Sunday, May 30, 2010

Brain problem, blood problem, back problem BBB...

So it's 1 minute to the Monday before my Liberation as I begin this post.

Well it's getting closer and closer. It's a good thing too because I feel like I'm going into a flare right now. My left hand has begun having more tremors and feels more prickly numb. Also my back and legs have been having more fits and the spasticity is just too bloody much. I had considered asking the neuro about a baclofen pump several months ago but then got into the CCSVI shtuff. If this procedure doesn't help that will be in my future...

My back problem may still stand in my way and now that it's Monday I can say "today" I will be seeing yet another neurosurgeon to see if I can get interest in a discectomy again. Now that I have had to get the most recent on my medical wellbeing from my GP for my FSIR's office I have a ton of info on doctors thoughts on my back problem and it sure does piss me off because there's a strong consensus about the problem just a lack of getting something done about it. If after this Liberation I still have walking/spasticity issues with my legs I will push even harder for my back to be fixed because that can be causing a lot of this too! It could just all be my MS but I want to know for sure! I'm not sitting back and accepting any old thing, I'm going to know for sure before this is over!

Will update on how the neuro goes tomorrow morning.

Wednesday, May 26, 2010

The next step

So I posted an intro and followed it with where I am right now with my M.S..

When I finished my intro I had said it was onto looking for someone to do the CCSVI procedure on me. Well I'm continuing from there.

So I was lucky, no blessed to find Diana Gordon to get me into Dr. McDonald's clinic for testing. After this I signed myself up for Poland, it took forever to get a response and when I did I was told I was on a waitlist for 2011 sometime. YIKES! Who knows what decline I'd have between that time to when they could fit me in?

Only a few months ago I stopped taking Tysabri. Over the 6 months prior at least I had been feeling very weak and I figured it was just very slow MS decline but then I found out I had a sinus infection. I felt a bit better than I had in ages when that was relieved but it wasn't completely relieved and next I had a chest/lung infection - scary as hell! A known possible side effect of taking Tysabri and one they take very seriously. I contacted my neuro after seeing my G.P. and deciding with her that I needed to take a break from the med to get my immune system back! His response was that it's be "okay" to take a break not that I needed to though... PFFFTTTTTT! Yeah um I needed to!

Since then I have felt better than I have since before that 6 months of decline feeling. feel stronger and more get up and go. I don't worry about PML any longer and quite honestly I'm done with Tysabri. I'd do it again if I were starting from scratch but over the 2 year mark is very, very scary!

So anyhow I was left with 2011 in Poland with Dr. Simka and Ludyga sometime. Better than never and it would give me time to get the money together. I also contacted a medical tourism site and another Polish site which I heard back from the latter recently and it said I could be "Liberated" in 4 months basically. I never heard back from the medical tourism site...

While I was searching a new friend on facebook had gotten into a Dr. in Albany only to be let down. This Dr. cancelled all his appointments with no explanation whatsoever. She was heartbroken and made a youtube video that brought me near to tears. I told her something would happen, she would be liberated! The whole thing lit a fire under that gals butt because she went full force finding all the FSIR's she could in the U.S. sending them letters with her scans and by golly she got multiple positive responses! She went with a lovely doctor who had her in I think if Ir emember correctly within 2 weeks! Next thing we knew it she was doing pre-liberation youtube videos and letting everyone know how to find FSIR's for themselves, even sharing her letter and telling people they could use it!

Soon enough her date came and within 24 hours she was back on youtube with her post procedure video. The difference was so obvious and appeared miraculous. A laboured, unsteady walk turned into your regular everyday walk with seemingly no effort! I think about a day later she brought us yet another wonderful video. Being spotted by her daughter she jumped, Denise Manley jumped! She jumped like a little girl! It had me grinning ear to ear and tears of joy were hard to cage!

