Itzehoe

I feel now that it is necessary to write about what I had "gained" from the CCSVI seminar two Friday's ago... or at least what I had wrote to Mom and Haley, then later to Aunt Kim.

I had ignored Mom's phone calls all weekend after Friday's seminar - I came out of there with mixed emotions, totally on the fence and flat out angry. For the life of me, I could not gather thoughts to tell her what had been said and most importantly, what had not been said or encouraged. Over the phone on Monday morning, I had apologized to her for the lack of communication though explained that I wanted to be as positive as possible while trying to give her the details of the seminar. I spoke gently, lacking negative emotion, aiming for positives:

There were about 300 people there!

... truely a good thing, shocking to my eyes and I'm sure her ears.

I was stuttering on words, to say the least. I gave up on the telephone explaination after 2 minuties and told her I would e-mail her so I can better explain myself. Really, I just didn't want to fucking sound negative and with the boiling point of frustration and anger reaching it's mark - I said goodbye. After all she had been through, I knew the only thing she wanted (more so needed) was positive feedback... and with me being that deliverance, I promised myself to end this / start this well.

May 3rd 12:35 pm

(Looking at the notes taken on my phone, my mind was blank as fuck; anger, frustration.

...This email took two hours to write)

So here are some of the notes I took:

-Getting an MRV done is not sufficient enough to show CCSVI... When a person is laying down - their veins are narrowed. Being able to see the veins internally is what researches really want - this way they can get the full picture on what is exactly happening to, around and inside the veins. The type of scan ideally for showing all the different shapes, marks, sizes and over all (most importantly) quality of the picture during a venograph is called the SWI 7T. SWI - a 3D gradient echo sequence developed to enhance the basic MRV machine used commonly.

Here is the link to the 7T scan - some pics of results... summary is complicated to understand.

But all-in-all and why this sucks that the 7T is the best scan out there for CCSVI - this scanner is RARE, large and expensive. - Deemed useless to everyday hospitals... Reason why studies will take so long.

-Do not use a stent! Mom, as I was telling you on the phone, what they have stents in use for now are not vascular vein friendly... therefore there are risks. It would be like using a hammer when you need to screw something into a wall; it just doesn't fit.

-Ok, so this is one thing that I found very interesting. Through clinical studies they found that there are different patterns for CCSVI in MS; 4 to be specific… or what they have found so far. Basically they show 4 different ways the blood is cut off / flowing in the wrong direction. Some veins are half closed, blood flowing half right and wrong… one vein closed, the other open, so the blood isn’t balance… etc.

This got me thinking – Could this be why we see different types of MS and so many types, varieties, and severities of symptoms from one person to another?? - makes sense doesn’t it? And also makes it extremely hard for someone to PIN POINT what happens during MS because it varies so much from patient to patient. No ones veins are alike and no ones MS is alike… Almost safe to say that pin pointing one cure could be impossible in our life time. Which makes more sense for people to act NOW!

-Another thing that was interesting in their results of the studies:

• Patients with PPMS had a higher rate for CCSVI; they were more frequent than patients with RRMS. ... Why this could be? I’ll tell you my thoughts soon.

In reference back to the 7T scan – in Buffalo, for the clinical studies, this is what they used – which is really good! ...minus the fact that they had 1700 people and only 50 people “Pediatric MS” – silly.

Here are some of their results:

• With a 7T scan – it shows 20% more lesions in the brain than the normal type of scan used. The doctor said it would take years for researchers to be approved this kind of scan… not to mention having to go to school for using it properly.
• They found, so far, that there are 3 different types of lesions found.
• The 7T has the ability to show exactly where the iron deposits are and where the blood is no longer flowing – this helps in pin pointing what section of the brain is most damaged due to the veins… meaning they can get a better result in knowing what veins are critical for being opened.
• About the iron deposits (lesions) that’s sad… even though all the theories brought up with this CCSVI, it’s still medically “unknown” why the lesions happen… and this – will take many years to figure out as MS is not the only disease that gives a person lesions in the brain. Which comes to my next point...
• The Dr. highly suggested that iron related research needs to be done that has nothing to do with CCSVI… Much reason to support this. Compare an old person to someone who has MS – what are the common factors: Both walk slowly… well, is this because elderly people may be forming lesions/iron deposits in their brain??? Maybe when a person gets old there veins aren’t as strong and begin to collapse?? Like I said Mom, so many questions… so much research to do.

