Wednesday, June 18, 2014

Could Fasting Prevent Relapse?

What are the odds of a relapse? This is among the many questions I've received from MS patients who are considering HSCT. I wish I had a definite answer, but I don't. All we know is based on 10 years of limited patient data. From that, we can guess hopefully that relapses after HSCT are unlikely, but possible.  And there's a chance of getting a secondary autoimmune disease like Grave's disease (10%?). Again, we don't know for sure. Patient population data is still being collected and will be for many years.

A review of the scientific literature seems to indicate that getting MS is a two-step process. First, you must be genetically susceptible. Second, there's exposure to an environmental trigger. I know I have the genes because my mom has MS. But what triggered it is a mystery. Suspects include Vitamin D deficiency as an infant,  mononucleosis, mosquito-borne illness, food poisoning, ag chemical and solvent exposure, fatty foods, sugar, stress, beer? Yea, I've had all of those and more.

So now that my immune system has been reset by HSCT, what triggers do I need to avoid? All of the above? That's the million-dollar question that no one really knows the answer to; though there are plenty of gurus who would love to sell me a paleo gluten-free diet book for $29.95, or a stress-reducing transcendental meditation program for $3,000. Paranoia could easily set in and gut what's left of my bank account.

Dr. Burt told me to just live, eat a normal healthy diet and don't worry about it. He believes it's unlikely that a person will be exposed to the same triggers twice in one lifetime. I hope he's right. Life is meant to be lived without fear. Nevertheless, I'll minimize my trigger exposures as best as I can. There's really no downside to a healthier diet, and I won't miss my years of applying ag chemicals in mosquito swamps.

But what if I could give my immune system a tune-up every now and then? As it turns out, there's some research going on at the University of Southern California that might point the way to just such an opportunity. Best of all, it doesn't require more chemo and doesn't cost a thing.  Just don't eat for three days twice a year. Read about it below. There's also a video of professor Longo detailing how the program can help cancer patients on chemo. It's quite fascinating.




Fasting triggers stem cell regeneration of damaged, old immune system

Protection from chemotherapy immunosuppression indicates effect could be conserved in humans

Wu_Suzanneby Suzanne Wu
Researcher Valter Longo at work
Corresponding author Valter Longo (USC Photo/Dietmar Quistorf)

In the first evidence of a natural intervention triggering stem cell-based regeneration of an organ or system, a study in the June 5 issue of the Cell Stem Cell shows that cycles of prolonged fasting not only protect against immune system damage — a major side effect of chemotherapy — but also induce immune system regeneration, shifting stem cells from a dormant state to a state of self-renewal.
In both mice and a Phase 1 human clinical trial involving patients receiving chemotherapy, long periods of not eating significantly lowered white blood cell counts. In mice, fasting cycles then “flipped a regenerative switch,” changing the signaling pathways for hematopoietic stem cells, which are responsible for the generation of blood and immune systems, the research showed.
We could not predict that prolonged fasting would have such a remarkable effect in promoting stem cell-based regeneration of the hematopoietic system.
Valter Longo
The study has major implications for healthier aging, in which immune system decline contributes to increased susceptibility to disease as people age. By outlining how prolonged fasting cycles — periods of no food for two to four days at a time over the course of six months — kill older and damaged immune cells and generate new ones, the research also has implications for chemotherapy tolerance and for those with a wide range of immune system deficiencies, including autoimmunity disorders.
“We could not predict that prolonged fasting would have such a remarkable effect in promoting stem cell-based regeneration of the hematopoietic system,” said corresponding authorValter Longo, Edna M. Jones Professor of Gerontology and the Biological Sciences at the USC Davis School of Gerontology and director of the USC Longevity Institute. Longo has a joint appointment at the USC Dornsife College of Letters, Arts and Sciences.
“When you starve, the system tries to save energy, and one of the things it can do to save energy is to recycle a lot of the immune cells that are not needed, especially those that may be damaged,” Longo said. “What we started noticing in both our human work and animal work is that the white blood cell count goes down with prolonged fasting. Then when you re-feed, the blood cells come back. So we started thinking, well, where does it come from?”

