So Long, 2016…

(For those who receive this via email, this post contains a video, which can be viewed on the Wheelchair Kamikaze website – click here)

Just a few things to wrap up it up as we bid adieu to 2016, a year that has seen much tumult and turmoil for so many. My Spidey senses are telling me that 2017 may make 2016 look like a powder puff, but then again, three decades ago my Spidey senses told me that I would be the next Mick Jagger, so what the hell do they know? Stupid Spidey senses.

On a much more upbeat note, on Tuesday, December 27, 2016, Wheelchair Kamikaze received its 2.5 millionth page view, according to statistics provided by Google. All I can say to that little factoid is – mind blown. When I first started the blog I never expected more than a couple of dozen people to look at the thing, and even though I strongly suspect that at least 2.45 million of those page views are directly attributable to my mother, I’m still gobsmacked.

Wheelchair Kamikaze hit 1 million page views back in January 2014, about 5 years after I started the blog. Now, we’ve added another 1.5 million page views in only 3 years. Again – mind blown. All I can say is thank you thank you thank you thank you thank you thank you thank you thank you thank you thank you 2.5 million times to everybody who has ever laid eyes on these pages. Though my stupid Spidey senses never saw the unfortunate circumstances that led to Wheelchair Kamikaze coming down the pike, I am eternally grateful to everyone who has animated these pages with their comments, input, and presence. 

We are all in this together, folks, and the only way out is through. You’ve all helped me stumble my way through the body and mind twisting experience of multiple sclerosis, and if I’ve been able to help some of you shoulder the burden even just a little bit then at least there has been some method to the madness. Okay, all together now – MS SUCKS!

For those who might want to read a bit more about yours truly and the back story of the blog, Healthline.com has published a very nice article about WK in conjunction with the blog taking 2^nd place in the website’s Best Health Blog contest (click here). I’d like to profusely thank the writer who penned the article, Elea Carey. She somehow managed to wrangle the veritable deluge of self-indulgent verbosity I sent her way in response to some simple interview questions into a succinct and elegant piece of writing. Maybe I should hire her as the full-time editor of this blog. Lord knows I need one. Stop me before I compound sentence again.

Okay, enough about me, I’ll end this last blog post of the year with an actual MS related item. The much anticipated FDA review of Ocrelizumab, the first drug that has a chance to be approved for the treatment of PPMS (along with an almost guaranteed approval for RRMS), has been delayed. Although the drug was initially slated for FDA review on December 28, that date has now been pushed back to March 28, 2017, due to “manufacturing issues” (click here). I’ve previously written fairly extensively on Ocrelizumab and its late stage trials (click here), and I’ll certainly have more to contribute in the coming weeks. 

Although the medical press is practically hyperventilating about the first drug that stands a very good chance at being approved for use in people with PPMS, there are some valid reasons for concern regarding this product. I’m hoping to interview a representative from Genentech, the manufacturer of Ocrelizumab, which, if it happens, should be pretty interesting. I’m also working on getting some interviews with other prominent figures in the MS world, so stay tuned…

All righty then, here’s to a happy new year to all, and may 2017 bring each of us much more good than bad. I’ll leave you with the following tune from a band I’ve loved ever since I first saw them as a high school sophomore in the late 1970s. To hell with my tingling Spidey senses, how about some unabashed optimism to ring in a brand-new year…

Happy Holidays, and Results from Our Donation Poll

 

Ho ho ho, Merry Christmas, Happy Hanukkah, Good Festivus, and Happy Kwanzaa. And for anybody not covered by the previous salutations, I wish you a joyous winter solstice.

Okay, folks, the votes are in for our holiday donation contest, and it looks like the Tisch MS Research Center of New York has won in a landslide victory. The Tisch Center garnered 63% of the votes in our poll to determine which MS nonprofit should get the $500 donation derived from the prize money Wheelchair Kamikaze won in Healthline.com's "Best Health Blogs" contest.

Ultimately, over 210 people voted in our contest, with about 130 of them voting for the Tisch Center, so a resounding victory all around. This takes nothing away from the other nonprofits I offered up for votes: The Accelerated Cure Project, The Buffalo Neuroimaging Analysis Center, and The Multiple Sclerosis Association of America. All of these organizations are doing great things for the MS community and are certainly deserving of your own holiday gifts if you are so inclined. You can read more about all of them by (clicking here).

Oddly, the blog post soliciting votes for these groups was viewed almost 1200 times in the past week but only slightly more than 200 people voted in the poll. Not sure why somebody would read the post and not vote, but c'est la vie. Maybe it had something to do with Russian hacking or some other nefarious goings-on. Sad.

