20111223

Infusion so good

I forgot to post about it. I was back to my usual AIC nurse, Michele. And although she is a Packer's fan, she is the nicest one I know, and she is champ at getting me in one needle stick! Sweating hands and all...you want to see a physiological reaction to trypanophobia, come visit me on infusion day prior to injection! Not that everyone else there is bad, it's just that my veins run & hide due to the anxiety that sets in due to needles. I frickin' hate them! And I picked the wrong chronic disease for hating needles. Oh wait...I didn't have one iota of choice in the matter : /

20111128

TL: Xmas tree!

x-post from MjNet.

20111020

From yesterdays infusion

A needle in my right AC vein
ouch
But I have to give a big thank you to Jayne at the AIC, the brilliant woman waited until I was done with my treatment to take my BP, and it was...wait for it...137/71!!! My BP is within normal range! Frickin' brilliant Jayne! You will never know how much you've done for me!

20111014

Damn vampires!

I thought the coast was clear for this appointment, but then my neurologist asked me about the Stratify study. Bahhh! Blood draw!!! At least it was for the furthering of Multiple Sclerosis research. Everything was nominal otherwise. He was, as expected, pleased with the effectiveness of the Tysabri (Natilzumab) treatment. Then he mentioned a pill called BG-12. A pill!!! It's only in phase III trials ATM, but its A PILL that shows progress! I can't wait for that to be available, as long as it is at least as effective as Tysabri.

20111012

The Neurologist...again

I've got another appointment with my neurologist on Friday. I'm sure it'll be just another how ya doin'...ok? good! type appointments, with which I am fine. I'm not sure Ill not have much about which to talk, as usual. That seems to be what MS has taken from me most....my sociability *sigh*. That and I have a hard time remembering things. At least it's been somewhat forgiving!

20110928

Infushin masheen

Just thought I'd share what the IV machines/poles that I have to see for ~two hours every four weeks. IV pole

20110922

The AIC can be a depressor

I get infused every 28 days, which is fine. The real issue I have is being included with all the sick & elderly that are near death. I feel bad for them, but it is a near monthly reminder that death is coming for each and every one of us. Depressing!

20110920

Awww yeah

The fight for a free Illinois is back on! State representative Lou Lang and former state's attorney Senator William Haine, you deserve a big thank you from the people of illinois!

Here is the text of the postcard which they want distributed: Dear Legislator: Seventeen states and the District of Columbia have laws in place to allow seriously ill individuals suffering from debilitating illnesses to alleviate their symptoms through the use of medical cannabis. Under Illinois law, however, patients with HIV/AIDS, cancer, or multiple sclerosis who use medical cannabis are subject to arrest and possible jail time, even if their doctors recommend it. You can put an end to this cruel practice by supporting the Compassionate Use of Medical Cannabis Pilot Program Act sponsored by Rep. Lou Lang and former state’s attorney Sen. William Haine.

Beautiful, non-partisan, purely fact-based. How could you not support legalized medical cannabis for those of us suffering from one of the above mentioned diseases.
Edit: Holy crap, the blink tag still works in mozilla browsers! For those of you still unfortunate enough to still be using IE are not able to see the multiple sclerosis tag blinking. Use firefox!

20110905

Today is a historical day

A historical day in my wife's and my life anyway. It marks the one year anniversary of Shelby and my decision to start leading a healthier life. One year ago today, the love of my life and myself decided to quit smoking! That means as-of today we are officially non-smokers! MFing woot! Good job Shelby! Good job myself! I knew we could become non-smokers as long as we had the proper motivator!
No Smoking!
(Re-post from my site)

20110904

20110826

Another one done!

Had yet another infusion, as expected, yesterday at the hospital. Everything was fine, only one stick, food was good (had a gargantuan lunch: Pizza, Ham & Cheese sandwich, mac & cheese, soup and chocolate milk with a dessert of two cookies, big thanks Michele!), the only problem was after being stuck with needles two times in the past two weeks (this made it the third), I am still very freaked out by needles. You would think that by now I'd be used to them, but no, its still the usual course of veins are clearly apparent the night before, but when I wake up they are hiding. I know it will only hurt momentarily, but I just can't get past that initial anxiety. I fear I'll be using diazepam for the length of my treatment on Tysabri (or some other injectable medication).

I also recently heard the one oral option for MS treatment, Gilenya [Fingolimod], really tanks your immune system, and any sort of infection is easy to acquire. Scary, but so is PML

20110817

Oh drats!

So I got a blood test yesterday at the request of my neurologist's office. Wasn't that bad..however...I had a physical with my GP today, which went pretty well overall. However, the blood test my neurologist gave me didn't give enough information for my GP's liking, so I will be going back for my second blood test this month : /

I still hate needles to this day!

