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!

Nov 182015
 

ChoceurDark85CocoaYes, we all wish! :-) There is a study to see if chocolate can easy the effects of fatigue. Good news you do not have to wait for the results; you can try this yourself! 😉

Before I even read the article I went to Eriksgirl that they are doing a study of chocolate as a treatment for MS. In light of that I encouraged her to run some trials of chocolate on herself to see if it improves things for her. She was fully on board. What can you not fix with chocolate! 😉 As I walked away she was unwrapping some black chocolate with a smile on her face (I guess it worked for her).

I proceeded to read the article and the key is the flavonoids. That is great for my wife and her “love” of Moser Roth 80% Dark. I detest dark chocolate, and I am pretty certain my peanut M&Ms do not contain significant amounts of flavonoids. I suppose we will have to run our own study here and pit Eriksgirl and Moser Roth vs and me with peanut M&Ms. My hypothesis is that there will be no losers. 😉

Oct 282015
 

Maybe not friends, but we know each other well. :-(

A few weeks ago I started experiencing some slight tension in my right calf. I wrote it off for a while, but it progressed to decent pain when I was walking. This was a first, and then I had no choice but to slap the label of spasticity on the issue. I tried Motrin to see if it would help with the pain when walking, but no effect. Fortunately, the tenseness not stick around much longer and is gone now.

While I was having the spasticity problem, and persisting now, is a small balance problem. I have not fallen, but I am glad for nearby support. I am especially thankful for the handrail next to the stairs. This is improving but still lingering.

Apparently, when my “old friends” came over they invited someone new. This was especially disappointing on a few levels. Who wants any of these types of “friends?” I have gone quite a while without any issues and even longer without any new issues. Very disappointing.

The new issue is a gait problem. Difficult for me to describe. I will see if I can get a video and post that for a follow-up.

May 142015
 

MiconazoleIf so I vote for Monistat 1 and not 7! Was he just bored and going through the medicine cabinet to see what works?! Lots of questions! :-)

Regardless, I was reading and I saw this article (Athlete’s foot drug in the article, but I find Monistat more plausible :-) ) about anti-fungals and MS. I like that they encourage growth of new myelin growth, but how they came to discover Minostat encourages myelin growth I am certain is an interesting story. I guess the best part for me was the quote “He says the formulation of the drugs would need to be changed so that they could be better targeted to the nervous system where MS strikes.” I guess most people do not want to eat Monistat?

Duck faceThis makes me think of the old joke about Preparation H and the instructions: “do not take orally.” Sure, do not take orally seems like an obvious, dumb instruction, but here we are. Now this “Monistatg Cure”  has me wondering a lot more about the duck faces” that are posted on facebook. Facebook is certainly a place where people like to post there shame. Maybe some of those are pictures of people who took Preparation H orally?

The remyelination did make me think of the Anti-Lingo drug. I looked that up, but no new and exciting news. No surprise. I think we need to hit phase 3 trials before we get some answers.

May 072015
 

Zevia ColaSo today Eriksgirl came in and said I want you to try something. Made me nervous at first that it would be some weird food. I quickly saw a blue six pack go into the fridge and I correctly assumed that was what she was talking about, and I also correctly assumed it was not Bud Light. She said that she picked up a Coke replacement, Zevia, at Sprouts and she wanted me to try it. I had just read how Pepsi was changing the sweetener in Diet Pepsi to help stop their shrinking demand. Pepsi swore you could not tell the difference although I never liked Diet Pepsi.

We were having lunch so Eriksgirl wanted me to try on right then. I poured it over ice so it would be cold, but still did not like it. In fact I could not discern much of a cola taste. My son on the other hand said “This tastes just like a Coke.” I came back later and tried again and I think my biggest problem is getting over the taste of the sweetener, Stevia. Eriksgirl agreed that is probably the case, and it does take a while to get used to. Eriksgirl also noted that she had gotten used to Stevia a while ago so the Zevia was fine for her and she liked it. I personally deemed Zevia as failure as a coke replacement because it would require me investing time and money into acquiring a taste for Stevia. More than that Zevia is significantly more expensive than Coke.

