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! :)

Explosion or Implosion?

I do not know what is going on with my body right now but I do not appreciate it for sure. I have had a headache for days now and it still continues. Driving yesterday was strange to say the least. I literally had to call Ken and ask him where something was because I could not remember. That is so not me....I do not get lost or have problems with locations or directions. I had to stop and rethink about where we were actually going after we had been driving for a while as I had totally spaced it and did not remember where we were going. It took a minute but it kicked in and I was fine......I kinda got spooked for a minute thinking about the "what if's" that could happen, but I had to get past that and continue on with what we were doing. I was all over Dallas all day yesterday as well. I had to go from Aubrey to Sachse, to Carrollton to Lewisville, to Irving, back to Carrollton, then to Denton and finally back home. I was mentally exhausted by the time we got home because I was focusing on the task at hand.

I still have not heard anything on the MRI. I hate waiting on these things. I am sure I will hear about the newest blood work in a couple days.

On a good note, we had family pictures taken over the weekend and they turned out really well. My friend Tori did a great job! http://www.recollections-photography.com/

My head is swimming.....

but I feel like the rest of me is sinking. I am sluggish and tired. I want to crawl in bed and stay there.....I think I would if I did not have things to get done. I literally feel like the old commercial that was for a cold medicine...."medicine head".....where the balloon was lifting off the cartoon head. I feel like that but it is not a cold. I wish it were so easy.......

I just got a call from the neuro's office. They want me back to get more blood - VAMPIRES. My ANA titer was off - which it has been in the past, but she is worried about it, as she has never seen it, only my other docs have. I have been looked at for SLE or "Lupus" before with no positive diagnosis only "possible" multi-connective tissue disease. Auto-immune stuff really sucks......this past week has been for the birds, I tell ya! I am not supposed to do any more IVIG for now as my WBC was lower again this last time and the doc is telling me to hold off on any more treatments. I still have to get my blood looked at every week once again to see if there is any change, and once I make it in to them, we will see what the hematologist has to say about all of this. As for now, the neuro will run a full ANA panel and we will see what that comes up with.

Until then, peace up, peace in, peace out....

Slacker Update

Well, I went to the neuro and she decided I have been in an Exacerbation or that is what it sounded like with the brain fog and fatigue I have been dealing with lately. She thought it would be best to start a three day dose of Solumedrol (IV Steroid) which I have never done before and never really wanted to start doing, but this time I conceded. I figure I will try it at least once and see if it benefits me at all. I think I was freaked out by the thought of what it could cause my Lyme to do in the past, but I think I am out of the woods in the case of LD now. So I did the first dose of IVSM in the office when I had infusion on Thursday and it went fine. They then arranged for a Home Health agency to come to the house an deliver the next 2 doses to me and show me how to administer the next treatments myself. We left an access needle in the port overnight and I did the final dose today and removed the needle after it was finished. I have seen this done several hundreds of times now so it was really nothing new to me - I just actually had to do the Heperin lock on the port line myself rather then the nurse doing it like after my IVIG treatments. No problem there! I also had another round of MRIs run yesterday to see how they compare and see if there is any new activity. I do not know when I will hear anything back on them. I do not have an appointment for follow up with her until the end of January.

I also made the appointment to see the Hematologist, but cannot get in to them until Dec. 22. The neuro took about 8 vials of blood for her own tests the other day to compare and see what the hematologist has to say when they look into the blood as well.

We are also looking into CCSVI and possibly going to have me tested for this as a possible cause or problem leading to some of my symptoms. I sent some info to my vascular surgeon and I hope he will be interested in looking further into this and helping me out - but I have also listed myself as a candidate for the study. I would have to fly to Buffalo to do the testing but I am willing to do that! It sounds pretty promising! Anything to advance research right.......

Call Me Slacker

I have not blogged in so long. I have not felt like it. I am not sure why really but I just haven't. I guess it could be the obsession with Facebook competing with my bloggin time. What ever did I do with out Facebook in my life?? How did I ever get along? I am sure I was more productive but felt less "connected". Why is that?

Anyway, I have been doing pretty good I guess. There has been nothing huge in the medical department which is a good thing, right? Well, we have been watching my White Blood Cells play like a yo-yo and go up and down constantly for months now. I maintain a relatively low average count anyway, but it is staying lower than normal now. I will be seeing a Hematologist soon - made a call to one I am familiar with today. I have a follow up with the neurologist in the morning. I have had some brain fog the past couple weeks. I seem to have some short term memory loss, more than normal, scatterbrained like - where I would not normally do silly things. I have been brushing it off (to busy-ness) but Ken mentioned it tonight so it is noticable to others. Great!