They did CONCLUDE that the more iron found in the brain – the more disability, which brings me to what I said before about the PPMS and RRMS. Because the rate of CCSVI is higher in PPMS patients than RRMS patients – this SHOULD, theoretically, mean that people with PPMS have MORE iron in their brain… which, again – got me thinking… I always found it odd that people with RRMS receiving stem cells had such drastic change that, well, lasted longer than you, Mom. If you sit and think about it’s because they have LESS damage to REPAIR. There are facts that I think are correct; just from what I’ve seen dealing with this for the past years.

Well – that’s all I really got out of it… feelings of frustration were most prominent

All - in - All

I am pro-poland!

---------------------------------------------------------------------------------------------------------------------------------------------------------------

I received positive feedback from Haley, which helped.

That email was
so interesting! You are such a good writer. It sucks that this is going to take
so long. And I think your theory is right about the PPMS and the stem cells… it
makes a lot of sense!!! I just pray and pray and pray that Poland treatment does SOMETHING.

Thank you.

Hassendorf

Extremely delayed on entries / busy busy, moderately

...preperation preperation. (H) - no.

WELL

To be well. Interesting.

I have been waiting a while for tonight to come. CCSVI Information Session. Like I don't have enough right?... wrong - with the pase this is going, new information is spilled by the hour it seems. This session is brought to us by Direct-MS. I am thankful that RW is coming along, heaven knows I can't describe things very well; too much emotion about it to make full sense on a face to face basis. I am truely hoping that facebook's data is incorrect on the "attending guest" list... 20 people, not very many invited - its facebook - I do believe that people have other means of finding out information about important events that affect their lives. Regardless - it seats 900 people; I am there for more than one person, my whole family to be specific. Mom was ecstatic to know I was going, speaking to her through the phone is seemed as if she was so fuckin proud, which in turn, made me proud - not just for myself but for her too. And considering the new events that have taken place since my last blog... she SHOULD be proud of herself.

As of last week(ish)...

Journey to be less weak(ish)

Fate did this. That could be all I need to say, sufficient for me but would have the rest of you (most of you) wondering what the fuck I am blabbering about.

I am unsure if I previously described how a person finds out if they have blockages in their veins that drain the brain... to assume that I haven't - a person 100% needs to get an MRV (Magnetic Resonance Venography) this shows abonormal blood vessels, also called Stenosis. It is also recommended to get a sonogram (ultrasound) to see which way the blood is flowing... if there is a blockage in the external or internal jugular; the blood flow will be turned back into your brain causing iron deposits (now called CCSVI - FYI). It's extremely smart to get an MRI done as well - it's nice (or fucking disgusting) to know what new/progressed damages are in your brain... what is being most affected, etc.

Mom goes to Montreal on June 26th to get all of these scans done. And thank FUCKING GOD she did it when she did because they just annouced LITERALLY today that they are stopping all venagraph scans (the most important one) for people with MS. FUCKING BULLSHIT. They received a letter from Canadian Health stating the closure of this "procedure." Now I am assuming it's stirctly for MS patience because people who even have severe headaches get MRV's done. CROCK OF SHIT! FUCK YOU CANADA, not sorry - fuck you. It's damn good that they will still take previous oppointments booked before this assinine letter. Damn good. Fuckers.

With all the research that I've spewed at Mom in this last month she had sent an e-mail a couple weeks ago to the Euromedic Centre in Katowice, Poland. She gave her name, brief medical history and symptoms... within two days, TWO DAYS - they called her back and she is on the waiting list for 2011. W.O.M is fucking powerful... to have a waiting list spanning to 2011 is catastrophic considering the 'liberation treatment' only takes 4-6 days, that includes leaving home country to returning to home country.

"Everything just fell into place"

Mom said this to me the other day when she told me the news. She had been hesitant on what to do; to spend the money, take the risk, spend the money, take the time, spend the money, spend the money, spend the money. A good friend of hers from Estevan - Doug, who also has MS and they have collaberated on ideas, experiences, and advice with MS, getting stem cells, where to go, etc. Doug had began his liberation treatment search about 2 weeks before mom did... he had e-mailed the exact same place in Poland and has yet, to this day, heard back. Its sad... but when mom found out within two days that she was on that list - she knew it was meant to be. Dad whiped away all hesitation...

