Monday, May 31, 2010

Being Proactive

Well, its another dreary day...welcome to the 'Wet'coast...and since I don't have to work today...or any other day, :(  I thought I would share my thoughts on things I am doing, and/or planning to do to support my recovery before and after my potential liberation.

There's a part of me that is saying "don't get ahead of yourself don't even know if you have CCSVI" which is battling with the "need to be organized/plan ad nauseum part of me".  I adhere to the Boy Scouts' motto, "Be Prepared".  Be prepared for whatever the outcome from this journey throws at it physical and/or emotional.

You see, I'm a bit of a 'control freak'.  I never realized I was until I had to share my classroom with another teacher because I couldn't work full time.  That was an eye-opener!  And having MS has really challenged the 'control freak' in me, because it's made me realize that no one is truly in control of anything.  I don't control when my MS decides to flare up, I don't control how I'm going to be feeling when I get up in the morning...that's a crap shoot.  So what does a 'control freak' do to deal with this sense of being out of control?...I control the things I can!

This means I follow a strict regimen:  diet, supplements, massage therapy, reflexology, regular visits with my naturopath (B12 injections), exercise (hmmm...not so strict on this one), plenty of rest.  Until the whole CCSVI theory hit the web, most of my focus has been on supporting the nervous system and alleviating inflammation, as per the immunological theory.  The CCSVI theory now has me rethinking how I approach my MS as far as supplements and complementary therapies go.

So here's what I'm thinking/doing:

  1. Talk with Naturopath about stopping B12 injections, as I don't think its helping as much as it did initially (was for nerves and fatigue) (I'm taking a Vit. B complex as well)  Also ask about supporting vein walls/vascular system, right now, in preparation for potential treatment.  My reflexologist suggested this, which makes sense to me...if there is a chance that I could restenose, why not try to make the vein walls as sturdy as possible to help prevent this?  I don't know if you can do that (I know Vit. D helps) but I also have heard Selenium mentioned. 
  2. Review the supplements I am taking and see if I need to add or delete any, with an eye towards supporting veins (is this part of the circulatory or the cardiovascular system, or both??) Might be a good idea to find out for sure :)  
  3. I'm forcing myself to take the dog for a walk EVERY day, regardless of how I am feeling.  Currently this means around the block (500m). I think I can manage that. LOL
  4. Look into chelation!  I want to spend some time on this one because I see a lot of potential with this...but only AFTER liberation.  Here's why:  I read a research paper on a study that looked at a condition that caused too much iron deposition in the brain (sound familiar?!) but it wasn't MS.  Anyways, they wanted to see if oral chelation would help alleviate the symptoms (mobility, spasticity) and guess what...they did.  So, apply this to what we know about CCSVI and MS.  Most MS patients have too much iron in their brain which (i think) causes our body to attack the toxins created by the iron.  Logically then, it would make sense to get rid of the excess iron in the brain.  However, it doesn't make any sense to do it before your veins are flowing freely because you'd still be getting reflux back into the brain (according to the theory) and therefore more iron.  So you should wait until the veins are draining properly.  Now, I've done chelation and my body reacted quite strongly to it (it felt like I was having a relapse) which can happen.  So my plan is, and this is all contingent on my having the procedure, to wait about six months after I've been liberated (giving my body time to adjust) and then do the chelation...unless my naturopath suggests otherwise.:)
  5. Continue with massage therapy and reflexology, but think about adding acupuncture.  When I first started having symptoms (numbness in fingers) I actually went to see a doctor of Chinese medicine who performed acupuncture on me.  The interesting thing about this experience is that, after 3 sessions, she told me that it would be a waste of my money and time to continue coming to see her because the problem was in my brain and she couldn't 'fix' that.  Hmmmm....???  So I'm wondering, if you know it might be a circulatory/vascular issue, if acupuncture would help that?  
  6. And lastly, but certainly not least, continue with my diet.  I've been on this diet for almost 2 years now and I'm at a point where I'm actually afraid to go off it, for fear that I will feel worse, that the restless leg syndrome will come back, and...gasp...that I'll gain the weight back that I lost!
So, there's my action plan for now.  The 'control freak' inside of me is happy.

Saturday, May 29, 2010

Pre-Op Symptoms

It's a very dreary Saturday...the perfect type of weather to sit in front of the computer with a nice cup of tea (Jasmine green tea...I think I'm addicted to it, btw) and blog.  Where is the sun, anyways?

