Mar 032016
 

Hi again old friend. 🙁

I went to my scheduled follow up appointment with my neurologist to discuss how the copaxone is going. Apparently not so great. I did not expect much so here I am. I expected to get another round of steroids, that I detest, but instead he prescribed physical therapy. Eriksgirl was pleased, and I am just glad it is not steroids.

Physical therapy has begun. I did learn some things that I did not expect about myself. I did not realize that my left leg was stronger than my right. I would assume this has to do with the exacerbation because my right leg was excessively weak under some of the tests compared to the left. Some of their activities are focused on my balance which is good. My balance has never been great, but it has now gotten to a very bad place. I am interested to see how far physical therapy can get me. Hopefully significantly better.

Nov 272015
 
http://pinkunderbelly.com/2011/03/27/when-you-suspect-mrsa/

Picture of what the auto-infuser looks like. It takes an Hr. for it to complete.

First off the steroid treatment went better than any other had gone in the past. I did not have the horrible bad attitude, well no worse than normal, and my tastes were not negatively impacted. Day one of the prednisone went very well. The nurse offered to leave a permanent IV needle in, but it would be in my hand. I told her I do not mind getting stuck, my mistake. Day 2 a new nurse it took 8 sticks before she was able to get a vein that worked for her. This was not the first time tis has happened while I have taken prednisone. Apparently prednisone does awful things to your veins because normally I am a very easy stick. Unfortunately, day 2 was not yet over and because she ran out of IV needles and had to switch to her personal supply of butterfly needles I moved and the injection became occluded. I was 2/3 done with the IV and she asked if I wanted to quit for the night; I think it was pretty clear she wanted to call it a night and not battle getting another IV in me. I told her no I wanted to finish the medicine and two sticks later I was ready to go with a stern warning not to move. 🙂 Day 3 went much better.

In the interim I am supposed to have blood work done to test for the JVC antibody. I tried twice and lost the lab slip. I have to assume that was for the best because getting the lab work done is a waste of money. I do not plan on taking Tysabri or Tecfidera that carry the risk of PML at this time. The Dr. did think that Tecfidera was a good option for me at our previous visit. I do not plan on signing up for the Death Therapy as a treatment.

I will not do the interferons because I think they are garbage, and they did not do much for me. That only leaves Copaxone as drug, or nothing. We look up Copaxone and learn as much as you can without a full understanding of the immune system. 🙁 I also look up how much it will cost through my insurance. The drug is roughly $5,000 a month with a copay of $150. The $150 is doable, but I am on a high deductible plan so on January 1 I would have to eat the $5000! If that is the case it is a no go.

Off to the follow-up with the neuro. A minor exam and in his professional opinion I am walking better. I guess that is why he makes the big bucks because I had not noticed my walking had improved. 🙁 The rest of the brief visit was discussing Copaxone. I told him the $5000 price tag, and his response is that it is a very expensive drug to make it is not all profit. He sounded like a drug shill from Teva. If that drug costs more than $5 to make I would be shocked almost to death. There is obviously good money in drugs so I need to continue my own drug research. MVT with the proper marketing certainly can help a lot of people. 😉

To wrap this all up Teva/Copaxone called today. They wanted to discuss the initial setup with me. I said that is fine, and we got that all worked out. I then brought up their $5000 per month cost. She said that they can eat the first part for the high-deductible plan and possibly the copays from then on. I thought OK as they are gouging my insurance and I am making my insurance more expensive for everybody in 2017. 🙁

As a postscript I was looking at Tecfidera on the NMSS site. I could not shake the BG-12 name it had before it was Tecfidera. I was certain I had written about it, and I had. BG-12/ Tecfidera was a Mold Killer! Who in their right mind is going to take a mold killer as a treatment!

Jan 192015
 

The Neuro thinks I need to be on a medication and it should be an Interferon. It should be fairly well established what I think of the Interferon class as a whole. In the office we got off on a slight tangent when Eriksgirl stated that they do not even know how the Interferons work. His response was because you do not know does not mean I do not know. Normally I would agree but on what level is this drug working? Furthermore, I have to come back to my older post that they just do not work.

I guess I should be fair the Neuro is equally OK with Copaxone. Unfortunately I know very little about Copaxone, and I am not really interested in finding out any more. 🙁

Aubagio

The box for Aubagio looks like birth control piils. Maybe as a warning NEVER GET PREGNANT WHILE USING!

Interestingly the Neuro is categorically against all available oral medications. His reasons was not that they are not effective it was that none of them is safe, and this is from a doctor for there is a time and place for Tysabi. He does, and has, prescribe the medication with varied results. I cannot remember all the oral drug names so forgive me. One patient he was treating the oral drug was

causing stomach issues and I think sleep issues. He did not say the drug killed her, but it did not help. Then of course the death with Gilenya, and if I recall correctly that happened on dose #2 after the supervised dose went fine. I believe the drug Aubagio was of special note because it carries a pregnancy Class X for men too. He said he would never prescribe Aubagio to a male and never to a female before menopause.

Long before this visit Eriksgirl wanted us to go on a gluten free diet. She is sure I would feel better. I agreed that if I ate better I am sure I would feel better. Eating better should help regardless of what I am suffering from, MS and or Lyme. She then purchased The Wahls Protocol which at this point I have only flipped though (and it scared me :-). Good news is the Walhs diet is clinically proven to help with MS, but do not ask me how much because I have not read that part. Eriksgirl, who looked at the book more than I have, agreed we should not start there, that was like jumping way into the deep end of the pool (can I swim?) but we should start with the paleo diet instead. I agreed and we have a friend who has had to be on a paleo diet for a while now, former vegetarian, and it fixed her problem, related to carbs I think, and in the minimum she is a good resource. The thought is the paleo is a segway to Wahls. One baby step at a time. 🙂

A couple addendum here. I will try not to post images of what I am eating. I am not on Facebook, but I hear that is a thing. I also told Eriksgirl that if we are going to get a blender for this new diet it cannot be a Vitamix because the blenders have a cult following. I do not want to be in the Vitamix cult. I think a Blendtec, etc. would be more than adequate. I know a blender sounds weird but Eriksgirl has Vitamix friends, I will not join. 😉