That brings us to why did Eriksgirl pick up Zevia for me? I do drink Coke every day, and that is obviously not a fantastic choice. Eriksgirl was looking for something healthy that could replace the Coke. It even says on the can vegan, kosher, and gluten free. That said I would hope a normal Coke is vegan and gluten free. :-) I told Eriksgirl it is not worth it and when our new diet get going I will just drop it. The Zevia as a healthy choice, for whatever reason, made me think of smoking. Then a guy dressed up as a cigarette to make you associate bad things with cigarettes. Maybe that is another idea for Eriksgirl, have someone dressed up as a Coke can beat me up so I associate bad things with Coke. (with knocked out teeth) See I told you the Coke was going to rot out your teeth. :-)

Apr 252015
 

There’s a nap for that.

Lately I have been battling fatigue well beyond what is normal, and what I can blame on the kids. I think it is just a normal sickness because Eriksgirl is suffering from it too (maybe it really is the kids :-) Kids are always bringing stuff home so hopefully that is all this is.

All that aside Eriksgirl may just be tired from the “sleep curse” she has had as long as I have known her. I asked her if someone put a http://www.atletipercaso.net/8105/storie-yolanda-gail-devers-la-volonta-oltre-la-malattia#voodoo spell on her and she did not know. As I was thinking way back to 1993 there was an incident for her where there was a lady that came into Grandy’s and Ike, the manager, insisted loudly, I was not there, “she is a witch!” I was told she had long nails, I think longer than Gail Devers (Ike probably never liked Gail Devers either). Maybe it was the witch and she cursed both of them! 😉

Apr 122015
 
Eriksgirls picture of me showing Anisocoria

Eriksgirls picture of me showing Anisocoria

It is not a tumor! 😉

Eriksgirl has uses my eyes as her personal gauge to see if I am near a seizure. Maybe that happened for her after my last seizure where my pupils were very different sizes, like someone with a concussion and this was before I hit the floor.  I told her they were not off by much when she showed me the picture.  She exclaimed they should be equal. :-)

What I do know is that the Anisocoria (different pupil sizes) is relatively new for me, and not something I have had my whole life. This would make the Anisocoria most likely caused by Lyme, or MS. I think for either of these it would point to optic neuritis but my eyes are checked regularly (not to say that optic neuritis could not be missed). Other than that I have no great ideas other than a tumor, which I am pretty sure it is not that (recent MRI :-). (or I keep getting concussions, might explain my repeating myself so often to the kids)

I guess it will be something to discuss at my next neuro exam. I cannot remember the last time he examined my eyes. Fortunately, my optometrist has a really nice computer/camera that takes a picture of the back of my eye to look for problems. He is not a doctor, but he regularly checks the optic nerve.

Feb 142015
 

designated_drivers

I suppose this is my gift to Eriksgirl since she has been my “designated driver” during this period. I think she is the one most excited about my driving! 😉 I am not 16 anymore and driving is not fun, it is just a chore. Maybe I just need something more fun to drive, but that is not for the near future. If only I had a little more money for a professional chauffeur or valet.

Alarms have been set as reminders for my epilepsy medication. Hopefully all will be fine now.

Jan 222015
 
The definition of seperate but not equal

The definition of seperate but not equal

I was in Tom Thumb the other day and while washing my hands I read the normal employee hand washing signs. Both of the signs are the same except the one in Spanish at the end they tack on a “muy bueno” (very well or thoroughly). There are a lot of questions: Do people whose primary language is Spanish not normally wash their hands thoroughly and so need to be reminded? Do they think that people whose primary language is English always wash their hands well and do need to be reminded?

It seems incredibly implausible that this wording was not intentional. Every restaurant and office supply store I have been in sells signs that say the exact same thing on both. I also find it incredibly implausible that I am the first person in the country to notice this (I assume these are the corporate standard signs).

I went and spoke to the manager and right away he let me know he did not speak Spanish (in Texas!). I explained the signs and then the add on at the end. He went on about how they are required by law to have them <blah blah blah> . He emphasized that both say all employees must wash their hands so what is the problem? I told him they are not the same and one or the other needs to be changed to match. I left with him saying he would contact his boss and HR, but this is a big issue so it needs to be addressed from the top down.

I guess this is what you get with your uppity, over-priced grocery experience.

Not acceptable! :-(

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. 😉