Tuesday, September 14, 2010

Tis September and -

I'm still waiting for October's scan. I'm looking forward to it and hoping both for and against the possible results if that makes any sense.

I'm hoping I've restenosed because then I can get retreated at some point and possibly see all the benefits I had gained and lost back. However, I am also hoping that there's no need to worry about going back for another treatment. I'm hoping this is just some sort of prolonged lull in the ongoing work of my body trying to figure things out and fix it's self. I'm hoping that things pick up again on their own. I try and think myself into that but it's very hard.

CCSVI and getting the treatment is exciting but after you've done it it's a whirlwind of emotions as well. Dealing with what your outcomes are can be difficult. Some things can make you so happy and others so sad and then again others that do both - it's very tiring and definitely plays with your head and heart.

I am very glad I had this done and would do it again in a heartbeat. I've always been willing to do things to get myself better now I face trying to take care of my body better.

Many come back from treatment thinking hey back to that life I was meant to have and throw caution to the wind partying it up if able to or simply going back to eating junk blah blah blah Or worse yet coming back and doing nothing to help the muscles wake up that haven't been used in ages!

My big trouble is diet. I live to eat instead of eat to live. I've meant to do the Best Bet Diet but I've been a bad girl, it is very hard and I keep wishing I had money for a cook or dietician to help me with it as it is so damned hard when you're a food slut such as myself.

Another problem is getting proper exercise for the limbs that haven't done so in ages. I was referred for physio but haven't had a phone call and I left a message regarding the wait but no reply... it sucks!

Anyhow here I am trying to deal with where I'm at, hoping that things just don't get worse :o)

Monday, August 23, 2010

Sad to say...

Well it saddens me to say this to everyone, but I'm pretty certain I've restenosed.

My best and immediate show (while on the table) is completely reversed. It disappeared directly after my left lower jugular was cleared and now it's fully back. What was it? Well at first I thought it was simply most of my MS hug but it was more than that and I didn't put it together until today. After I got up from the table I noticed the fronts of my thighs felt lighter too and the pain across my back had been relieved. Now I know this was part and parcel and instead of it just having been spasticty across my lower abdomen it was all of this area. I had been able to stand up straight longer, easier and it was because this was relieved. However now it's back.

Also my vision has begun to blur up again and wellsome other things too.

The good news - I know it worked. The bad news - for some reason it's stopped so now I'm going to have to PAY to have it done again and then what if I'm not stented or it restenoses again - I can't afford to have it done over and over again...

So for right now I am sitting tight until October when I go for my next scan in Barrie. We'll see what the scan says before I go on and bother my wonderful Interventional Radiologist.

Well, that's ma story for now. Still fighting the good fight and hoping that sooner rather than later we'll be able to have this done at home!

Monday, June 28, 2010

Well wadya know!

Hiya peeps,

K so I've kept pretty quiet about how I'm doing because I didn't see the mega miraculous results some others did. I still found some benefits that for anyone with MS and the load of symptoms I've had a relief from, release of anything is amazing!

I was so happy for my friends who are doing so well and just well... rolling with it and trying not to be down about my lack of being able to jump up and down. I went in realistic BUT that doesn't stop you from WANTING to have MORE - what a human condition eh? We always want more whether it's things, happiness, love, health, things... So anyhow I was just learning to cope with things. I even felt like maybe some things were backsliding and then today...

Today hubby had an early dentist appt so he left and after a long night I hoped for a sleep in BUT the munchkin marched in while Mommy was on the toilet having a morning pish. So anywho we went down and got breakfast after a quick cuddle, we dove into a bag of wanna be Crunch Berries *thumbs up* on those! And I moved around with the walker pretty easily so that was nice but didn't read anything into that... I was going to take him to his last day of school later blah blah blah. Hubby came home, went to his office in the house and my son went to watch some World Cup action.

K so anyhow afternoon rolls in and it was decided that Hubby would take him to school and I'd pick him up because we lost track of time and I couldn't scooter him there in time... So I went out with the scooter after a little deliberation. I went to the mall and was going to have a manicure - lost my good nail file on the trip and can't find a decent replacement that doesn't leave nail tares. Well got there and bumped into a fellow MSer whose also a scooterer (hehe). We got together before I left for the treatment and I've only been able to chat minimally with him since I returned. In part because of my major need for rest after everything and then also because I don't want someone to see me and not see huge changes and then lose hope. So anyways he loved what had happened for me etc... SO huge relief for me. Then off to pick up my son.

When I picked up my son I ran into a fellow parent whose friend has MS and is just learning about CCSVI yada yada and she asks if she can give her my info and I said YAH! Then I took my kid to a splash pad with that lady's nanny and her kids and met with other nannies, we hung out for a couple of hours, it was nice. Then we got to going home and I was a starvin' Marvin. So I came in, used the facilities and out we went and grabbed Pizza Hut :) (BORED YET? HANG ON IT'S JUST FRAMING) My son is in soccer and it's our responsibility to provide snacks tomorrow so we then headed to Wally World for some fruit and yogurt bars and juice boxes. Then we went home. Hubby went in with some bags and Ethan went in with the left over pizza and Mommy sat in the car waiting for her scooter to be brought to her door. SCRATCH THAT Mommy felt strong enough and had enough energy that she wanted to get up and go! SO I got out of the car closed the door used the side of the car to steady myself and also used it for support as I walked towards the garage. I reached the front before hubby came out the door inside our garage from the house. He came on down and asked if I wanted to give it a try and I said YES! So he offered an arm and I took it and got up the little step into the garage then rearranged the hold on his arm on my right side and walked to the steps and kept on going, I stopped at the facilities for a moment and then right on up the stairs to our room :) First person I called was my friend Brian that I had met with earlier to tell him of the new BONUS and he was very happy for me *smiles* I then called my best girlfriend a little later and now I'm telling all of you after posting it on facebook!

