Friday, April 30, 2010

Oh how quickly I forget

It is times like these that I am reminded of how quickly I blow off my side effects from Avonex. Oh how I wish I was not out of Ibuprofen at the office. I only had one left; how woefully inadequate that is / was. At any rate, the flu is in full effect. Chills, my joints ache, no my whole body aches, I feel terrible. Bed is calling my name and there is not one handy. How unfortunate.

So for the record, the side effects are no less than they have ever been, the Ibuprofen routine is the only reason I can function with these shots. How I wish that I could get in that drug study.

Tuesday, April 27, 2010

The Walk and other stuff

Well the MS Walk this last weekend was great. There was a huge turnout which is always a good thing. Like last year it was a very difficult walk, but I made it through. It was fun to have so many show to walk with me (Thanks to all of you).

I just got my prescription filled for Ampyra (the walking pill). This is day two. No changes that I can tell yet, but then again, I'm not sure when I should see results.

I still have not heard from the drug trial a true yes or no. So far it is up in the air with whomever decides these kinds of things.

Symptom-wise things are very much the same. Since we are going to go on vacation in early June, I may try to get a round of steroids in beforehand to make the trip a little easier.

Friday, April 16, 2010

Shots on Thursday mornings

I have switched up my shot mornings all over and timing seems little to matter. I have settled on Thursday mornings and while it makes for a terrible Thursday, it doesn't interfere with working out or anything we may want to do on a weekend. It seems to be the best option.

I got a call today to start Ampyra (the new MS walking pill). It is covered by my insurance and so I may be able to start that soon. The word is still out on the clinical trial, and today was not a good day to call them. I will do it Monday morning and see what happens. I need the answer so I know whether or not to refill my Avonex.

Yesterday was a particularly hard day for me after the shot. Felt worse than I have in a while. In fact felt bad enough that I never ate dinner. Today I'm feeling closer to normal and that is nice.

Friday, April 2, 2010

Changes in shot timing seem to have little effect

It has been a few weeks since my last pots and I have tried my shots in the morning, evening, small and larger doses of Ibuprofen and little change takes place. Certainly more medication has a better result for some symptoms (fever) but my fatigue the next day is still crazy and I feel terrible. This morning was a prime example of how bad I can feel when waking up. Felt absolutely horrible, fever, barely enough energy to stand in the shower; I nearly fell down twice. Getting dressed as an adventure in that I normally sit, but just raising my arms to put my shirt on took a lot of effort.

Now I'm at work, have had two cups of coffee and the world is a little better. Thankfully I can sit here and I don't have to be up and around.

I met with my neurologist about two weeks ago now and he tends to agree with Dr. M and me that the Avonex is most likely depressing my immune system. I am looking into getting in a drug study because of my side-effects. It is still up in the air as far as approval, but they are verifying that I qualify. I may start LDN (low-dose Naltrexone) as I have a prescription for it now, but have not yet had it filled (it has to be compounded). Others have touted its benefits but it is purely anecdotal. I'd like to see what it does for me.

So far I have had sponsorships of over $1000 for the 1020 MS Walk. I hope to get over $1500. I have 3 more weeks to get donations in. Please consider donating or walking with us.