Sunday, January 2, 2011

2011 - another year already...

Times flies when you are having fun, huh? Or even when you are not I seems as we get older the time just starts to fly by faster and faster. I sometimes wonder where it all goes....

The last week has been a ton of time spent in the car bouncing from home to home of family and framily (friends that are like family). We drove from Texas to Oklahoma to Texas to Georgia to Texas and around Texas some more.....I feel a bit like a pretzel in a knot. I am not sure if it spasticity and just tired from being in the car but I have been in some strange pain in  my lower legs for days and it is not going away.

Once again we start the new year in insurance limbo - but what is new? I hate having to deal with this every time we change insurance or roll to the new year. I do not understand why this cannot be a smoother transition. I am already worried about when my next treatment will be and how long it will be before I get my port flushed again. I will start down that road tomorrow sometime to see what happens this go round.

As for the holidays, we had a good visit with all the family and our framily! Although part was cut short - I love them all! Here's to a Happy New Year to everyone - May God bless you all!

Sunday, November 28, 2010

End of the year creeping up......

and the insurance gets messed up - again. Who goes and makes major changes to your medical insurance plans November 1st? Well, my husband's company chose to this year.....and it does not benefit us - for sure! Just another sign of what is to come with Obamacare in the near distant future. I am blessed to have medical insurance I know, but now my rates are higher, my plan is less coverage, the benefits switch soon causing more out of pocket costs right before the year end, thus causing more costs at the beginning of the new year as well. I just do not understand why things need to be messed with all the time. Fortunately the company did make a change in carriers and I will be back on my old insurance carrier come the first of the year. YEA! It will mean another move for infusions, but I will be back under my old center but in a new office and with my old nurses who are soooooo awesome! I can't wait until it takes effect. Seriously, if members of congress had to live with the choices we do on medical decisions, living with longterm illness, they would rethink the way they vote.

Saturday, November 6, 2010


I have not been in a mood to blog for the longest time - but here I am. I have been feeling pretty good so that has been a blessing. We have been busy, busy, busy, so feeling good is a good thing for sure! I am starting to feel a bit run down and I think it may be tied to my B12 levels. I will know more about that next week when I get my blood work back. I think I will be going back to the B12 shots and taking the supplements by mouth as well.

Friday, May 28, 2010

My MRI shows nothing??

Well, nothing new on the MS side I guess.....but I now have bulgin discs in the L-2 & L-3 along with the L-4 & L-5 I already had! My back is so shot.....I am sure my back doc would be all for surgery now if I went in to see him. I think I will stay away. ;)

Thursday, May 6, 2010

A multitude of doctors and still

in the same place? I guess that is not a bad thing, but it is also not a cure. :) The new doc I saw about CCSVI said he did not think I had CCSVI. He also said he did not know alot about it but he just did not see enough there to say I had any blockages like he would think they would be looking for.....

I also had my 3 month with the neuro. She is sending me to have a full MRI set done. Things are not as good as they have been in the past and I am not sure if this is from new stuff or possibly from no longer taking Betaseron. She did not want me to start back on the shots yet, and said to wait until we see what the MRI shows. Some days it all feels like we are starting back from day one with this crazy disease. I know I could be so much worse off, and I am blessed that I am not, for sure! Wonder if they will ever find out what it truly is.....speaking of, Ken rode the Bike MS Frisco to Ft. Worth this past weekend and he rode 85 miles. The weather was perfect! We thought it was going to storm but it passed around and turned out to be so nice. He had planned to ride 75 more miles on the next day, but I had to leave town for a funeral and his knees were bothering him as well. All in all the ride was very successful - he made it 30 more miles than last year.

Friday, April 23, 2010

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.

Sunday, April 18, 2010

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.....