Monday, March 15, 2010


L'hermitte's sign again......random tingle in my middle fingertips and some numbness in the hands when I move my head downward. Been a while since this has happened and it started again last night. Hmmmmm.....

Wednesday, March 10, 2010

My neuro visit today....

So I went to the good old neuro for a follow up today and as most times it was a long wait. It was a quick visit and we covered lots of info rapidly. My WBC & RBC are still low, I am pretty much anemic at this point for some reason. I have to folow up with the Hematologist again to see what he thinks is going on. My B12 levels are low....way she started me on a 4 week series of shots to see if that would help. We decided for now I will stay on IVIG as I have been and keep watching the blood counts monthly.

My ANA levels are still high so she wants me to see a Rheumatologist [again] even though I have been to several over the years and it has seemed to be a waste of time really. I am not totally on board with the idea but I guess I will go for the sake of getting her to stop bothering me about it. At least this way, I can say there, I saw one.

I have had a headache for 3 days straight now - no fun I can tell ya that much! I am not sure where this one is coming from either, but there is nothing that is touching it. She gave me a steroid prescription today so hopefully that will help.....I have to feel well, the cruise is around the corner!!

Ken was reading something the other night that the Wheelchair Kamikaze had written and it touched a little on Lyme Disease. I have not really mentioned much about LD lately on my own dealings, but I have been discussing it on the flip side in Facebook and email world with several people who have found me through this blog in the past few months. It {what Ken was reading} made me wonder, as every once in a while it comes full circle, LD TO MS, and makes me start thinking about the possiblities once again of WHAT disease(s) DO I HAVE? Many people think that MS is linked to an infection like B. Bergdorferi (spirochete) going untreated longterm thus causing the issues many of us deal with later in life, and are eventually diagnosed with MS. Some people are never diagnosed with LD, but could it be that they were never tested correctly? It may be that we will never know....AND it may be a wild and weird coincidence. I have both diseases, unfortunately, but I deal with the day as it comes for the most part. I am blessed - and I know things could be worse, even if they could be better!

Well, I got the MRV back and I am not sure what it shows. I do not think there is enough info on it for my doc that was interested in looking into this further. I have put my name in for another study in Buffalo to see if I can be looked at there. Maybe it will get things moving....I am interested to see if there is any weight inthe CCSVI theory on my part for MS. Here is one of the scans.....

Monday, March 8, 2010

Gearing up....

for a busy Spring. We are about to head for a cruise!! Yea!! I cannot wait. We have not had a family trip in a while so it should be a good time. Also it is finally starting to warm up some around here and we are able to get out of the house a little bit. Looking forward to some field trips for the girls for school and we will all be glad when pool season is back in swing this year!

Today I have been dealing with a major headache. I hav experienced a few lately and I am not sure if it is the weather or that I finally started back on IVIG and my body is just not used to the meds since I had been off them for a little while. I do not like having headaches, it makes it hard to even look at the computer screen which really messes with my Facebook time as well as my work, and some homeschool stuff we need to do at times. Priorities, right?

The new infusion center is not my most favorite place in the world. The are understaffed and slow. The place is one giant room with many chairs in it for everyone to sit around and stare at each other for hours. Totally not my cup of tea. I miss my old place where I was generally in a private room and had to only deal with the ocassional nurse. I do appreciate my headphones and wireless internet - and working from wireless connections. I can immerse myself in hours of that or watch TV online and not be bothered by anyone really. Usually I work as I can do lots of this while there, and get paid while paying the docs. It really is no where near an even trade I tell ya!

Well if you are reading this and want to check out another MSer's blog that has a very different perspective then I do, check out He has somepretty interesting stuff on his site!

Oh Yeah, Ride for My Bride 2010 is around the corner..... if you feel led to donate to my hubby for this year's Bike MS 150 Frisco to Ft. Worth, please click the link above and send a little cash his way! He is trying to obtain a leader's jersey this year so every dollar really helps!