"It's worth it, Becky."

What a great fucking man.

Fate

Glasgow

Due to the breakdown of the immune system from previously stated meds, mom's sick.

"I haven't had the flu in over 20 years"

Result - no more meds.
Considering the pros vs. cons, reading MS blogs about people who have been on medication such as Prednisone - I think this is a good thing.

"I just really want the Liberation Treatment"

I've been reading new things daily on this treatment. Many people for, many people against (we need to wait for more info), many people angry, and with the successes to the treatment, many people happy. I dont find myself in any one of these categories, yet. I am on the fence but agree with certain aspects of each. For me, I have always been pessimistic about my mother's life with MS... with personal research, group meetings of awareness, and a little soul searching - I am hoping this negativity will die (for the most part).

With other current life events that have taken place, I find myself feeling more positive. For the sole reason that things could always be worse...

• could be sick
• could be dying
• could be poor
• could be struggling for the surivial of LIFE

I find that taking the time to think of past and present, relationships, family, etc., makes life to just be silly, ironic, sad and fucking wonderful. We are all such small people trying to do such great things and that is good! Thoughts become things. If people didn't have anything to hold onto there wouldn't be point to anything. It's so easy to look at the downs rather than the ups, but if you're alive; take it - life is LIFE and for some people it's all they have.

Stress is not worth the effects it has on a human body and mind... live in the now and embrace it because tomorrow comes too fast.

Love the little things that brighten your day because what if we never saw them again?

Föhren

Understanding MS

In all medical books to date it is known, IN THEORY, as an autoimmune disease where the body's immune system is thought to attack it's own cells therefore causing damage. Not much is known, the one answer of many asked questions is that there is considerable destruction of the meylin.

(Meylin is the white, fatty substance surrounding and protecting the nerve fibers of the brain, and spinal cord helping it function properly. Meylin can regenerate itself when damaged, but the process of this is slow)

When meylin is damaged, it causes the body to produce an inflammatory response - the formation of scar tissue (lesions) around the damaged area. Considering the regeneration of meylin is so slow, the body is generally unable to completely repair the tissue to its former, undamaged state... therefore, scarring (lesions) eventually becomes permanent. This leads to the interruption of nerve impulses.

• Example : You want to move your leg; immediately, nerve impulses flow in your brain from nerve to nerve, telling it to move...if a scar forms and interrupts the normal flow of nerve impluses it will cause an interruption in the flow of feedback.

Understanding stem cells and stem cell treatment

Stem Cells:

-A cell that has the ability to continously divide and differentiate into various other kinds of cells/tissues; this ability allows them to replace defective cells/tissues in patients who have certain diseases or defects.

-Stem cells can replicate themselves; clones!

-When a stem cell divides itself, it can remain a stem cell or give rise to other types of cells with a more specialized function - muscle cell, red blood cell, or a brain cell.

-Giving rise to a specialized cell is called differentiation

-2 types, adult stem cells and embryonic stem cells. The different between the two is their different abilities in the number and type of differentiation they can become.

-Embryonics can become all cell types of the body but the bodies chances of rejection are high as it's not their own.

-Adults are more limited to differentiating but the bodies changes of rejection are low as it's their own cells.

Stem cell treatment

There are many different kinds and different ways, the one I know most commonly is when patients are given embryonic stem cells to repair the damage that is in their body.

My mom's first time getting cells was life altering, to say the least. She was in China with my dad and her sister for a month recieving injections once a week and daily physio therapy. I believe she was given about 8,000 new stem cells. The change in her symptoms wasn't drastic - initially, but with the gruling physio and getting her muscles back to working-ish condition; she was doing stairs, only needing a wall for balance, not feeling so fatigued, etc. All in all, her symptoms seemed to retreat. This lasted maybe a month after returning home from China... Now whether or not the new cells stopped dividing or there was just too much damage happening too quickly for the cells to do anything, we don't know.