Next thing I knew Denise messaged me and told me her doctor wanted me to call. I was floored and flummoxed, it was like a dream. What's more she said he was doing it for next to nothing (considering American healthcare costs for such things), she estimated $5000 USD. My husband was in his office next to our room and I called out for him to come. I couldn't yell to him the whole thing and I needed him close as I asked... can we do this? The man of my dreams, my one and only true love told me YES!!

It was a Saturday and I thought oh gosh does he take weekend calls?? I sent a message to Denise to ask but couldn't wait for her reply I was on the phone and leaving my info. I sat on pins and needles from then on.

The next weekend was my sons birthday party and I needed to get some last minute things at the store. As I scootered around my phone rang... an unusual number with an unrecognizeable area code. Could it be? It was only the Monday after my call... IT WAS! It was the doctor himself and he told me he was hoping to have me in in June. I was so elated! he was expecting tears and I told him I had had my ugly cry with my husband on the Saturday when I'd been told he wanted me to call. Anyhow all was underway.

Now because my friends and I have seen multiple closings of places offering this I didn't go canceling my other possible appointments, after-all perhaps he'd be shut down or choose to stop for some unknown reason :/

Now my date is June 7th, time for the procedure is 1 PM, time to be there to get my sedative and set up is an hr and fifteen prior. So at 11:45 I will be there getting ready to go.

This doctor wants to only do angioplasty unless completely necessary which I am good with. I am concerned about restenosis who wouldn't be but I don't want him to be too lax and I restenose quickly because the vein(s) just don't want to stay open long enough.

The sedative will be about $12 USD, the venogram $3000 USD, venoplasty $2000 USD, stenting if required another $2000 USD and I believe that's per stent. The hotel is about $500 USD - I booked it from the night before and then for 2-3 days after the procedure because this doc wants to make sure all is alright over those first few days :)

So now I'm counting down the days - it feels like it's tomorrow and yet it feels forever and ever away. Also I'm battling with my hopes for this to bring things back. I don't want to have my expectations too high only to have them trampled, however at the same time my mind can't help daydreaming about having abilities back. I dream about being able to dance with my son :o)

My M.S. as it stands now

I have been told I have aggressive, atypical RRMS. I felt I was becoming SPMS in 2003, my doctor said I was close but to this date has not changed the type of MS I have. Mind you this man didn't think I even had MS back in 96...

Okay so like others I think it would be smart to document my symptoms, I hope to do some sort of video though I am camera shy. For now it's just a list - bare with me :o)

I'm going to go through the list from this site and put what I have down:


Visual Symptoms

I have gone through it all with the eyes, right now they're not so bad, but when it gets hot my vision becomes quite murky.

Motor Symptoms

- Paraplegia of the legs
- Spasticity (head to toe; neck, arms, hands have intention tremor, restricted movement from trunk to toes greatly due to spasticity)
- Muscle atrophy (all over but the worst is in the legs)
- Spasms & cramps (in the legs)
- Myoclonus (in the seated position my legs will bounce all on their own)
- Footdrop

Sensory Symptoms

- Paraesthesia (throughout my legs and also my hands and wrists)
- Neuropathic pain (seems to be along my right side, worst in the iliac crest/hip)
- Proprioceptive Dysfunction (My legs/feet, often when I'm on my scooter I can't tell if my feet are actually on the scooter or if they're falling off...)

Cootdination & Balance Symptoms

- Ataxia - hard to make the top and bottom part of my body to work in concert I need to hold onto things to get around.
- Intention tremor
- Dysmetria
- Dystonia
- Dysdiadochokinesia

Bowel, Bladder and Sexual Symptoms

- I have a fun mix of bladder hesitency & urgency
- Constipation (understandable given my inactivity I think...)