Fasting cycles

Prolonged fasting forces the body to use stores of glucose, fat and ketones, but it also breaks down a significant portion of white blood cells. Longo likens the effect to lightening a plane of excess cargo.
During each cycle of fasting, this depletion of white blood cells induces changes that trigger stem cell-based regeneration of new immune system cells. In particular, prolonged fasting reduced the enzyme PKA, an effect previously discovered by the Longo team to extend longevity in simple organisms and which has been linked in other research to the regulation of stem cell self-renewal and pluripotency — that is, the potential for one cell to develop into many different cell types. Prolonged fasting also lowered levels of IGF-1, a growth-factor hormone that Longo and others have linked to aging, tumor progression and cancer risk.
“PKA is the key gene that needs to shut down in order for these stem cells to switch into regenerative mode. It gives the OK for stem cells to go ahead and begin proliferating and rebuild the entire system,” explained Longo, noting the potential of clinical applications that mimic the effects of prolonged fasting to rejuvenate the immune system. “And the good news is that the body got rid of the parts of the system that might be damaged or old, the inefficient parts, during the fasting. Now, if you start with a system heavily damaged by chemotherapy or aging, fasting cycles can generate, literally, a new immune system.”
Prolonged fasting also protected against toxicity in a pilot clinical trial in which a small group of patients fasted for a 72-hour period prior to chemotherapy, extending Longo’s influential past research.
“While chemotherapy saves lives, it causes significant collateral damage to the immune system. The results of this study suggest that fasting may mitigate some of the harmful effects of chemotherapy,” said co-author Tanya Dorff, assistant professor of clinical medicine at the USC Norris Comprehensive Cancer Center and Hospital. “More clinical studies are needed, and any such dietary intervention should be undertaken only under the guidance of a physician.”
“We are investigating the possibility that these effects are applicable to many different systems and organs, not just the immune system,” said Longo, whose lab is in the process of conducting further research on controlled dietary interventions and stem cell regeneration in both animal and clinical studies.
The study was supported by the National Institute of Aging of the National Institutes of Health (grant numbers AG20642, AG025135, P01AG34906). The clinical trial was supported by the V Foundation and the National Cancer Institute of the National Institutes of Health (P30CA014089).
Chia Wei-Cheng of USC Davis was first author of the study. Gregor Adams, Xiaoying Zhou and Ben Lam of the Eli and Edythe Broad Center for Regenerative Medicine and Stem Cell Research at USC; Laura Perin and Stefano Da Sacco of the Saban Research Institute at Children’s Hospital Los Angeles; Min Wei of USC Davis; Mario Mirisola of the University of Palermo; Dorff and David Quinn of the Keck School of Medicine of USC; and John Kopchick of Ohio University were co-authors of the study.



Thursday, June 12, 2014

Publication Bias? Did it work?

Nobody tells you they bought 100 losing lottery tickets or lost big at the casino. Everyone loves a winner, and losers just hunker down under a rock. Likewise, it's rare that anyone writes a blog about how they did a medical procedure that didn't work. The last thing a wounded body needs is wounded pride.

But it's not just individuals. There's a phenomenon called publication bias that the medical science community is becoming increasingly concerned about. When positive research results are reported, but negative results get buried, patients and doctors don't really know whether a drug or medical procedure is worthwhile. The equivalent terminology many of my marketing and journalism peers know is cherry-picking. Clients and people want good news, so that's what editors provide.

Also, there's a certain amount of peer pressure amongst patients to stay positive. Heck, as individuals, patients NEED to stay positive, sometimes to the point of denying the reality of side-effects or disappointing recovery. Just before I went to Chicago for HSCT, a friend asked "What if it doesn't work?" Even though this was a reasonable question, I had to restrain myself from attempting violence (mostly because I would have simply fallen flailing out of my chair). I then calmly explained all the literature reviews that confirm an 85% success rate of the procedure.

So what about me?  Did HSCT work? Well, five months post treatment, I can honestly say that I'm far better than I was before the procedure. The electric wheelchair still sits in my condo unused. The nursing home walker is a clothes drying rack, double vision is gone, and I'm not pissing myself anymore. I'm working more, and occasionally I take my motorcycle for a spin. One time I dropped it due to clumsiness in the parking ramp, but was able to pick it back up again by myself. Not bad for a 472-pound bike.