The second time getting stem cells was discouraging, to say the least. She, Nana and I were in Costa Rica for a month again, recieving stem cells. The lack of mom's response to the cells was astonishing considering she was given over 200,000 new stem cells, over half of what was given in China. Both embryonic and adipose.

(ADIPOSE is the tissue taken from a person when they have lipo suction. Contained in adipose tissue is a high cell count. In Costa Rica they do this procedure on MS patients recieving stem cells because it raises the outcome - or so it's been seen in other patients. This is basically like a HUGE BOOST of your own, healthy, rejuvenated, cells)

Our minds were boggled when the treatment wasn't doing what it should have... No questions answered either because hey - no one really knows right? It's one of those things - if it works, great! and if it doesnt, shitty... we tried / fully aware doctors don't have the answer we need. I think my family did come to the conclusion, after seeing others there do SO WELL, that it may depend on your type of MS and your progression with the disease.
Types of MS

It seemed people with RRMS or SPMS had wonderful outcome... maybe because the meylin can get an actual chance to regenerate during remissions; allowing the new cells to fix what is damaged... but with mom's PPMS never having remission - always progressing, it was a battle against something too strong for new cells and her body to keep up with.

Understanding Dr. Paolo Zamboni's findings for MS patients

(The Liberation Treatment)

He believes that MS is a VASCULAR DISEASE and that there is a link between the veins and the occurance of scars (lesions) in the brain. In MS patients, he found that malformed veins cause blood from their brain to drain improperly, sending it back to the brain, and potentially setting off the immune response that marks MS. This process is believed to cause a build up of iron to form in the brain, eventually causing scars (lesions). Zamboni studied both MS patients and 'normal' patients hoping he could find a difference between them; conclusion stated that 100% of his MS patients had abnormal veins - a condition he calls CCSVI (Chronic Cerebrospinal Venous Insufficiency). In a preliminary study done last November in Italy, Zamboni found that opening these veins with a ballon improved MS symptoms and reduced new attacks.

My thoughts

This breakthrough hit news stands last November, causing an uproar of MS patients demanding access to this procedure in Canada. But of course, controversy stirs because none of this is a proven fix or proven anything... it's word of mouth... someone getting it done and seeing HUGE, drastic results. So I guess it is understandable, medically, for doctors and the MS society not to put 100% into this. Studies have commenced in Canada and doctors urge MS patients to have patience but fact of the matter is, MS patients are sick of waiting. They were sick of waiting for clinical trials in regards to stem cells so treatment could be passed and legal in Canada so they went elsewhere... places where it was legal; Costa Rica, China, Mexico - pretty much anywhere BUT North America. Taking money out of their pockets for risk and hope. Nothing in stem cell treatment was ever proven to cure, ever - not even close... it was all word of mouth, other people's experiences, and it not being legal in their own damn country! But at least it was SOMETHING. Just like this new theory... it's SOMETHING. So now, again - MS patients are traveling because they don't want to wait years for science when they can go other places... Poland, India, Italy for this non-proven, non-curable, non-lasting treatment. It's another little shimmer of hope that they don't have to live everyday like they have been.

I do believe that this holds more truth to solution for people with ALL types of MS. Stem cells treatment is such a complicated thing while this new treatment for CCSVI is simple, and cheap... if done in Canada because you're not looking at plane costs to get anywhere far. Treatment for CCSVI consists of an MRI scan, Ultrasound scan or something of the sort to see if you have narrow veins then surgery, and people, this surgery is like getting a wart removed.. they go in and put a balloon in that will slowly, in time, deflate - which is ok! Cuz if this procedure was passed in North America, to go and do it again, wouldn't be a problem. All-in-all, I think humans are extrodinary fighters.

Whether it's here or thousands of miles away,

expensive or more expensive,

safe or dangerous,

curable or not,

people are gunna do what they see fit to survive.

Ecuador

Driving home from the hockey game lastnight, conversation relating to knowing someone with cancer sparked.
One had mentioned,

"If I knew anyone with cancer, my head would be
shaved instantly"

Hm - I wonder why this thought had never crossed my mind. Maybe because my lack of faith in organizations such as the MS Society of Canada is less than point zero... I mean really - what are they doing? My mom has been trying for years and years and years and years and... fuckin' years to be a lab rat for the MS Society, not having to pay to get medicines tested on her, or shit - even pay and just have some hope that "this might work!" or "I want to help this research team."
Application after application sent to the MS Society for their "new breakthrough clinical study - MS patients needed." We would all hope and wait anxiously that mom could get in and get helped...
Rejected.

