Sunday, January 24, 2010

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!

Monday, January 18, 2010

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!

Saturday, January 2, 2010

CCSVI....(cue the music)

CCSVI, No, NOT 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! :)