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.

Upcoming Neuro visit this week.....

and I have loads of questions for her! She may not be very happy with me either! I have not been able to receive my IVIG treatment but I have found out it is their fault and nothing much I can do about it. They accept my insurance, but are not willing to accept the negociated rates on the treatments. What is that all about?? She is the one who was pushing this treatment. I don't know if I want to go back on it now.....I think I have been feeling pretty good since I have not been on it, but I may just want to do it once a month instead of 2 times a month like they had me on it before if I do go back on it. I still have not been on the Betaseron since around Christmas. I had bloodwork drawn last Friday so I will see this next week what my labs look like being on the minimal meds I have been on for the last month. I have a feeling things are going to look pretty decent.

I am also planning on asking her about getting an MRV done on me since that is about the only test I have yet to have done and I am not hearing anything from the vascualr doctor at this point. i had really hoped he would be the one to follow though on this for me. I really like him and think he would be a great doctor to do work with CCSVI patients.

I think I may have cracked my tailbone yesterday at a skating party. I am in pain and think that will be mylast attempt to skate. I am way to old and uncoordinated to do that like a teenager any more! My rear end HURTS!! I also tried to take out my left knee cap and bruised it up pretty well falling straight on it. It is a little swollen today.....hopefully I can get back to my treadmill walking tomorrow without any issues!

To treat or not to treat.....

is that the question?? I have been off all of my MS treatments since 2009....sounds like a long time, but only since the end of December. I have not started taking my shots again, and I have not been back to IVIG due to issues with insurance. I reduced my meds in all and I only only taking meds to avoid my migraines, those that keep me sane, and the thyroid meds. I have actually NOT had a headache and I have felt pretty decent! I have only experienced a little fatigue but that is almost always there. I did just start trying to go to the gym and walk the treadmill every day (well 5 days a week at least) and so far I have increased my distance by 1/4 mile a day and added a little more speed and incline to the workout. I did 2 miles today....not bad since I have done NOTHING as far as working out in the past year or so.

We are going on a cruise in March - I am ready as we are going to Roatan, Honduras. I have been wanting to go there and we finally booked! WOOOO HOOOO!!! We did not get to really do a vacation this past year as I had the 2 surgeries and it was just a lot going on with the IVIG starting too. I am ready to go - hopefully it will be a great family trip!

CCSVI....(cue the music)

CCSVI, No, NOT CSI.......it is not a new crime show on the TV. It is a medical problem I have been looking into recently that may be a root cause or source of problems for MS sufferers. There is a study going on in Buffalo, NY, that I have signed myself up for in the hopes of looking further into the problem of venous narrowing in the drainage to/from the brain and if there is any possibility that this could be part of the MS experience I am having. I have suffered with migraines that have no source for so long, that who knows, maybe just maybe this could be "IT". I sent my vascular surgeon a message and some info on CCSVI asking him to look into this and see if he would be interested in testing or helping look into this further. He told me he would look into it some more but I have not heard anything back from him yet. Every day there is more and more in the news about the research and possibilities and it looks promising - this could change the whole MS world. I do not think "pharma" world is ready for that.....whatever would the money hounds do? I mean IVIG treatment are 100K a year my insurance is paying, and the shots are 30K....not to mention all the doctors who get money from the frequent visits. WOW!

In the meanwhile I am also waiting on another series of bloodwork results. After seeing the hematologist, he suggested that I had been exposed to Hep B. I have never had any Hepatitis serology done that I know of, so this was news to me. He did not ask if I had ever been vaccinated for it, which I had been, back in the days of being a nurses aide....years ago. So I went in to see my GP, Dr. V, as he is more familiar with my history of low WBC and things of late and I wanted him to see this latest bloodwork series. He decided to run another series as part of what he would look at was missing from the hematologist and he did not think there was enough info there to make a diagnosis of infection. I am still waiting on the results from that. He said it could take a couple weeks to receive that info. He aslo said he would not worry about the ANA titers and that the levels were not that high to cause worry to him.

I have taken myself off Betaseron for a few weeks to see if it may be a main cause of the WBC being low. One of its side effects is "possibly" lowering the WBC. So, I decided I would stop the shots for a few weeks and let my system clear out and see if that made any difference in my bloodwork. I have been off the shots for about 3 weeks and when I did my last bloodwork it had been about 2 weeks. It will be interesting to see if there is any change......I would love to not take a shot every other day again, but not because it is causing my body problems. I would rather it be due to a cure from the CCSVI or something like that! :)