Then I had an accident on my bike coming home from Jewel. Apparently, I had too much weight in my backback*, which threw me over the handlebars when I tried to ride. Other than a skinned shin, a battered hip and some sore ribs, I'm OK...I think. Here is a pic of my leg

* I had in my backpack:
2 gallons of milk
2 64 fl oz Apple Juice
1 64 fl oz CranGrape Juice
1 64 fl oz Cranberry Juice
(roughly 35 pounds...try it)

I also carried in a plastic Jewel bag:
1 64 fl oz Sunny D
1 59 fl oz Florida's Natural Orange Juice - Made with US oranges!



(Jewel is a grocery store, for those who aren't familiar with Greater Chicagoland)

20110728

Infusion day

And I'm up early (thanks to Zie) - Pre-infusion post, who would've thought? Hopefully I can take a nap...which is dependent on an easy needle stick. Although I don't really feel too good about spending my 2 honestly free hours per month sleeping...then again spending those hours connected to an IV isn't ideal either. C'mon luck/skill of the AIC nurse! I'm hoping this is a good day to be stuck!

20110722

What TK is for (and for what it is not)

Tainted Kernel is for:
Me to have a place to log my experiences dealing with the disease that affects me: multiple sclerosis

Tainted Kernel is NOT for:
Advertisers to place advertisements to their webpages or products.

Are we clear on that fact? This site, along with all of my MjNet sites, is not for promoting your product!

20110714

Having MS is $$$$$

If you want to treat it with an outrageously priced medication. I had two trips this month, and my standing balance with the hospital is...wait for it...an astounding $15,2xx.xx! FFS, its costing me (or my insurer) over $7500 everytime I set foot in that hospital!

At least it makes me a little warm inside to know that my insurance is mostly covering the cost of disease. They make it possible for me to continue leading a normal life. For that, I thank blue cross/shield. Sorry the drug companies are being so greedy!

Another thought...I wonder how much it is costing the hospital to print all these bills they must be sending out? It must be astronomical!
Not to mention the cost in trees.

20110630

Another 28 days

Another infusion down. Michelle* got me with an easy single stick. Thank you Michelle!

I have my physical in the middle of August. All is going well.

I spell Michelle as Michelle, unless I am told otherwise by that person.

20110616

No correlation between stress and MS

Well with another theory blown out the window by the NMSS (and in which I did not hold much hope), we progress further down the MS hole. Will there be a finding of a cure or cause in my lifetime.

With big pharma raking billions of $s in profits for making a treatment, I don't think it'll happen.

20110615

Day two

So my doctor (neurologist) put me on a new medication to help control my fading memory problem after I talked to him on Monday. I'm not saying which drug it is, just to be clear on that fact, but it is 10mg /day, which was awesome, it really really picked my energy up for about six hours. Didn't have any nasty crash, but I was up until about 330 this morning! Today I'm going to break it in two, and take 5mg in between coffees, and then again at two. Hopefully that'll be a bit more leveled out instead of the intense surge that was yesterday. And we'll see how I go to sleep, if I have trouble going to sleep, ingestion will have to come much earlier in the day.

20110607

Big thanks to Service One

Thanks to Sandy, Gord and Service One for their gracious donation to my Walk MS page. You've made my goal!


Service One


Thanks Service One!

20110604

Its been a long time

Since I've had multiple sticks. Yesterday's infustion was a horror show. Four total sticks, finally went in the AC : ( Look

In the wrist:

In the left hand:

In the right hand:

And finally, in the right ac

20110527

O Canada

Thank you for supporting World MS day!


And thanks to Niagara Falls USA for the pic!

20110505

Thank you Lou Lang

For trying to break the stigma and provide relief to those of us who are suffering a chronic, debilitating disease. Ultimately, the bill failed. Representative Lang says he will reintroduce a revamped bill in the December session.

Another simple infusion

Yet another simple needlestick thanks to the expert in the AIC (that's you Bujana [sP?]).

20110503

Thanks FDA

Thanks for making tysabri packaging have a warning label over PML. You do realize I, as a tysabri patient, never see the packaging in which it comes. I'm sure the rest of the people using tysabri don't see the packaging either. All we see is a covered iv bag, so I have to say thanks for nothing FDA!

20110502

Walk MS 2011

We went to walk MS today, in St. Charles, IL this time! It was nice and quaint...and longer than the walk in downtown, Chicago. The only problem, and I dare say this, were the bicycles.

Here are the few pictures I took.

Thanks to those who joined us and those who donated to the cause.

20110424

Dr. K was right about PML risks.

I just saw an article on Y! health about PML risks being a sort of hump type graph, if you will. That co-signs what Dr. K told me. That is reassuring. 3 Years is the highest risk, which is the period I am nearing. Joy! I suppose I just need to get through the third year before I feel a bit better.