I thought it was a good idea to list all the MS symptoms I have Pre-Op so I can compare them Post-Op, as other MS bloggers are doing.  Plus, it's always interesting to read about what other MS'ers have to deal with, and sympathize, because unless you have MS 'you really have no idea' what we deal with.  The last bit is in quotes because my husband is, frankly, sick of me saying it...but it's true!!

I actually find this a bit uncomfortable to do because I don't want to come across as being a 'wimp' listing all the things wrong with me...makes me feel kinda like a hypochondriac or something. LOL  Especially since I don't look like there's anything wrong with me...which, as many MSers know, is one of the most frustrating comments many of us get..."but you look so healthy" is one of my favourites...yeah, well, looks can be deceiving!

OK, so on the EDSS scale my neuro put me at 4, (I think)..I would have rated myself a bit lower (like a 3) but I'm only basing it mostly on mobility and I know the neuros look at a number of other factors.

So, the symptoms (which I've put in order of how much of a pain in the butt they are for me):
  1. FATIGUE - varies day to day, hour to hour but it really restricts what I'm able to accomplish and it's responsible for my having to completely go off work for the rest of the school year (I'm a teacher) which was one of the hardest things I've had to do because I LOVE teaching
  2. LEGS - this encompasses a couple of symptoms that I experience elsewhere on my body but numbness and stiffness in my legs has restricted how far and where I am able to walk.  I now can walk about 1/2 km (around the block) before my right leg starts gimping on me and I feel like if you were to tug on me gently, I would keel over.  Plus I have to concentrate very hard on walking straight...forget about looking around, that would send me off balance! To put this in perspective, before MS I used to run 5km every day, or almost every day, 2 years after being diagnosed I was able to walk 5km on a regular basis, and now (7 yrs later) I'm lucky if I can make 500m.  and of course I have to rest for about an hour after.  Yeah, this one sucks!
  3. BLADDER - I used to have a steel bladder...honestly, I could hold it all day, no problem. Let's just say that when I have to go...I have to go NOW!  You know its pretty sad when you can swap pee stories with your 82 yr old father...we both know all the rest stops along the Coquihalla/Okanagan connector!  And yes, I have to get up in the middle of the night...but usually only once or twice on a good night.
  4. NUMBNESS - I already mentioned the legs but I generally have numbness/altered sensations over a good portion of my body.  If you drew a straight line across my body, I would have numbness from the chest/upper arms's actually kind of weird.  And the further down the extremities you go, the more numb I get, so that my hands and feet are the worst.  I think the numbness in my feet really affect my balance, which of course affects how I walk.  Driving was a little weird because of the altered sensation but my brain seems to have adjusted to the difference.  I used to be able to touch type 55WPM but since I can't feel where my fingers are, I've resorted to the two finger typing method.  Sometimes my handwriting is a little off because my hands are numb and stiff (?).  I'm waiting for the day someone looks at my signature on the credit card slip and questions it (okay, I don't really think my scrawl is that bad...but I have thought that)  I like the PIN signature required.
  5. MEMORY - I have to laugh at this one because I'm not sure how much is MS and how much is aging!  But this one drives my husband crazy because apparently I don't remember things I've said or he's said to me.  Hmmmm...maybe that's NOT MS.  I do find I have to write things down...but don't most of the over 40 crowd??? LOL
  6. COGNITION - I don't have the brain fog that many MS'ers complain about but I do know that I have trouble sometimes finding the right word or mixing up words.  This can be quite funny or frustrating...especially when you're teaching a concept and what comes out of your mouth makes no sense at all except you don't realize that's what's happened until you look at the puzzled/blank faces of your students, or better yet, your ├╝ber-achiever in the class points out that you've said something nonsensical..oh, yeah...that's priceless.
  7. COLD HANDS/FEET - this one should have been further up on the list, like #5 but I've always had cold hands and feet and just deal with it.  The only difference now is that, especially at night, it's very difficult to get my feet warm...I typically wear socks to bed.  Now, having said that,  I have been experiencing HOT hands and feet???? go figure.  Although I did read in a post that it may be menopause??(great)
  8. TINNITUS - This is an interesting one because I've had tinnitus at least 8 years before I was diagnosed with MS and never connected it with MS until I started reading that other MS'ers suffered from it.  Which of course begs the question: "was this the first indication I had MS?"     I will say that when I am not feeling well, the ringing in my ears becomes a roar!
  9. PAIN - I sometimes get stabbing pains particularly in my hips but they don't last very long.  Not sure if this is MS or age related, but I thought I would add it here.  I occasionally do get unexplained muscle pains at night...mostly in my legs.
  10. RESTLESS LEG - I used to get restless leg almost daily, usually in the evening, but since I went on the pseudo best bet diet I have not had this issue.  I do get it if I've eaten something I shouldn't and then I think "serves me right". :)
Well, I think that about covers it.  It'll be interesting to look at these symptoms post-op and beyond to see which ones improve.  I'm looking forward to being able to say there are changes for the positive.  Only time will tell.

