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. ;-)

Jan 102015
 

I Feel much better than the Neuro says I am

I had an MRI at the last visit and Eriksgirl noted that it was different, my hands bent differently, etc. My neurologist said he could not comment without a MRI to see if therre were changes in the brain causing the change so off I went. When I asked all he could say about that is your MS is progressing. think that was his way of saying I do not have a clue and blame something I have been diagnosed with. The safe non-answer. :-(

Now we get to the glass-half-empty Neuro vs. glass-half-full (me/Eriksgirl). He was very displeased with there being new lesions in the brain. I was pleased there was not an aneurysm from my kids! ;-) We then proceeded to discuss drugs for a while, he heavily prefers the injections. He then said than I need to get on a drug before a lesion puts me in a wheelchair. Later Eriksgirl said she was thinking he pulled a violation for jumping straight to wheelchair rather than a reasonable progressing disability. That seems fair to me and especially true based on past visits.

We also had a talk about Lyme, which he mostly dismissed. I have tested positive for Lyme so I at least had it at one time. He said he could be wrong and was willing to refer to someone else to look at other causes of my lesions. The person who he was going to refer me to was of course a specialist in MS. Pursuing that seemed a lot like going to a Ford dealership to have them discuss all the makes and models out that could best fit your needs, and then you are little surprised when the best one is a Ford. I had to decline that offer as I had in the past.

I left without picking a drug, big surprise, and I told him I would get back with him.

Dec 242014
 

Erik Sitting with SantaI assume Santa survived my sitting on his lap as he was begging me to get off. I took that as a great opportunity to leverage my position and see if I could get a lifetime pass off the naughty list. When he Ho Ho’s ANYTHING, ANYTHING I took that as I was going to be OK this year! ;-)

I hope you have had a great year and Santa treats you well.

 Posted by at 11:47 am
Nov 292014
 

Glass of MilkSo I was browsing the web and I came across an article discussing a “relationship” between drinking cow’s milk and MS. This whole study sounds like it was funded by vegans/vegetarians. On a plus side your eating of cheese, butter, and yogurt is fine.

On a personal note I probably drink 32 ounces (.95 liters) of 2% milk most mornings. In fact if we had whole milk I would choose that, but Eriksgirl picks up the milk. ;-) I do not see any adverse affects from my milk drinking and find it to be a quick tasty breakfast.

When I get called in by a market research group it is usually to talk about MS in some specific context, but a few weeks ago I was called in to discuss our family’s milk purchasing habits. It reality though the study was about a drink I deemed it like Yoo-hoo which isn’t 100% milk but they said is better than milk and taste just like it. I told them to put Yoo-hoo on my cereal it would need to be significantly cheaper because I am too used to regular milk. Then a couple days after the study Eriksgirl points me to a story about Coke going into the “dairy” business, but their “Milk” will cost twice as much. I am not a fan of skim milk but I am sure I will probably give it a try for fun. Maybe Coke can make their Milk beverage MS friendly. :-)

Nov 202014
 
Borrelia_burgdorferi-cropped

Lyme spirochetes

For those who have been infected with Lyme we all owe a debt of gratitude to Willy Burgdorfer. His discovery of the spirochete in ticks paved the way for a cause of Lyme and for treatments.

I was talking with Eriksgirl and I was unsure if I would want my name to be associated with a bacteria/pathogen as an honer. She said at least it was not ebola and I was thinking at least it is not Lou Gehrig’s disease. :-(

Oct 222014
 

I wanted to share some good news,

I just got test results back. My third I-spot test. It is showing that I am improving. The test has been progressively better each time. I started at a very high level of Antigen response in November 2013. I have improved by 90%. I know the retesting is expensive, but so are the treatments.  The test cost $340. I feel being able to see the numbers go down is a huge incentive and mind boost. It justifies the cost of treatment to know I am heading in the right direction.

I still have slow days. But, I am feeling so much better. Seeing the test results absolutely helps with my emotional state. It helps me to know that I am on the right path of healing. I am working on gut repair and overall health. There is a light at the end of this dark tunnel. With God’s help and Immune building therapies and diet, I plan on full remission!!

Oct 152014
 
Coconut Water

The coconut water I found in my fridge that I say has almost no flavor.

I open the fridge one day and I see this carton of coconut water so I ask Eriksgirl. She says that it is very healthy, from what she has read, and she saw it at the store. She goes on to tell me it is in the list of the worst things she has every consumed. Adding to that she said none of our kids liked it either, but she confessed that she probably poisoned the well with her reaction. Now this has me intrigued normally I would not have tried the coconut water but Eriksgirls reaction is a positive mark that it will not be that way for me. I do not understand how Eriksgirl and I can agree on almost everything regarding food but if the taste sickens one of us it will not the other. That is why I asked her about the kids because there is one that mimics my tastes pretty closely and the same for her. Improbable they all had the same reaction so we are back to her poising the well. So I grab the jug and gulp some down. The coconut water was in no way repulsive though it did have a light, somewhat familiar taste that I still have not placed. In no way did the coconut water taste like a coconut which I think is what Eriksgirl was expecting. Coconut water was effectively a win for me the taste was tasteless/OK/tolerable and it is healthy, but I do not expect to ever see it again. ;-)

As an after note I followed up with the child whose tastes most match mine. She confessed she did not care for the coconut water but it was not awful. It was closer to no taste at all, like me lightly flavored water.