I will be making the donation to the to the Tisch Center as soon as I receive payment from Healthline.com, which is on its way. This past week I visited with Dr. Sadiq, the lead researcher of the Tisch MS Research Center, and he was extremely excited about the prospects for The Center's upcoming Phase 2 regenerative stem cell trial for MS patients, the first such trial to receive FDA approval. In preparation for the upcoming trial, The Center is about to start construction of the world's largest MS stem cell laboratory in the world, and is also about to publish the results of the first phase of the trial. The Phase 2 trial is currently scheduled to start in June, 2017. In addition to stem cell research, The Tisch Center is also delving into many other aspects of the MS mystery, and Dr. Sadiq had some very encouraging things to say about the whole of the Tisch Center's research efforts. He feels that his researchers are closer than ever before to unraveling some of the core mysteries of Multiple Sclerosis.

Not sure if I'll get a chance to put a post up next week, so let me take this opportunity to wish everybody a happy and healthy 2017. Here's hoping that the new year brings only good things to each and every one of us!

Thanks for reading Wheelchair Kamikaze, and for breathing life into this blog. My appreciation for all who visit these pages is beyond words…

Here's some Christmas cheer from The Godfather of Soul…

WK Takes 2nd Place in "Best Health Blogs" Contest!

Hey folks, thanks to your votes Wheelchair Kamikaze took 2^nd place in Healthline.com’s “Best Health Blogs” contest! This is really a terrific honor, particularly because of the fierce competition – 382 other blogs were nominated to participate in the contest. Big congratulations to the two 1^st place winners who apparently tied in the voting, “Lizzie’s Lungs” (click here) and “ALS and Wellness” (click here), as well as 3^rd place winner “Early Onset Alzheimer’s” (click here). And of course, a huge thank you to Healthline.com (click here) for running the contest. Although Wheelchair Kamikaze has been honored as among the top MS blogs in the past, I believe this is the first time it’s been recognized as one of the best health blogs in general. BTW, Healthline's graphic department came up with the above image. I'm not THAT much of an egomaniac…

Healthline has generously awarded Wheelchair Kamikaze $500 for its second-place finish. I’d like to donate this prize money to a worthy MS nonprofit, and I’d like Wheelchair Kamikaze readers to pick which organization should get the big bucks. We’ll do this via an online vote, much the way Healthline’s contest winners were chosen. I’ve taken the liberty to nominate four worthy organizations from which to choose. Here’s some brief background on the chosen organizations to help inform your vote. I’ve arranged the candidates in alphabetical order.

• The Accelerated Cure Project (click here) – The ACP is the organization administering the iConquerMS project (click here), a patient-centric research project in which MS patients can take a personal stake in advancing the cause of MS research by completing a series of online questionnaires, suggesting research topics of importance to them, and providing their feedback on research studies. By “crowdsourcing” a massive amount of data supplied by MS patients themselves, iConquerMS is compiling an unprecedented database on all aspects of MS that is open to researchers worldwide. This huge pool of information should reveal trends and insights into and about the disease that otherwise would have been missed by looking at smaller pools of data. I strongly encourage all readers to visit the iConquerMS website to sign up and begin participating in this tremendously important project. Your information has power, and together we can conquer MS. (Full disclosure: I am a member of the iConquerMS engagement committee).
• The Buffalo Neuroimaging Analysis Center (click here) – BNAC is a research organization devoted to shedding light on the mysteries of multiple sclerosis and other neurologic diseases through the use of innovative imaging techniques and advanced analytic tools. The group did some of the first rigorous scientific research on CCSVI when Dr. Zamboni’s vascular theory of MS first made headlines, producing findings that cast some doubt on the causative role of venous abnormalities in MS. Their research has expanded to include the role that vascular abnormalities might play in exacerbating a wide range of neurological disorders. Lead researcher Dr. Robert Zavidanov directs a team of medical researchers and scientists of a variety of disciplines, who, among many other projects, have probed the role that gray matter lesions and inflammation of the tissues that surround the central nervous system play in the MS disease process. BNAC has pioneered many revolutionary imaging techniques. Their work promises to change in a fundamental way our understanding of Multiple Sclerosis. (Full disclosure: I’m on the patient advisory board of BNAC).
• The Multiple Sclerosis Association of America (click here) – The MSAA provides vital services and support to MS patients throughout the United States. Programs include a Helpline with trained specialists; award-winning educational videos and publications, including MSAA’s magazine, The Motivator; safety and mobility equipment distribution; cooling accessories for heat-sensitive individuals; educational programs held across the country; and Lending Library among other services. For MS patients in financial need, the Association provides assistive equipment and cooling garments free of charge, as well as financial assistance for those who cannot afford to get MRIs. The scope of services and information provided by the Multiple Sclerosis Association of America is truly astounding, and even includes a smart phone app that helps patients manage their MS. Their website is a terrific resource for information on all things MS. I encourage all Wheelchair Kamikaze readers to visit the MSAA website and poke around, it’s a veritable treasure trove of information and vital services.
• The Tisch MS Research Center of New York (click here) – The Tisch Center is a worldwide leader in cutting-edge multiple sclerosis research, and is currently in preparations to begin the first FDA approved Phase 2 regenerative stem cell trial in MS patients ever conducted, expected to get started this June. The Center is building the largest stem cell research laboratory in the world, and its staff of world-class researchers has developed proprietary methodologies that transform raw mesenchymal stem cells into cells specific to the central nervous system, which should prove to be much more capable of repairing the damage done by MS than the raw cells themselves. Under the guidance of Dr. Saud Sadiq, the Tisch center is involved in a wide variety of transformative MS research projects, from identifying new disease biomarkers to understanding the mechanisms behind disease progression. The Tisch MS Research Center is totally devoted to finding the cure for Multiple Sclerosis, which is of course the ultimate desire of every MS patient and all those who love them. (Full disclosure: Dr. Sadiq is my personal neurologist).