Still, I'm far from where I want to be. Walking is improving, but I still carry a cane when I go out.  Tripping happens way too easily. Stairs and uneven pavement are a challenge. Running only happens in my dreams. And even though I haven't used it for months, it's too early to donate the wheelchair yet. The specter of a possible relapse still haunts me, and wheelchairs are devilishly hard to get.

Mid-July is my 6-month checkup with Dr. Burt. I expect the exam and the MRI to confirm what I already feel – the aggressive MS attacks have been stopped and I no longer need MS drugs of any kind. I reviewed this article and video today. I'm looking forward to seeing the team who saved my life.  As Dr. Burt checks up on patients like me, he keeps pressing on with his research. If my recovery seems maddeningly slow, I remind myself that his research studies have taken decades to bring HSCT closer to reality for thousands more MS patients. The world and I appreciate his dedication.

Dr. Richard Burt 




The Dr. Richard Burt Story – Lost Memories, Opening Doors
As a Fellow working at Johns Hopkins Hospital in Baltimore, Dr. Richard Burt noticed that the leukemia patients he was helping treat needed to be “re-vaccinated” because the protection from childhood diseases like the measles and mumps was being lost.  The cells impacted by transfusion treatments were losing the “memory” of these original childhood vaccinations.
“Maybe,” thought Dr. Burt, “if we could get bad, diseased cells to lose their memory, we could reprogram them with ‘good’ memories and help patients with autoimmune diseases.” This reprogramming would depend on adult stem cells—tiny building blocks found in the body--if it was going to work.   
He first tried out his idea on animals in the research lab and—it worked!  Not long afterwards the FDA gave its approval for the adult stem cell therapy to be used on people suffering from Multiple Sclerosis, and again, it worked.  Now, 14 years later, Burt and his team of researchers at Northwestern University are using this technique to help treat patients suffering from some 23 different diseases.
“It’s also (adult stem cell therapy) ongoing in centers around the world,” says Dr. Burt.  “So it’s turned out to be very rewarding.  Very rewarding to see people coming back and see how much they’ve improved.  And very rewarding that other centers are doing it.  There’s an old adage that success has many fathers, failures and orphans.  So the very fact that this is now being done around the world--in South America, Asia, Europe, and here in America--it just means that I’ve helped, in some small way, to change this world.”
You’ll get no argument from people like Amy Daniels of Milwaukee.  Amy was diagnosed with an autoimmune disease called systemic scleroderma, an often fatal, always painful disease known as the disease that turns people into stone.  Thanks to Dr. Burt’s groundbreaking adult stem cell treatment, today Amy lives a normal, healthy life with her husband and two daughters.
Or Barry Goudy of Detroit, a man diagnosed with Multiple Sclerosis, an autoimmune disease that attacks the brain and spinal cord. Before his adult stem cell treatment, Barry could barely walk.  Today he is a healthy, active husband and father who coaches hockey and lives life to the fullest. 
Or Jill Rosen, a young woman from Chicago diagnosed with a disease called Systemic Lupus, which negatively impacts many different body systems, including joints, skin, kidneys, blood cells, heart, and lungs.  Jill became a patient of Dr. Burt’s, underwent adult stem cell therapy, and today lives a healthy, happy life, free of all symptoms of Lupus.
With dozens of published studies and numerous accolades from the news media to his credit, Dr. Burt might be tempted to rest on his laurels and enjoy the fruits of success.  But like every researcher, not everything is a success.  Sometimes the symptoms of a condition come back. There are—to put it bluntly—failures along the way.
“You definitely can learn as much from the failures as you do success,” explains Dr. Burt. “Although you never want failure, that’s a part of life.  It’s being able to recognize what’s happened, be honest with it and say, this part didn’t work.  And then ask, why not?  That’s what happens when you open a new door.  For me, that’s what life is about.  It’s opening new doors that in a way can make a small change in this world that helps people.  That’s what I want to continue doing.”
Like every scientific advance, it all starts with an idea.  For Dr. Richard Burt and his team of researchers at Northwestern University, those ideas and the use of adult stem cells are changing the world, one patient at a time.  Visit www.stemcell-immunotherapy.com for more information.
 Additional Links to News Reports concerning Dr. Burt's work:


The MS Ladies Go To Russia

Here's a nice TV news story about some women with MS who went to Moscow to be treated with HSCT.  It's light on details and I think the price they paid is understated by about 40 grand. But the point is they were brave enough to do it, it worked, and now they have some sort off odd sisterhood that I will never fully understand.

MS patients on shared journey celebrate shared victory in Dallas



http://www.wfaa.com/news/health/Women-on-shared-journey-celebrate-shared-victory-in-Dallas-262805591.html http://www.wfaa.com/news/health/Women-on-shared-journey-celebrate-shared-victory-in-Dallas-262805591.html

Monday, June 9, 2014

Harding's MS Loyalty

Josh Harding is a superstar goalie for the Minnesota Wild. In his mid 30's, he's young, smart and strong. And, as far as this hockey fan can tell, Harding is a great guy.

Harding has MS. In the 2013-14 season, the same year a Tysabri rebound MS relapse put me in a wheelchair, Harding started missing games, apparently due to his own MS relapse. He was absent from the 2014 playoffs.

Everyone is gunning for you when you're an NHL goalie, so it's no surprise that Harding has played things close to the vest in regard to his condition and his treatment. All he's revealed in public is that he's recently changed MS drugs, and that he sees the same MS neurologist I used to go to. He gives a brief, but glowing endorsement in the following video "Becoming Wild." Harding thinks very highly of his neurologist. For several years so did I, until glaring conflicts of interest with MS drug companies became impossible for me to ignore. It wasn't just me finding it curious that pharmaceutical reps seemed to get priority over patients in the waiting room. It's a national problem. As this article shows, pharma/doctor COI is how the business of healthcare works today. Patients desperate for the drugs tolerate it. Immense financial costs aside, I was crippled by how MS drugs were prescribed. It's hard for me to maintain a happy, bright attitude about any of it, except to thank God and Dr. Burt that I'm off MS drugs now and starting to recover.

Josh Harding is a bit earlier in his disease progression than I was. Right now he appears to be one of the most positive-minded and loyal people on the planet. Shortly after his MS diagnosis, he capitalized on his celebrity and enviable financial position as a pro athlete to start the non-profit charity, Harding's Hope. The organization raises funds to help treat people with MS.

Here is what I hope: That Josh Harding and his organization become aware that MS drugs aren't the only answer. That, when drugs fail, HSCT can keep MS patients like him out of a wheelchair. And it's not some far-off science fiction future;  it's happening now, based on legitimate science at some of the world's top universities. Moreover, HSCT is probably safer than many MS drugs. Harding won't find that information from his drug-prescribing anti-HSCT neurologist. But with a little research, including the links on this blog, he can find the facts. Drugs only slow the progression, but HSCT stops MS!

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

WildHBcommunity: Minnesota Wild's Loyalty to Josh Harding Leading to Tough Decisions Soon

Here in the State of Hockey Josh Harding has shown his loyalty to the Minnesota Wild by re-signing here multiple time as an unrestricted free agent despite having opportunities elsewhere. Harding stated when he signed his latest three year pact he wanted to fulfill his goal of becoming the starting goaltender for this organization. It appeared that Harding was on the verge of eclipsing the incumbent starter at the position Niklas Backstrom when he signed a 3 year deal on June 19th, 2012 but his diagnosis with multiple sclerosis has changed everything.

Harding on Becoming Wild





My heart goes out to Harding who is a classic case of an athlete and person that does everything within his power to avoid making excuses or drawing attention to how unfair life can be to someone working so hand to achieve their dreams. Harding is no stranger to have his career put on hold by injury but he has always persevered and found his way back to the lineup. Its very difficult to completely understand how much determination and effort Harding has put in to earn the opportunities he has been afford only to again be facing an uncertain future here with the Wild. 


