Monday, May 09, 2016

Had a bit of a set back with starting the Lemtrada. My shingles titer came back to low. So, I had to have a Shingles vaccine. Because it's a live vaccine we have to wait 6 weeks now to start. Looks like the new date will the the week of June 20th. I was very disappointed. After psyching myself up to actually take the drug it was very disappointing. Now I'll have to go through the process all over again. I found a great support group online. Most of the folks there have had a really positive experience with the drug. It's NOT a cure, but it's supposed to stop the progression of MS. Some folks actually get function back. It would be great to walk like a sober person instead of having a gait that makes me look drunk! Would also be nice to lose the motorized wheelchair and cane.

Tuesday, April 12, 2016

Time goes on......

Wow. I can't believe so much time has passed since my last blog. Still fighting MS, still walking, albeit with a cane. Sometimes I'm in the chair depending on the day.

Since my last entry I've moved across the country. We now live in TN. The weather is better here for me. Yes, it can be humid in the summer, but the temperature is rarely above 90 in the summer. Unlike CA.

I've also been on Copaxone, Tecfidera and Tysabri for my MS. I've become steroid resistant so steroids no long are effective during exacerbations. The most recent drug I was on, Tysabri, was actually one that I did the best on. In the 9 months I was on it I only had one relapse (a nasty bout with optic neuritis). Unfortunately, I've had to discontinue it because I am no JCV positive. So, no were considering Lemtrada. A drug that on the surface sounds wonderful. A five day run of IV medication followed by a YEAR with nothing, then at one year a three day run of the IV medication. Then your done. Finished. No more medication. Sounds like a miracle drug for MS doesn't it?!?! Pffft, until you read the side effects. Unfortunately, it seems that this particular drug is all that's left for me to try. SO, we're researching and waiting to hear from the nurse that will be assigned to me. We haven't made a decision. (I say WE because my husband's input and thoughts are just as important as mine are during this process). I'll keep you posted. Promise. If any of you have tried Lemtrada I'd love to hear from you.

Wednesday, March 28, 2012

Busy Day

Just wrapped up a busy day. Shopping for an anniversary gift for hubby, then the last night of Lent bible study. Rushed home to run protocols. Still learning to balance running programs with life. Missed my 1p.m.  time as I wasn't home. So I got home at 4:30, ran a program, went to home and just finished running more programs. Payng for not keeping to the schedule. My back pain is worse than it has been for the past week :(  My own fault though.

Thanks to Muff for the author suggestions! Wish you could make it to Texas. Hopefully someday this treatment will be widely available to everyone AND covered by insurance! I know it's turned out to be an absolute blessing for me in regrds to my pain, sleep and MS symptoms. TIme will tell if it helps prevent exacerbations....but you can bet I'll keep you posted!

Tuesday, March 27, 2012

Another Day is Done

Another day is drawing to  close. I just finished running my last protocol of the day. The new machine is working wonders for me. I wish you each could come over and try it! I have found it takes care of my left leg neuropathy better than any dose of Neurontin. My right knee pain is almost non-existent. I'm sleeping MUCH better and even my back pain is more manageable. 

It's doing a great job of managing the SYMPTOMS of my MS. Of course the real test will be determining if I have fewer exacerbations while using the machine. I've been experiencing exacerbations about every 4-5 months. I just had one right before I went to Texas to get the machine.  Wouldn't it be wonderful if the machine is actually able to help control the actualy disease process of MS. Time will tell.

I'm still learning how to juggle my everyday activities and running the machine every 4 hours. Seems there just aren't enough hours in the day to get everything done.  It can be a bit frustrating to have to plan everything around running my protocols, but the benefit far outweighs the frustration. 

Another thing the machine forces me to do is RELAX. It means that at least three ties a day I am forced to be still for 1.5 hours. I Read, doze or watch TV while I'm running the protocols. So, if anyone has read any good books lately let me know!

Sunday, March 25, 2012

Home Swwet Home

Yeah to being home! Although yesterday wasn't much of a day of rest. We had too many errands to run after me being gone for a week. Today is Church and more errands. At least I was in bed early last night and got to catch up on some sleep.

Learning how to manage my time with running programs three times a day. Set the alarm for 6 this morning so I could get one program in before 8 am mass. Will run another when I get home and before I go to Vestry. Then we have errands to run. So it will be evening before I can catch up.

My knee feels great. Minimal if any pain there at all. My back pain is there, but much more tolerable than without the machine. My balance is better as well. I'm seeing huge strides as week one comes to a close. Can't wait to see how I'll feel at the end of next week!

Saturday, March 24, 2012

Travel Day

Yesterday was my travel day home. So, no time to blog. Left the hotel at 7 am Texas time and didn't get home till 3 am Texas time. LONG flippin day. Only programs I ran all day we're the ones at the clinic in the morning. Needless to say by the time I got home not only was I totally exhausted, but hurting as well.

Ran programs as soon as I woke up this morning which helped take the edge off the knee. Going to work on the back this afternoon. I''m so glad to be home! I'm very tired today so I don't have any plans to do anything but rest.

Will keep everyone posted on how the tretments go now that I'm home!