results, I have been flown around the states by pharmaceutical companies to consult about MS patient care, I have spoken a few times about MS, I just gave a lecture to first year Occupational Therapy students on MS at Loma Linda University in California, and I read neurology textbooks as a pastime; so yes, I think I have done rather well at continuing my MS education”.
He paused for a brief moment but I know in his head it was like hours passing him by as his sprained ego tried to figure out what to say. Finally, “Well, if you don’t want Solu-Medrol you are certainly entitled to make that decision”. I smiled, nodded, and shook his hand as if to say “You bet your ass I am”.
My second issue (which is not too big of a deal – I’ll explain why) is that they don’t do monthly blood work and urine tests to watch my liver function and look out for UTI’s (which are common in MS patients with spasticity). Since I have been on Tysabri my blood work has remained stable and I have never had a UTI so there is a good chance that will continue, plus, I am not an idiot; I know if I start turning yellow my liver is failing and detecting a UTI is easier than checking the oil level on a car. 
Once every 6 months they do the blood work and also run the Stratify JCV Antibody ELISA test to check if I am JC positive (in which case I would be susceptible to the PML virus). I know most doctors do the ELISA test but my previous doctor did a newer and much more reliable/revealing test using cerebral spinal fluid (CSF) from an LP once a year. Makes sense, I mean think about it; what do you think can give you more information, blood which runs through your entire body or CSF that pretty much sits around your brain and spinal cord… I’ll let you do the math haha…

Once a year they do an MRI which I am not as interested in as my CSF results because that will tell me how active my disease is along with many other things. Now why this is not too big of a deal for me is this; One, as I said, I have never had liver or UTI issues since Tysabri so I am certain that will stay the same. So it will actually be nice not to go in every month for blood work seven days before an infusion. Two, the ELISA test? They can run it, why not? Once a year I will fly back to see my old neurologist and let him do an LP so I can see what my CSF says and what he thinks about my state of health. I am sure a quick look over will tell him way more than most neurologist could determine with all their fancy tests! $300 a year is worth it to me to find out if I am dying or something horrible (Haha…)

Read more

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!

Read more