Harding blew out his knee in an exhibition game causing him to miss the entire 2010-11 NHL season then returned to play in 34 games the following season as the backup to Niklas Backstrom. Harding had previously signed back to back one year deals with the club as an unrestricted free agent to attempt to prove his worth as an NHL goalie after the team drafted him 38th overall in 2002. Harding had always shown promise but a string of bad luck injuries had caused him to miss out on opportunities for steady playing time with the Wild. 

When the summer of 2012 came around several goaltender hungry teams were thought to have Harding at the top of their list as an unrestricted free agent. Harding could have punched his ticket to a couple different destination including the highly rumored Toronto Maple Leafs. Harding showed his heart and mind were with the Wild when he re-signed a very cap friendly 3 year pact to stay in Minnesota.

Harding only played in 5 regular season games during the 2012-13 season due to what was ultimately identified as symptoms associated with his diagnosis of MS. Harding didnt look like he would have much of a future in hockey after missing so much of the lockout shortened season but he re-emerged after Backstrom injured himself in warmups against their first round opponents the Chicago Blackhawks. Harding was strong for the Wild in the five games he played despite the series ending in 5 games.

Harding then won the starting goaltender position to begin the 2013-14 season going 18-7-3 with a save percentage of .933 and a goals against average of 1.66 before he again was forced from the lineup and team for the rest of the season due to what has been reported as complications to his management of his illness. Just heartbreaking considering how well Harding had played during the first two months of the season he was literally carrying this team to victories.

Harding's future with the Wild is a very difficult topic to completely understand given that he has chosen to be very guarded and private with the handling of his illness. Harding has proven that he has top tender talent and that he can be the #1 goalie for this team when healthy but 2 years in a row he has been forced to take extended absences from hockey which is very tough to not worry about being a deal breaker going forward.

Wild general manager Chuck Fletcher has mentioned that because of the health ramifications with both Harding and Backstrom, he doesn't have a clear picture of what the plan for the position group will be at current. Both Harding and Backstrom are under contract for this season and it doesn't appear either will be retiring this offseason. To make matters more complicated young backstop Darcy Kuemper who has flashed potential to be a very good NHL goalie is a restricted free agent this year and is going to be signed to a one way contract.



(Photo by Ezra Shaw/Getty Images)

Fletcher has to make a very tough decision very soon with regard to the future of Harding and I think it will have to come down to either he is the #1 goalie for this organization to begin the 2014-15 or his career is over here in Minnesota. The Wild can not afford to shuffle through players between the pipes like what occurred last season with Harding, Backstrom, Kuemper, John Curry, and Ilya Bryzgalov all making starts at different points of the year.

It could very well be the case that Harding is adamant about continuing his NHL career and is able to present the Wild with an action plan to keep himself in the lineup. I think we all root for Harding to overcome the odds but the harsh reality is at what cost to the team does Fletcher again roll the dice?

In Backstrom the team has a veteran netminder that has strung together a very successful career as the starter here and if he can return healthy he would be a perfect mentor for Kuemper. Harding could also serve as the backup to Kuemper or play in a time share as well next season but Fletcher has to be decisive about who stays and who goes this summer in my opinion rather than letting things linger into this fall.

Maybe Fletcher decides that trading Backstrom is the way to proceed and then it puts a ton of pressure on Harding to remain in the lineup and available should Kuemper not be up to the task as the full time NHL backstop. Not having a ton of information about whether Harding could have returned to action at the end of the season or in the playoffs makes it very difficult to understand the totality of the circumstances Fletcher is facing.

Harding certainly has earned every opportunity he has been afforded here in Minnesota, so turning out the lights on his NHL career is not something that I think anyone is looking to do right now. The handling of Harding by the organization has been very patient and classy to this point in my opinion but the time to be fair to each other should come to a head pretty soon here because this team can not afford to lose Harding for an extended stretch again and I don't believe he can guarantee to the team or even himself that his illness can be managed without absence over the 82 games NHL schedule and playoffs there after.

