Upcoming appointment...

Wednesday, with the NEW doctor to see about the CCSVI or possible CCSVI and what he thinks of my MRV. They called me today to set up the appointment and told me they did not think there would need to be any further testing done at this point. I am hoping this is a good thing in the sense that they have all they need and he can see everything clearly. Otherwise, I feel like maybe he is bringing me in to just tell me there is nothing there and to give me back my discs I took to him. Hopefully they would have just mailed them back to me if that we the case. Anyway, I guess in a few days I will see.

Add another one.....

to the growing list of doctors. Does it ever stop? I guess when the insurance runs out, huh? I am blessed to be able to go see these doctors when I need to though! This past week I saw the new rheumatologist and had more bloodwork done there. No real change in info compared to any other rheumatologists I have seen. He was a bit more personable though. Basically, I have an elevated ANA, which is a soft sign for Lupus/SLE (and possibly other things). I have low blood counts, both red and white, which is another soft sign of Lupus/SLE. I have hair loss (been experiencing this for a year now) but I am not going bald, which is a bonus. I have some other minor symptoms but nothing that he can make a 100% diagnosis for, or against Lupus. He wants to continue to watch the levels and see me back in 3 months. Basically I am where I was before.....but with another doc to add to the list and another part of town to visit in the future. This one is in far south Irving.



I saw my vascular surgeon(who I think is AWESOME) finally in regards to my MRV I had done. He seems to think there is something to the MRV to be looked into in terms of CCSVI. The neurologist looked at it and said all is normal - but she is looking at it based on info pre-CCSVI research. She has basically said she personally has not looked into CCSVI and seemed pretty dismissive about the whole possiblilty. I personally think that if there is something out there that could be a cause/issue/resolve for my MS patients (if I were a doc) I would be looking into this further and seeking more info to help them, especially when they are seeking it out through you and doing this research themselves already. Needless to say, the vascular surgeon even made the suggestion that it may be time to look for a more proactive neuro. I think I am in agreement on some levels. I just hate to mess up my treatment as it is at this point. Although, now may be the perfect time as the treatment (IVIG) is actually going through a whole new doctor whom I have yet to meet......hmmmm......time to contemplate some things.

Anyway, I ran my the MRV/MRA discs to yet another doctor that I will (hope to) be adding to the growing list of practitioners. He is a vascular specialist who is seeing patients with MS, looking into CCSVI. He is actually at UT Southwestern, which is a trek, but closer than anyone else at this point. I am very interested in seeing what he has to say. He was out of the office some last week, and I hope to hear more from them this week. I want to get this on the move, as I have been trying to get anywhere with it for months now. I have yet to hear anything from the Buffalo research and who knows if I will ever.....

Possible....

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.....

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 low....so 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.....

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 www.wheelchairkamikaze.com. 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!

Diet/Cleanse

OK, so this week should be pretty interesting for my love and myself. We are going to attempt a 7 day diet/cleanse that is pretty much all fruits and veggies. Check this out.....GM Diet. I do not think I will have too much of a problem with it, I almost did the same thing after my Gallbladder was removed just because it was all I felt like eating. We know someone who did this and they lost 18 pounds and have kept it off!! I would like to lose about 10 at least, as a boost, We are getting back to our workout this week after being sick all of last week as well. If all goes well, I may do this once more before we leave for our cruise in March. I will try to keep up on the blog daily to track my progress. I just ordered a new dress for the cruise.......hopefully this will help how it looks when it comes in! :)

I am off to go shopping for loads of produce today as our house is bare.....gotta make some wonder soup as well. Go veggies!!!

February 2010

is off to a wunnerful start! I have gotten sick.......a cold has finally done it. I have pretty much been WELL, not ill, without sickness, sans illness,.......HEALTHY......until now since last June when I started doing my IVIG treatments. This was great! It seemed like every time I turned around I was getting sick from something prior to that, and it would take forever for me to shake whatever it was. Finally the IVIG gave me that boost I needed and I got over the immunity issues....until New Years rolled around. Happy New Year to me......new insurance and difficult to deal with companies cause issues in continuity of treatment [when there should be no issues]. So I have been without my IVIG treatment, that I would normally receive every 2 weeks, since December now. This is what has contributed to me getting sick. I was scheduled to start back up with a new infusion center tomorrow but due to getting sick, I have had to put off this treatment until Friday. I hope everything works out fine with this new infusion center and there are no problems going forward.

Tomorrow I also have an MRV scheduled in Lewisville. This is in hopes to find out something relating to CCSVI (or not) and maybe get an idea if this is something worth looking into anymore or being done with altogether. Right now I am still on the list for the study in Buffalo but those people are so backed up, who knows when it will ever come around if it even does.

My bloodwork is still all over the place. My white blood cells are still low......and I have limited my meds to the bare essentials to see what that will do, if anything. I am beginning to think this is not related to the meds.....but I am not sure. I will have a new set of labs drawn right before the treatment this week and we will see how things look from there.