Please take a thorough look at all of the above candidates, and vote for whichever organization you would like to see receive the $500 awarded to Wheelchair Kamikaze by Healthline.com. The poll is located at the top of the left-hand column of this page. I’ll leave the poll open for 7 days, so the results can be determined just before Christmas. Of course, all of these organizations are great candidates for your own charitable giving, should you be so inclined. Ho Ho Ho…

Once again, thanks so much to everyone who voted for Wheelchair Kamikaze in the best health blog contest…

Shingled Out – Updated

(A quick thank you to all who have voted for Wheelchair Kamikaze in Healthline.com's "Best Healthcare Blog" contest. Voting continues until December 12, (click here) to cast your vote…)

Note – this is an updated version of this post, which was originally published earlier today. This update includes further information on the shingles vaccine, added at the end of the essay, due to some concerns raised by readers over the safety of the vaccine when used in MS patients. Just wanted to ensure that these issues were addressed. 

Well, it looks like the holidays have come early to my house, and rather than Santa bringing me that 1956 Porsche I've always wanted, I instead got the shingles. Yay. Guess I was on St. Nick's "naughty" list…

About two weeks ago I started feeling vaguely unwell, suffering from the kind of symptoms one typically gets before the onset of the flu. Just generally achy, no appetite, and a tremendous amount of fatigue, even for an MS patient. A few days later I was assaulted by the worst headaches I've ever experienced, jolting bolts of excruciating pain that felt as if somebody was trying to impale my skull with a red-hot stiletto behind my right ear. The pain, which exploded from the bottom of my skull forward to the area above my right eyeball, came in waves about every minute or so, and was breathtakingly debilitating. I have a lot of experience with pain due to a degenerative bone condition called Avascular Necrosis, but the searing, twisted agony I was suddenly stricken with was beyond anything I'd ever felt or even imagined.

As I sat cradling my head in my hands, trying desperately to keep my skull from blowing apart, my wife quickly googled the symptoms I was experiencing. She came up with a condition called occipital neuralgia, which can develop in MS patients. The ailment involves inflammation or damage to one of the occipital nerves, which run from the base of the skull up through the scalp, and its symptoms seemed to precisely match what I was feeling. As this was all occurring on a Saturday night, there was little I could do but suffer through it. I was absolutely not going to go to a hospital emergency room, as I long ago resolved that before I would put myself through the existential, soul crushing misery of sitting in a New York City emergency room on a Saturday night I'd have to be suffering from something no less serious than a severed limb. Much better to lay moaning in bed waiting for my skull to combust.

The next morning I called my neurologist and told him what was going on, and he agreed that my symptoms sounded like occipital neuralgia. He phoned in a prescription for gabapentin, a drug also known as Neurontin, which is used treat nerve pain. The Neurontin did indeed reduce my pain level substantially, but also made me feel completely loopy and dumb as a box of nails. Still, not a bad trade-off, all things considered. Better stupid with a dull headache than smart with a skull trying to contain a thermonuclear blast.

Later that day I noticed a slight rash on my right forehead, an area in which I sometimes get a bit of psoriasis. For reasons that doctors really can't explain, many patients with nervous system diseases also get skin conditions like psoriasis or eczema. Ask a doctor about this strange correlation and they'll likely answer you with a string of polysyllabic mumbo-jumbo, because most physicians would sooner poke their own eyes out than utter the words "I don't know", but the truth is this connection has long been observed but is little understood. In any event, the skin on the right side of my forehead became more inflamed as the day went on, and started getting very tender as well. By that night I noticed little blisters appearing in the rash, and I started thinking "shingles".