Harding could be bought out of his contract or he could be placed on the injured reserve as options should he not be in the teams plans for next season. The latest word has them expecting that he reports to training camp but I am not sure how much of that is truth or posturing. Fletcher will have to show his hand eventually and that could come as soon as the June 27th-28th NHL draft. Stay Tuned!

Thursday, June 5, 2014

Where to get HSCT

I was treated by Dr. Richard Burt at the Northwestern Division of  Immunotherapy and Autoimmune Diseases (DIAD). Background on the program http://www.stemcell-immunotherapy.com

The Phase 3 study is detailed at http://www.clinicaltrials.gov/ct2/show/NCT00273364?term=Stem+Cell+Therapy+for+Patients+With+Multiple+Sclerosis+Failing+Alternate+Approved+Therapy&rank=1
Read the acceptance criteria carefully to see if you might qualify. Then apply to:
Contact: Dzemila Spahovic, MD312-695-4960d-spahovic@northwestern.edu

According to Dr. Burt, the ideal candidate for this treatment is an MS patient who is still in the relapsing-remitting stage of the disease, experiencing relapses, failing conventional MS drug therapies and showing enhancing lesions on an MRI scan.  I fit all those criteria and was accepted in Chicago.  Research studies may or may not be currently recruiting patients. They can close at any time. It's best to call or email directly to the  program to determine their current research needs and to explain your current condition.

Other programs around the world also offer HSCT for  MS. Each has their own unique criteria of patient acceptance and cost. Some will treat patients without participation in a research study. Thanks to HSCT advocate Gina Metichecchia Tiel for compiling the following resource list.

To learn more about this treatment, go to THEMSCURE.BLOGSPOT.COM or request an invitation to join two Facebook Forums dedicated to HSCT treatment:
Hematopioetic Stem Cell Transplant – MS & Autoimmune Diseases
 Dr. Richard K. Burt Stem Cell Study (HSCT) Chicago
Worldwide facilities performing HSCT for MS and other Autoimmune Disorders:
USA – DIAD: Division of Immunotherapy and Autoimmune Diseases 
CANADA – Ottawa General Hospital 
DENMARK – Rigshospitalet  
GERMANY – UniversitätsKlinikum Heidelberg 
INDIA – Manipal International Patient Care Center 
ISRAEL – CTCI: International Center for Cell Therapy and Cancer Immunotherapy
ITALY – Careggi University Hospital of Florence
RUSSIA – National Pirogov Medical Surgical Center 
SOUTH AFRICA – UCT Private Academic Hospital 
SWEDEN – Stockholm Care AB 











Wednesday, June 4, 2014

Questions about my treatment

Some readers have asked if my current state of partial disability is from the HSCT treatment or from  the MS. It occurred to me that others wondering if they should do HSCT to stop their MS might have the same question, so I'm reposting here.

Since I've done nothing but improve since HSCT, I can say with reasonable certainty that my remaining disability is from the MS, not the HSCT. I expect to continue getting better, but wish I'd done HSCT sooner so my recovery could be shorter. Getting accepted and scheduled for HSCT treatment took more time than I expected. I thought I had more time, but then the Tysabri rebound attack hit me, increasing the urgency of the situation. Below is a rough timeline of my MS setbacks and treatments before HSCT. It's been a long seven years.

2007
Diagnosis due to leg and vision issues.
2007-2010 Treatment: Steroids and Betaseron injections. Betaseron made me moody and depressed.

Relapse with excruciating burning sensation in hands.
2010-2012 Treatment: Stopped Betaseron. Started Steroids and Tysabri infusions. Hand burning didn't go away.

Decline in mobility (footdrop, ataxia, heat intolerance) and positive test for JC virus.
2012 Treatment: Stopped Tysabri in September 2012 due to PML brain infection risk. Neurologist planned to transition me to BG12/Tecfidera, which was supposed to be FDA-approved.

January 2013: BG12 FDA approval delayed. Neurologist increased dosage of IV steroids due to concern of Tysabri rebound. My insurance company rejected neurologist's request for IVIG treatments, which may or may not have prevented the Tysabri rebound that was to come.

May 2013: I began corresponding with Dr. Burt's HSCT study administrator. I sent him my medical records.