Oh, and it's my birthday ; )

20110423

Well things have been going well

Things have been going quite well for me. The needlesticks have gone easy the first time for almost the past half-a-year or so. No problems to report episode-wise. The only issues with which I am grappling are the PML issue and memory issues.

20110224

Government is calliing for cuts to NIH funding

Which directly affects Multiple Sclerosis (MS) sufferers. If you suffer from MS, know somebody who does or are just sympathetic to our plight, please contact your representative and implore them to not cut NIH funding.

20110218

85 WIA, 10 KIA

If the war included military action that is how the report would read, but we're not talking about military action.

In the war against MS, 10 more people have given their lives in a means for an effective treatment. Another 85 developed the deadly brain disease PML, but did not die.

My personal risk of developing PML while on Tysabri, after confirmation of the presence of JC virus antibodies in my blood via the stratify study, is about 1/600. Again, those odds aren't good at all, but do I want to waste away from MS instead of fighting it?

20110216

The following was an email I recieved re: CCSVI

Cardiovascular and Interventional Radiological Society of Europe Commentary on the Treatment of Chronic Cerebrospinal Venous Insufficiency
CardioVascular and Interventional Radiology
© The Author(s) 2010
10.1007/s00270-010-0050-5
CIRSE Commentary
Cardiovascular and Interventional Radiological Society of Europe Commentary on the Treatment of Chronic Cerebrospinal Venous Insufficiency

J. A. Reekers1 Contact Information, M. J. Lee2, A. M. Belli3 and F. Barkhof4
(1) Department of Radiology, AMC, University of Amsterdam, Amsterdam, The Netherlands
(2) Department of Academic Radiology, Beaumont Hospital, Dublin, Ireland
(3) Department of Radiology, St. George’s Hospital, London, England
(4) Department of Radiology, MS Center Amsterdam, VU University Medical Center, Amsterdam, The Netherlands

Contact Information J. A. Reekers
Email: j.a.reekers@amc.uva.nl

Received: 1 November 2010 Accepted: 3 November 2010 Published online: 7 December 2010
Abstract
Chronic cerebrospinal venous insufficiency (CCSVI) is a putative new theory that has been suggested by some to have a direct causative relation with the symptomatology associated with multiple sclerosis (MS) [1]. The core foundation of this theory is that there is abnormal venous drainage from the brain due to outflow obstruction in the draining jugular vein and/or azygos veins. This abnormal venous drainage, which is characterised by special ultrasound criteria, called the “venous hemodynamic insufficiency severity score” (VHISS), is said to cause intracerebral flow disturbance or outflow problems that lead to periventricular deposits [2]. In the CCSVI theory, these deposits have a great similarity to the iron deposits seen around the veins in the legs in patients with chronic deep vein thrombosis. Zamboni, who first described this new theory, has promoted balloon dilatation to treat the outflow problems, thereby curing CCSVI and by the same token alleviating MS complaints. However, this theory does not fit into the existing bulk of scientific data concerning the pathophysiology of MS. In contrast, there is increasing worldwide acceptance of CCSVI and the associated balloon dilatation treatment, even though there is no supporting scientific evidence. Furthermore, most of the information we have comes from one source only. The treatment is called “liberation treatment,” and the results of the treatment can be watched on YouTube. There are well-documented testimonies by MS patients who have gained improvement in their personal quality of life (QOL) after treatment. However, there are no data available from patients who underwent unsuccessful treatments with which to obtain a more balanced view. The current forum for the reporting of success in treating CCSVI and thus MS seems to be the Internet. At the CIRCE office and the MS Centre in Amsterdam, we receive approximately 10 to 20 inquiries a month about this treatment. In addition, many interventional radiologists, who are directly approached by MS patients, contact the Cardiovascular and Interventional Radiological Society of Europe (CIRSE) for advice. Worldwide, several centres are actively promoting and performing balloon dilatation, with or without stenting, for CCSVI. Thus far, no trial data are available, and there is currently no randomized controlled trial (RCT) in progress Therefore, the basis for this new treatment rests on anecdotal evidence and successful testimonies by patients on the Internet. CIRSE believes that this is not a sound basis on which to offer a new treatment, which could have possible procedure-related complications, to an often desperate patient population.
Introduction

CIRSE believes that the CCSVI theory in its current form has a number of inconsistencies. The core of this new theory is the CCSVI syndrome, i.e., abnormal venous drainage from the brain. However, venous drainage from the head has an impressive anatomic variation, which has not been well catalogued in most textbooks. In addition, valves can be present at a variety of sites in the head and neck veins. Indeed, interventional radiologists who practise parathyroid sampling know about this huge variety in venous anatomy. In addition to the huge variation in normal venous anatomy, the jugular veins have some natural narrowing at two sites, and the azygos vein, so prominent in CCSVI theory, does not drain the brain at all. The azygous vein obviously can drain the spinal cord, but not solely, because many intercostal venous collateral veins fulfil the same function.