"Dear Rebecca Kelly,
We regret to inform you that you do not meet
the needs of our clinical study at this time"

(or ever)

REALLY?!
She has MS, you are the MS SOCIETY OF CANADA - and you are rejecting PEOPLE who SUFFER with MS because they dont meet certain qualitifications?!?!
-fuck you

REALLY?!?!
Is she too sick? Too many symptoms? Too high-risk? We all hope that answer is a forever, "no" - but what kind of message are you sending these people? You ask of us to donate, donate, donate and we do; MS Walk yearly, raising money for a better cause... a cause we have yet to benefit from after 10+ years of trying to.
-fuck you


This entry is a little heavy, but Im not sorry. I find organizations like this to be a waste of time and I wish for the life of me that I didn't. Some things just never change and it's a fucking shame. We live in a world of false information and rude awakenings; politics run our doctors who control our medicines and just want more money for less and less. Everyone's wanting the bigger buck at the cost of anything and anyone.
You're guily of it & I'm guilty of it.

"It's time for us as a people to start makin' some changes..."

Dublin

Bladder.

Cancer.

Dad.

-Not a fun mix of words

But it makes ya wonder!

Facts/Info:

1. Cells. Our body grows them as needed and when old ones die, new ones take their place. (cute)
2. Tumors form when our bodies grow cells when we don't need them, not letting the old ones die when they should.
3. Two kinds of tumors: Benign - NOT cancer. Malignant - cancer.
4. Benign - Cells do not spread, the tumor does not come back once removed, and it is not life-threatening.
5. Malignant - COMPLETE OPPOSITE. Shit can spread into the bloodstream or lymphatic system causing new tumors different places in the body, tumors come back after removed, and of course, is life-treatening.
6. Metastasis - the spread of cancer.
7. If the cancer metastasizes - we'll say into the lungs - this is not known lung cancer because it's still bladder cancer cells, it is known as metastatic bladder cancer.
8. Bladder cancer is most common in men (two to three times more likely).
9. It has a reoccurance rate of 50%-80%, making it a lifelong surveillance and the most expensive cancer to treat on a per patient basis.
10. If the first round of tumors are malignant, the reoccurance is higher then those benign and the chance of them continuously being malignant is great.

The situation at hand:

1. Urination found in blood, a long delayed process of piss tests.
2. Waiting and worried.
3. New doctor.
4. Immediate piss test and first spot in the hospital for a scope to see what's in the bladder.
5. Found several large tumors in the bladder.
6. Surgery.
7. Off work for a month.
8. Biopsy found tumours to be malignant.
9. Few months later, another scope.
10. Couple more tumors found.
11. Surgery.
12. Off work for a month.
13. Hospital for shots of something that kills off tumours (unsure of what is was) - duration 2 weeks, 3-4 times a week.
14. Few months later and after eating healthy - cut down on red meats and juiced regularily, another scope.
15. No tumors found :)
16. Pre-cautions; back to hospital for those shots.
17. Few months later, another scope.
18. Small tumors found.
19. Surgery.
20. Off work for a month.
21. Biopsy found tumors to be malignant.
22. Back to the hospital regularily for those shots.
23. Few months ago, another scope.
24. Small tumors found.
25. Surgery; during this time they directly injected Chemo into his bladder.
26. Off work for a month.
27. Biopsy found tumors to be malignant.
28. Few weeks ago, another scope.
29. Small tumors found.
30. Waiting for surgery date.
31. Waiting for biopsy.
32. Doctors will do the same procedure as last - Chemo shots directly into his bladder.

There are plenty of downsides to all of this... but if any of you out there have common sense and know me; you know what my thoughts are. Two parents with uncurable diseases... yadda yadda... money issues... security issues... fucking zero health insurance because they are BOTH "high risk"

.... My feelings and thoughts to that consist of sorrow to all of the sick people out there who need health insurance more than I do, I mean I haven't been to a doctor for months and months - I don't need health insurance, my parents do. It disgusts me. All in all; that aspect could be worse, we could live in America and my parents would get zero health attention.