My legs still have a lack of sensation and are hard to get in motion but I think in time with physiotherapy I WILL get them back!

Hope that gave more hope to folks, it has to me :o)

Thursday, June 10, 2010

4 days post "Liberation"

Well howdy folks,

Sorry it's taken a bit but there are so many things going on, so many people and places etc... etc...

Everything went so well. I couldn't have asked for better. Months ago when I first learned of this I became concerned about stenting, I was frightened for a facebook friend heading to Poland and I told her don't let them stent you!!! She did and she was fine and I learned through her that basically stenting is safe it all depends on if you have a doctor who knows what they're doing basically. Not to mention what the stent is made of, I was concerned about whether or not I could have an MRI after I was stented if I had the stenting and my M.S. continued or for some other reason I required an MRI... Ginger laid my worries to rest. I began reading more from others who were learning and all the information taught me to relax!!

Anyhow when I went in for my procedure I was ready for stenting if necessary but thank G_d it wasn't. I was treated with angioplasty alone! My veins (those that could be seen fully) were not so bad that they'd collapse after the balloons were deflated :)

Interestingly I went into the procedure with a doppler that said I had a problem in my right jugular right subclavian and left subclavian. What was found on the venogram was my right jugular was beautiful! my lower left was not and my azygos was not and so those were the areas given venoplasty/angioplasty.

My doctor was lovely. When I arrived at his office I was sent to get my sedative, I returned and gave it to them to give to their nurse who would gather me when things were ready , take me to the operation suite and give me it and set me up for the procedure. The sedative makes you feel a little inebriated and honestly I don't recall fully getting changed. The nurses were lovely and did everything perfectly. One of them stayed at my head for nearly the entire procedure giving me caring strokes on the forehead keeping me calm as the doctor would have me take breaths and hold them intermittently while pictures were being taken and he wondered around inside of me. Before he put the catheter in of course he numbed the area with a couple of shots, the first was ouchy but I barely felt the second and then on we went :o)

Meanwhile my boys went and got a bite to eat and Denise (one of my Liberation angels) went off shopping, Denise and the boys came back shortly after it was done and I rested a bit and then got myself together with the help of the wonderful nurses. Then I received pain meds and got to meet with my doctor for a go over of everything. A cd would be put together for me of all the scans to pick up the following day. I actually went back a couple of days later picked up the scan and had a neck u/s to make sure the one nagioplasty on the left there had not restenosed. They can't see the azygos with the u/s so can't be 100% on that but my left jugular is flowing wonderfully :)

I noticed while on the table for my procedure that a good part of my MS hug lifted and I began to cry. After everything getting in our truck I noticed my legs seemed a little lighter and my right hand with the worst intention tremor was a little better. I pulled out a sheet of paper and I wrote my name follow by I Love You and showed it to my husband :) I then wrote I a heart and then the letter U and showed it to my son!! It looked perty legible hehe.

So then I didn't have the miraculous jumping and perfect walk but things were better, even if only a little or moderately. But now it's been 4 days and I'm seeing more, it's a bit of a rollercoaster but I notice a something different daily & it goes up and down.

Anywho it's past midnight and I'm barely coherent so I'm going to do something that takes little brains wait for my boys to get home and then go to sleep ;)

Night all!

Wednesday, June 2, 2010

Neurosurgeon yesterday was nice

Well he's feeling the nerve isn't truly pinched and says he has a worse protrusion in his back at present and wouldn't want a discectomy... He is ordering a new MRI seeing the last was 2009 and we'll see where we go from there.

During our meeting I told him I was going to have my CCSVI treated next week, his response was that if he had MS he'd be doing it too. So he's not a neurologist but he's in the neuro field and he'd be doing it too! NICE!

Anyhow, I'm not thrilled about the back problem not being fixed but if it shouldn't be then so be it. Maybe after my Liberation treatment I'll be able to move more easily and the pain of it etc... will go away :) In the meantime I have a nice new neurosurgeon whose going to order a new MRI for me to make sure things haven't gotten any worse.

On a separate note...

May 7th I noticed I was having symptoms of a UTI and went to a walk in. I was right I had bacterium present in my culture and so I went on antibiotics, macrobid to start. A couple of days in things were just as bad, no let up at all which I normally get with treatment, so cipro was prescribed. Things seemed to get a bit better and I made an appointment to go into my GP and tell her the news of my procedure and get a health check ok'd for the surgeon. DONE. I also did another urine sample to make sure all was alright on the kidney front because the walk in doc on the follow up visit said no bacteriuim but blood was present... So at the end of the day Thursday last week I gave another sample after seeing my GP and am awaiting news. This Am I woke up and found I had pain on my right flank and that's where you get kidney pain if there's an infection so I haven't been back to sleep since. Now the sun is up and birds are twittering like mad and I'm tired and achey and a little tummy sick :/.

I've looked up a new hospital near me and it has an emerge and a kidney specialty area so if this ends up being a kidney infection I know where I am going! I will call my GP's office soon as they're open to find out if I need to go or not :)

My Liberation cannot come soon enough BUT if I have this infection I'm glad I have 5 days in which to clear it up beforehand!!!!

Wish me luck! :o)

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).