|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 DO
you do for a flare up when a patient is on Tysabri
?” I asked. “Solu-Medrol
, so if you have a flare up, you should come in for a round of steroids
”. “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…)
Anyways, I think it went as well as I could hope. I got spoiled with a neurologist who was a super genius and went above and beyond in testing often and staying active in clinical research and the latest news about MS so now I have to acclimate to a typical “MS Specialist”. I think it will be fine, I’ll just miss the blind trust I had with my previous neurologist.
Speaking of acclimating, the altitude difference! I used to be at about 1,200 feet (365 meters) and now I am more around 6,000 feet (1,828 meters) so I am still trying to get used to less oxygen. I walked a 2 mile round trip today to the store (which should have been a breeze) and I felt like I was going to pass out when I got home! I can hardly maintain a conversation for 5 minutes before loosing my breath! I also notice my cognitive function has been pretty bad as well as memory recall. But hey, a couple more weeks and I’ll be gold! Besides, it’s so worth the temperature change! 85 degrees F (29 C) is so much hotter in southern California than 85 here. The other day it was actually 88F and I was able to sit on the back patio and work on my laptop because there was a cool mountain breeze. While at the MS center, my friend seriously told me he should have brought a jacket! By evening, a thunder storm had rolled in; lots of lightning, a bit of rain, and about a minute and a half of some heavy hail! WEATHER! I forgot what that was in California haha!