The next day, Monday, I called my neuro's office and told them I suspected I had a case of shingles, and they told me to come right in. After a brief examination, the neurologist I saw confirmed that I probably had shingles, but advised me to see a dermatologist ASAP to nail down the diagnosis. I saw a dermatologist the following morning, and she concurred that I did indeed have shingles. I told her that I would rather have a spiral staircase, and she just stared at me blankly. I hate doctors with no sense of humor. She did say that the severe headaches I had experienced were typical for people developing shingles on their forehead and scalp, so that at least explained the pain I was feeling.

Shingles is a condition caused by the varicella zoster virus, also known as the herpes zoster virus. This is the virus that causes chickenpox, which was very common among children of my generation, back before most kids were given the chickenpox vaccine. I had chickenpox when I was six years old. The varicella zoster virus is a human herpes virus (click here), a family of viruses that also includes Epstein-Barr virus and the viruses that cause oral and genital herpes. In total, there are eight known human herpes viruses, which all share a common trait: once a person is infected with them, they are infected for life.

In the case of the varicella zoster virus, after causing chickenpox the virus goes into deep hibernation, taking refuge in the root cells of nerves. Later in life, usually when a person is older than 50, the virus can suddenly wake up and migrate down the path of the nerve to the skin, where it causes the painful rash that is the hallmark of shingles. There is now a shingles vaccine that can greatly decrease the chance of a person infected with herpes zoster to develop shingles, but I never asked for the shot. I'd seen countless commercials for the vaccine, and had thought to myself, "self, you should probably get that vaccine", but as I am generally nauseated by prescription drug advertising I refused to be swayed by the pharmaceutical companies' slick efforts to hawk their product. Stupid me.

While I did know that shingles involve a painful rash, I didn't know that the condition also commonly makes patients feel like absolute crap for weeks on end. Those initial flulike symptoms I was experiencing in the days before I developed the searing headaches and then the rash have blossomed into full-fledged misery, leaving me feeling like I just tried to kiss the "A" train between stops. I still have a dull headache, my muscles hurt, I feel feverish (even though I have no fever), and I'm so fatigued that I could easily sleep 20 hours a day. I'll be on antivirals for the next 30 days, which supposedly will shorten the duration of these symptoms. The blistering rash on my forehead is starting to crust over (yum), which is the first sign of healing. And, of course, as with any bug that strikes an MS patient, all of this has only made my neurologic symptoms much worse. My compromised extremities are less functional than ever, a frightening preview of what my continuing progression has in store.

I've been told to avoid contact with people until at least the end of this week, since there is a chance I could pass the virus on to folks who either never had chickenpox or were never vaccinated against them. The weird thing is that if I did pass the virus on to someone they would develop chickenpox, not shingles, since the first stage of varicella zoster infection is always chickenpox, no matter when you contract it. Avoiding people shouldn't be much for problem, as I can barely make it from my bedroom to the living room in my wheelchair. And who wants to see people anyway, when you've got a disgusting crusty rash on your forehead. Children would run screaming…

Please, take my advice – if you had chickenpox as a child, go get the shingles vaccine. I wouldn't wish what I'm currently going through on a dog. Actually, I wouldn't wish anything bad on a dog. I like dogs. Dogs are better people than most people.

Woof.

Addendum: numerous readers have sent notes advising me that because the shingles vaccine contains live virus they've been told it's a no-no for MS patients. Others, though, have reported getting the vaccine with no problems.

Here's more info on the shingles vaccine and MS, from the National Multiple Sclerosis Society Website:

"Zostavax is a live-virus vaccine to prevent shingles. MS neurologists do not recommend live-virus vaccines for people with MS because these vaccines can lead to an increase in disease activity. However, Zostavax is an exception because most people have had chicken pox earlier in their lives and therefore already have the virus in their bodies. Each person needs to discuss the potential benefits and risks of this vaccine with her or his healthcare provider."

For further info, a very comprehensive article about the shingles vaccine and its use in MS patients can be found at the Multiple Sclerosis Association of America's website (click here).

Bottom line, there seems to be some conflicting information out there regarding the safety of MS patients getting the shingles vaccine. This appears to be due to the complex nature of Multiple Sclerosis and the drugs used to treat it. Each patient is different, and no one-size-fits-all approach will cover all bases. Given my horrible experience with shingles, I'd say it's definitely worth a conversation with your neurologist to discuss whether or not you're a candidate for the shot.

(Warning, shameless self promotion ahead: Wheelchair Kamikaze has been nominated for Healthline.com's "Best Healthcare Blog" contest. If you feel WK deserves such an honor, please cast your vote on the contest webpage (click here). Just scroll down at the contest webpage until you see the blog name, Wheelchair Kamikaze is currently in fourth place).