Cognitive Symptoms

- Cognitive Dysfunction (It's a bit of a joke among MSers we call it cog fog or CRS which stands for Can't Remember 5#!T hehe)
- Anxiety (I've had this forever but I think it's become worse since the actual diagnoses)
- Aphasia/Dysphasia Often its hard to talk without my tongue tripping or brain tripping)
- Short Term Memory Loss (I used to have this very badly now I have it only once in a while though it seems to be becoming frequent :( )

Other Symptoms

- Uhthoffs symptom (this is where symptoms become worse with heat
- Fatigue
- Acid Reflux which causing swallowing problems and voice problems
- Respiratory problems (Often I will feel as though I'm not getting enough air but I am, it's very odd)
- Inappropriately cold body parts (I've had trouble with cold feet forever but now I find if I get a chill it also cannot be alleviated as quickly as it used to and seems to take longer on the right side.

Alright so now I've gone through that sites list which is pretty thorough. Not sure if it had the feeling woozy/drunk like feeling without actually being inebriated but that is also one of my issues. Also it feels like I have scratchy scrubby pads on my legs ICK!

I never walk without my walker save the one in a million time I feel strong enough and with it enough to have the top and bottom halves of my body work together a little and even then it's holding onto a wall or doorway (some sort of fixed object).

Alrighty that's all for now, I really really really hope some of this is relieved with the procedure :)


I had heard about CCSVI vaguely from people, not the name just that they'd heard something big had been found... I didn't put much into it as over my 15 years with this I've heard/read all sorts of things. If you have M.S. I'm sure you have too.

Anyhow in November I saw the W5 story that introduced me to CCSVI. All of what I heard and saw seemed very real, very understandable and ignited something in me.

I reached out through facebook and added CCSVI to my Google news alerts so anything that popped up on the net with CCSVI in it would be before me. I also emailed my neurologist, Dr. Paul O'Connor of St. Michael's Hospital in Toronto, ON. His response gave me more hope as he did convey interest in studying it etc...

I had an appointment with my neurologist a few weeks later and asked him about it in person, his tune seemed changed but from what he told me reasonably so. He said he'd met with Dr. Zamboni and found the man knew nothing about conducting studies and that patients can basically learn how to do better with tests after their given one time, and so the improvements he saw may have just been due to patients learning how to do better in the tests. He also told me it would hold no hope for me anyhow as I was "progressive." This was news to me and so startled I asked had things changed was I no longer Relapsing Remitting? He said I was but that my RRMS was progressive - a little double talkish for me. I left that day feeling somewhat defeated but I wasn't giving up on keeping up with the growing mounds of information being collected and published on the internet.

Now given ANYONE can post just about ANYTHING on the internet but there are more credible sources and less credible sources and we have to keep that in mind when filtering the information just as we would in a social grouping.

The more I learned the more hope I had about this and I chose to find out if I had CCSVI. Then I found out I couldn't get tested here without paying for it. Furthermore I had to make sure the people doing the testing knew how to do it because it wasn't your regular everyday doppler scan.

Then I met Diana Gordon. She had mentioned being tested in Barrie... BARRIE?!?! I live near Barrie!!! So I asked her to please tell me where this magical place was and she obliged but under the strictest confidentiality so that this wonderful clinic run by Dr. Sandy McDonald would not be overrun. DONE! It killed me not to be able to shout it from the rooftops but I was just going to have to deal with that.

March 23rd, 2010 I had my doppler at Barrie Vascular Imaging with a lovely tech named Angela. My family was allowed in to watch, It took about a half an hour and she couldn't tell me anything. I had to wait to get the results from my family doctor.

About a week and a half to 2 weeks later I had my results... I met the criteria for CCSVI. My right jugular and subclavian were stenosed and so was my left subclavian. So there we go I have what they say people with MS appear to have in great numbers. The first thing that almost completely across the board we share in this disease other than being human!

Now onto finding where I could have this fixed because my own country wouldn't do it for people with M.S.. I have veins that are not working properly and I can't have them fixed because I have M.S.? How wrong is this? They want studies to prove it can help with M.S. before they'll fix it - well what if I didn't have M.S.? Then it could be done. So why do we have to even have M.S. as part of this? Why should we be prevented from having proper blood flow which can't do anything bad?

Oh well the search begins for "liberation" (the term coined by Dr. Zamboni for letting the blood move freely in the veins again).