2011 - another year already...

Times flies when you are having fun, huh? Or even when you are not I guess....it 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!

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.

HEEEELLLLLLOOOOOOO

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.

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. ;)

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.

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.

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!

Invasion of the swine

FLU anyway. Well, it hit our house this week. My youngest caught it, but not sure where from. She started running the high fever, then the cough and runny nose came on pretty fast as well. She has been a lump on the couch for 2 days now. We went to the doctor this morning and he gave her and me some Tamiflu. Hopefully it will do it's job for her and cut things short, and prevent the flu from settling in with me! I do not want to deal with it myself! I have been feeling a little rough on and off for the past few weeks anyway and not really gotten sick, but just been achey with headaches. I have been a little more run down feeling lately and tired but hopefully it is nothing. We have been running and doing quite a bit!