In addition, the fact that this imaging is performed with the patient in the supine position has a great influence on blood flow and image interpretation. There recently have been randomised studies comparing so-called “venous stenoses” in patients with and without MS [3, 4]. Both studies showed that there was no difference in the prevalence of venous stenoses between the two groups. This seems to be a strong argument against the existence of CCSVI. However, those physicians performing CCSVI treatment point out that these studies were not performed according to the VHISS criteria. The other part of the theory is that the venous outflow obstruction must be treated. However, if there is a real haemodynamic venous outflow obstruction, there should also be a pressure gradient, and this gradient should disappear after successful balloon dilatation. It has been shown, and confirmed by those who perform balloon dilatation for CCSVI, that over the so-called “stenosis” there is never a measurable pressure gradient. Again, those who perform this treatment will say that it is not the pressure gradient but the change in outflow pattern caused by this stenosis that is the pathologic entity.

What remains is the issue of anecdotal successful treatments. Undoubtedly, some patients obtain symptom relief after treatment for CCSVI, but this could easily be just a placebo effect. Many treatment successes in medicine are based on or helped by a placebo effect. In itself, there is nothing wrong with the placebo effect as long as we recognize that this is at play. It is also known that the more invasive the treatment and the more the treating physician believes in the treatment, the stronger the placebo effect is. Furthermore, MS can affect emotional and labile responses and is characterized by spontaneous relapses and remissions. This makes the gathering of scientific evidence to support CCSVI theory difficult in anything other than an RCT.

What we now have is the dilemma of a new treatment being promoted and performed by some early pioneers, with the popular press trumpeting its success and thus decreasing the chances of performing a properly conducted trial because it is considered unethical not to offer patients this new and promising treatment. The primary task of physicians is primum non nocere or not doing harm. We believe that harm can be caused by offering treatments without any scientific proof of efficacy as well as the more usual forms of medical harm. Pseudo-arguments such as “There is nothing else” or “Do you know how much they pay for medication that does not work?” are not valid and scientific arguments.

Confronted with these contradictions and lack of evidence for CCSVI treatment, some pioneers have taken to calling their work on MS patients a “phase 1 study.” However, a phase 1 study without a protocol, that has not been approved by a medical ethical committee, that does not require informed consent, and that does not have safety committee oversight does not qualify! CIRSE believes that only properly conducted trials with significant scientific rigor can solve this dilemma. We at CIRCE believe that a small prospective randomised trial, with a sham arm, is required. A trial monitored by an independent society, such as CIRSE and/or the European Society of Neurology, would be ideal.

As doctors and interventional radiologists, we certainly hope that all of the anecdotal reports detailing improvements in QOL will prove to be true and that patients will benefit from this new treatment. Interventional radiologists have a long history of introducing pioneering treatments during the last 30 years that have proven to be of enormous benefit to patients. Recently new treatments, such as fibroid embolization, vertebroplasty, and carotid stenting, have all been interrogated by randomized trials. We believe that CCSVI treatment should be evaluated in the same manner. Furthermore, we believe that until real scientific data are available for CCSVI and balloon dilatation, this treatment should not be offered to MS patients outside of a well-designed clinical trial.
Open Access This article is distributed under the terms of the Creative Commons Attribution Noncommercial License which permits any noncommercial use, distribution, and reproduction in any medium, provided the original author(s) and source are credited.

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Original Authors listed (attribution), and this is a non-commercial site, so I'm guessing I can repost according to the Creative Commons license listed.

20110212

Oh and

My infusion on Friday went pretty good, except for me being late due to the neurologist appoint I had previously mentioned. They've all been quite well lately. Hopefully I haven't jinxed it.

20110211

I had a neurologist appointment today

And I was told that I had tested positive for the JC virus antibodies. This effectively doubles my chance of developing PML. That is bad news. 1/1000 to 1/500 (I believe that my neurologist, based on my history, put me at about 1/600). Still not good odds. 1/1000 is bad!

My neurologist offered to put me on gilenia (fingolimod), but since its a brand new drug, I'll let the people who need it most be the guinea pigs. I could always go back to an ABC, but those suck.

Luckily The way that PML is detected is via MR. I'll talk to him next time about moving MRIs up to every six months.

If you're interested, I found out via the Stratify study

20110209

Guinea pig

My wife, as you all know, is an MR tech at NCH. They got a new scanner at her work and they ran the battery of tests on me. Of all the fantastic things that I saw are out of this world, such as the DTI nerve fiber tracking and brain profusion. MRA & MRV. It was unreal. But one image I thought most interesting, to me anyway, was that of the MS fingerprint.


MS Fingerprint

Can you see it?