Friday, May 28, 2010

Eenie, meenie, mynie, mo...

Poland, Bulgaria, Scotland, India, list of potential places to get tested, and hopefully, treated for CCSVI.  Blatantly missing is Canada...but I'm not going to go there because I just get too outraged when I think about the fact that I was naive in thinking we had one of the better universal health care systems in the world...ha! Double ha!! 

So, I put my name on the waiting list for Poland (they're booking into 2012)hmmm... not so good.  I was considering Bulgaria, but something was preventing me from contacting them...?? Then the CCSVI UBC Facebook group posted a link to a clinic in Scotland...I'm thinking, I've always wanted to go to Scotland...oh, but you have to put down a deposit of £100...hmmmm, could be a scam, I'm thinking.  'Better check it out.'  Turns out I've heard of the director, and the clinic specializes in alternative/complementary MS I go ahead and pay the £100 and haven't heard anything since. Hmmm...maybe it was a scam???  India is too expensive, and the US is still an option, but I'm sure everyone and their dog is trying to get in to see the few doctors who are performing the procedure, and anyways they probably charge an arm and a leg.  What to do, what to do???

And while all this is going on, I'm thinking about the two doctors in Germany whose names appeared on a list of doctors performing testing and/or treatment.  Although I haven't seen their names mentioned in any of the CCSVI facebook groups, the thought pops in my head..."I'll be in Germany this summer...I wonder if..." so, I acted on the thought and emailed the first doctor, whose email came back undeliverable. This is not a good sign. I email the second doctor who emails me back and writes:
 we can offer you a date in june
we start always first with MR venograms and doppler and then evaluate
all and perform also if necessary ballooning
That was the email...Holy cow!!
So who the heck was this Dr. Vogl?  Turns out he specializes in oncology radiology and he's the department head at the University hospital in Frankfurt.  He pioneered some experimental procedure for treating cancer...there's a Facebook page dedicated to him.  This is good...a radiologist who isn't afraid to try new things!  This is looking good.  Oh...and did I mention he performed this experimental treatment on Farrah Fawcett?!  Unfortunately, we all know how that went :(
At this point, I'm still unsure about what he's like with CCSVI...has he even done any????
To the TIMS forum I go...where I find mixed reactions to Dr. Vogl.  Most say he is very professional (that's good) but that he doesn't explain much and tends to be blunt.  In short, he is not warm and fuzzy!  Hello people!...he's German AND a specialist...this is normal! LOL  I feel safe in saying that because my entire family is German (hence the trip to Germany)  One comment that did worry me was that he does the testing and then declines the procedure???? But I think they meant declines to do it immediately after, as these people were asked to come back in six weeks.

 I made it very clear that my expectations are that I want to be tested and have treatment WHILE I am in Germany.  I think he got it, but his emails are very short and's like trying to pull teeth to get information without feeling like you're pestering him with emails (because I have questions!!)

So I have an appointment for testing in Frankfurt on the 2nd of august at 12 noon and if I have CCSVI I will have the balloon angioplasty done the following day or the day after.

And I'm thinking, "Is this Fate...Divine Intervention...or what???"  I mean, I manage to find a surgeon who does the procedure, in Germany, and can do it while I'm there on vacation...and its cheaper than Poland or Scotland! Ha!  Double ha!!


Wednesday, May 26, 2010

In the beginning...

So this is my first attempt at blogging...'nuff said.  This blog is about what I've done and am doing to help myself...and to occasionally vent about issues related to MS. currently I am following a diet very similar to the Best Bet/Swank diet, taking supplements, using massage therapy, reflexology and homeopathy in an attempt to improve or at the very least stabilize my MS symptoms.   I think it has helped to some degree and up until this past winter, I was quite satisfied to continue on with 'the regime'.

Of course, that was before I learned about CCSVI and the renewed sense of hope that all MS'ers worldwide experienced.

So here I am at the beginning of my  CCSVI journey...the road to liberty.