June 2013: BG12 finally approved, but too late. MRI showed a massive MS rebound attack on my brainstem and brain motor strip. My legs locked up. I got double vision and became incontinent. I began taking BG12 anyway. Experienced the typical BG12 side effects of intestinal distress and hot flashes.

June 2013- December 2013: More IV steroids.  Chest catheter installed. I did regular plasma exchanges  (PLEX) to remove some of the attacking antibodies. This provided some relief, allowing me to walk with a nursing home walker. But my condition degraded whenever I stopped PLEX.

September 2013: Met with Dr. Burt in Chicago. He agreed to treat me with HSCT. I would soon part ways with my old neurologist.

December 2013: Bone marrow stem cell harvest in Chicago. I stopped BG12 and plasma exchanges. Neopogen injections used for stem cell harvest aggravated my MS spasticity, but the small dose of Cytoxan chemo eventually damped down my immune system enough to provide some MS symptom relief.

January 2014: Received five doses of chemotherapy to wipe out my immune system. My stem cells were transplanted back to reset it.

June 2014: I'm slowly, very slowly, getting better. Dr. Burt says recovery and nerve healing may continue for another two or three years. My only remaining MS issue is that walking is very difficult and usually requires a cane. My wheelchair goes unused. I take no more drugs of any kind for MS.

Friday, May 23, 2014

My Lost Year(s)

One year ago, I had a massive MS Tysabri rebound attack that locked up my legs and put me in a wheelchair. By coincidence, the anniversary of my infirmity coincides with World MS Day on May 28th. It's an opportunity to increase awareness about a puzzling and often devastating disease. The website includes perspectives from people with MS who are not necessarily white middle-aged women, or even white middle-aged men, like me. Contrary to what doctors used to tell us, MS does not discriminate in regard to the ethnicity or sex of the lives it steals.

As I view the faces and the hopes of people scroll by on the MS World Day website, I realize MS steals life one year at a time. My life of adventure was put on indefinite hold. None of us can get lost time back. But if we're lucky, we might have an opportunity for more in the future. That second chance is what HSCT gave me.

Four months ago, I stumbled out of Northwestern Hospital Chicago with a new immune system that wasn't attacking my nerves anymore. My head was bald from chemo and my body probably the physically weakest it's been since infancy. But I was happy. Thanks to Dr. Burt's HSCT procedure,  I'd just dodged a life of wheelchair-bound incontinence.  Now I'm slowly getting better, but recovery has still been maddeningly slow. Walking a block or two takes tremendous effort. People look at me and know something is wrong. I just look at them, smile and say "Hey, I was in a wheelchair four months ago!"

Dr. Burt reminds me to be a patient patient. Though the last year was certainly the worst of the MS, my nerve damage has been accumulating since before 2007 when I was diagnosed at the age of 41.  It's typical for improvement to continue for 3 or 4 years after HSCT.  I'm looking forward to the improvement, but sometimes this feels like running the world's slowest marathon.  Actually, not running. More like stumbling a few hundred feet, taking a a nap, and getting back up again.

Addendum: An astute reader of the MS World Day website will note sponsorships by MS drug companies, including Biogen Idec, the maker of Tysabri. Please forgive me if I have mixed feelings about the rhetoric of hope from drug companies. Over time, it felt like my drug-prescribing neurologist was dangling hope at the back of a trap.

When Tysasbri threatened to kill me with a deadly brain infection in the fall of 2012, Biogen offered to transition me to a free year of their then not-yet-FDA-approved oral MS drug, BG12.  As noted earlier in this blog, delays in approval of BG12 set me up for an MS Tysabri rebound that put me in a wheelchair and itself almost killed me with attacks on my brainstem. When BG12 was finally approved to be marketed as Tecfidera, I took it hoping it would help, but it didn't.  I stopped taking Tecfidera in December 2013 when I began HSCT treatment.

Five months later, Biogen finally noticed I wasn't taking their drug anymore. They called to see if I needed assistance.  No thanks, Biogen, I don't need MS drugs anymore. If anything good came out of my year of Tysasbri rebound hell, finding HSCT and getting off MS drugs would be it.