"As long as I got billz, right doc?"

As stated before, if you know me - you know that I do have a tight-knit family; we are loving, supportive and positive. Sure, sometimes we think, "when is enough, enough?" but what's the point really?

You can't get too mad, upset or discouraged at what life throws at you or you'll never be ready for that next toss.

Casablanca

Mothers new pill plan

Prednisone - steroid
25 pills taken every other day.
Can be used in autoimmune diseases

Common Side effects:

• increased appetite
• indigestion
• nervousness / restlessness

Less frequent side effects:

• darkening or lightening of skin color
• dizziness or lightheadedness - current MS symptom
• flushing of face or cheeks - current MS symptom
• hiccups - current MS symptom
• increased sweating
• sensation of spinning - currentMS symptom

Less common side effects:

• decreased of blurred vision - current MS symptom
• frequent urination - current MS symptom
• increased thirst - current MS symptom

Rare side effects:

• confusion
• excitment
• false sense of well-being
• hallucinations
• mental depression.... who wouldn't be under the circumstances?
• mood swings
• restlessness... wasn't this a common side effect?
• skin rash or hives

Additional side effects:

• abdominal or stomach pain or burning
• ache
• changes in vision
• bloody or black stools
• eye pain
• filling or rounding of the face
• headache
• irregular heartbeat
• menstural problems
• muscle cramps or pains
• muscle weakness - current MS symptom
• nausea
• pain in torso
• reddish purple lines in body
• redness of eyes
• sensitivity to light
• swelling of feet or lower legs - current MS sympton
• tearing of eyes
• thin, shiny skin
• trouble in sleeping - current MS symptom
• unusual, easy bruising - current MS symptom
• unusual increase in hairgrowth
• unusual tiredness or weakness - current MS symptom
• vomiting
• weight gain
• wounds that will not heal
  

"My immune system attacks itself, Prednisone breaks down my immune
system, further slowing the progression of Multiple Sclerosis"

...

Ditropan - oxybutynin
1 pill daily
Used to treat symptoms of overactive bladder

Serious/severe side effects:

• hot, dry skin and extreme thirst
• severe stomach pain
• constipation - current MS symptom
• pain or burning when urinate
• urinating less or not at all
• allergic reactions
• confusion
• fast or irregular heatbeat
• fever
• halluciations
• mental or mood changes
• seizures
• swelling of feet - current MS symptom
• vision problems - current MS symptom

Common side effects:

• dry mouth
• dry eyes
• blurred vision - current MS symptom
• mild constipation - current MS symptom
• diarreah
• nausea
• dizziness, drowsiness, weakess - yup
• headache
• sleep problems - check
• runny nose
• trouble sleeping - affirmative

Methotrexate

6 pills daily

Iterferes with the growth of certain cells in the body, especially ones that grow quickly; cancer cells, bone marrow cells, and skin cells.

Common side effects:

• acne
• chills and fever
• dizziness - current MS symptom
• flushing
• general body discomfort
• hair loss
• headache
• infertility
• irregular periods
• itching
• loss of appetite
• lowered resistance to infection
• miscarriage
• nausea
• sensitivity to sunlight
• sore throat
• speech impairment
• stomach pain
• swelling of breasts
• unusual tiredness - current MS symptom

Severe side effects:

• allergic reactions
• bloody or black stools
• blood in urine
• bone pain
• calf pain
• change in the amount of urine
• chest pain
• confusion
• dark urine
• diarrhea
• dry cough
• enlarged glands
• fatigue - current MS symptom
• fever or chills... wasn't this common?
• inflammation of the pancreas
• irregular heartbeat
• mental changes
• mouth sores
• muscular weakness - current MS symptom
• alskfjdasljdf etc., etc., etc.,

The upsides to downs

Aside from receiving stem cells twice, progressing into a current worsening state, 100+ grand spent, side effects that could potentionally make matters of MS worse, and an every day (known as normal) struggle; Day 1 of Prednisone : Mom has NEVER felt so good. Seems small to most... but it's huge. THAT is huge! Regardless of the downs (FUCK THE DOWNS)

that

woman

deserves

good days.