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. 😉

Aug 242012
 

That time of year for another neurologist visit. You would think it would be boring since all I am treating is my seizures. Since I have not had any seizures the medicine is working and I should just be in and out. That was not the case. I am not interested in treating MS at this time but the neurologist take is upon himself to do some neurological tests, etc., maybe so I get my moneys worth. 😉 Continue reading »

Apr 062012
 

Teva is rushing to get an oral MS drug to market, and their drug is about as effective as a sugar pill. Today I read an article, although a little old, taking the stand that Laquinimod is an effective oral treatment for Multiple Sclerosis. I think the author is a shill and it was basically a paid advertisement. On the other hand Laquinimod while probably being a very expensive sugar pill will hopefully be a lot safer than Gilenya. I have no doubt that Gilenya is effective, but it may kill you in the process. Laquinimod sounds like a drug you can feel safe taking.

Also, I am apparently in the wrong business if you can sell sugar pills to people at exorbitant prices to make them feel better.

Jan 212012
 

I see in the news that the oral Multiple Sclerosis medication Gilenya appears to be tied to eleven deaths. It appears one person may have died after the very first dose. If there is a plus side than it sounds like it is a much more peaceful death than Tysabri’s PML. There definitely seems to be a correlation between an MS drugs efficacy and risk of death.

I still stand by my previous post that life is more than just avoiding disability. No one wants to be disabled, but I do not want to risk my life to avoid disability. I have also heard the statistics argument that death is not that likely on these drugs, but I do not want to play that crap shoot. Good luck to those who take these drugs.