State of Mind

It strikes me that little is blossoming with MS research these days. Big Pharma has put its self-serving horn down. At least for the moment.   The last headlines, which I never trust, trumpeted FDA APPROVAL OF Ocrevus (ocrelizumab). Rituxin has been around for years. The drug never did anything for me. Of course I have SPMS. Ocrevus is said to treat RRMS and PPMS. Does that make sense?

I am deteriorating. Every thing I attempt to do has gotten worse. My right side has taken a leave of absence or just quit. I cannot coax it back. I am on a course of Solu-Medrol, the Prednisone based all-purpose, one size fits all drug that is good for short term relief. I asked for it knowing It is but a brief reprieve. That makes me wonder about Ocrevus.

I called a young friend with PPMS. He is doing great. Are you on the new drug? “No, he said. I’m already on Rituxin and I think it is helping. Ocrevus is a more expensive version, and I thought, why do it?”   Our neurologist just scoffed. Genentech is just asadept as Biogen whewn it comes to getting the drumbeat going. My friend attributes his stable health to diet, sleep and clean living. He has quit drinking and eating junk food. I think that is called seizing control.

This guy has his act together. It is the challenge for me and probably many.  Don’t ever underestimate the power of attitude when coping with serious sickness. We cannot determine the course of the disease. But sometimes we can steer it, at least until we lose control of the car. Maybe that will be way down the road. I pay more attention to my state of mind than ever. That is one key to our physical fortunes. I am down but not out.

 

 

 

 

44 Responses to State of Mind

  1. Jane August 4, 2017 at 9:18 am #

    Again, Richard, well stated.

  2. Barb O. August 4, 2017 at 1:11 pm #

    I agree Jane well stated & again Richard I admire your courage! Having had MS for 37 yrs. you may as well say my husband also named Richard has had it that long taking care of me. Here’s the latest setback…..he had inguinal hernia surgery 8 days ago I am in a wheelchair so am using a slide board to get from point a to point b. Have read that hernias can start from birth & may take a lifetime to develope. Am not buying much of that but feeling he has spent too much time lifting me or helping me as he says. I go back & forth feeling guilty about the fact that I’m killing him & that it’s just too much for him. The surgery is a wake up call he’s 71 & im 66 not that many more shopping days left for us! Or as Winston Churchill said “If you’re going through hell keep going”. Am going to keep going like you. You are an inspiration to all of us.

  3. Jan August 4, 2017 at 5:23 pm #

    Yes Richard, SPMS, Solu-Medrol–understand those firsthand

    I also sometimes think about that when we moved seven years ago, health was not outwardly evident, but now it is a far different story. Regardless of what anyone–usu. doctors–may say, I think progression could be from doing wheelies, so to speak, over these more recent years with a boatload of stress.

    Just this morning, I had a conversation with a friend who had dealt with breast cancer years ago–we both agreed that stress–emotional stress–is huge. And what has saved me is a positive attitude.

    So I definitely think that attitude matters. Healthy eating has helped, but so has an occasional food detour and not surrounding my entire being around being hyper about food or even MS. Definite MS health progression, but more strength emotionally that offsets at all.

  4. Jan August 4, 2017 at 6:10 pm #

    So, I think it comes down to this for me: to control what I can with my health–may or may not be effective, but I try as inspired to do so. But nearly always, how I respond IS under my control.

  5. Christopher August 5, 2017 at 6:54 am #

    Richard, and everyone else here, I understand your feelings well. This is not a news trumpet, but there may be some hope yet for people with progressive MS in the degeneration phase. I know Biogen is big pharma, but they have a promising drug in the repair/restore category that is what is known as an anti-LINGO-1 drug (opicinumab). The really important research is the phase 3 trial, which should start next year or 2019.

    The results so far haven’t been spectacular (no blockbuster),and I know it’s a long way off which is hard to take. But it’s something, and right now there really isn’t anything for us other than the so-so drugs we have now. Wish I could generate more hope, but the gears of science move slow. Maybe the AI technology of IBM’s Watson can soon add some much needed horsepower to speeding up the search–it’s already being done with cancer research.

  6. Dale August 6, 2017 at 1:19 am #

    Someone led me to the Facebook page MSGym. This fellow Trevor and his wife Misty are focused on exercise over medication. His exercises cover a range of abilities, and there are downloadable files in addition to his live videos. But his upbeat way and positive attitude are contagious. I’m doing his suggestions for dropfoot right now and they really seem to be helping. Again though it is his attitude and encouragement that seem to be helping so many. His following is growing but he tries to respond to all comments during his live workout. Rather remarkable.

  7. Jan August 6, 2017 at 11:47 am #

    Yes: I myself trust that more than “Big Pharma.” Thanks for your info, Dale. Will look into that, especially with no MS meds in 12 years of this beast.

    For me, it is attitude, positivity, perseverance, faith in Christ (and I am not saying that it is easy or fully understandable, but it does offer insight, inspiration, and focus for me). I may get a ticket now and then–often lately–so-to-speak, but I do feel that I am steering my car in the right direction amidst challenges of MS and a fractured wrist.

  8. Christopher August 6, 2017 at 7:14 pm #

    I would like to add some information from my education, research and personal experience with progressive MS, or just multiple sclerosis in general. I completely understand people like the folks you are describing who advocated for holistic activities like exercise over taking medical drugs and therapies,. This also includes people like Terry Wahls and her specialized diet for MS. But the problem is that most of these people don’t understand the science of nerve degeneration or don’t understand it very well or just have no intention of researching science fully. That knowledge is very important, actually critical in forming a good plan for your MS treatment.

    First of all there are two phases in the process of multiple sclerosis:. First is the inflammatory phase,. and this is the part that’s usually characterized by active inflammatory disease process that’s named RRMS (relapsing-remitting MS). Second is the degenerative phase characterized by progressive degeneration in the nervous system that’s named SPMS or RRMS or PPMS (secondary progressive, relapsing progressive, and primary progressive MS). Not everyone has one and then the other in a linear fashion. We we all have different paths and different experiences with disease course, just like all of our fingerprints are different from person to person even though they are all characterized as fingerprints. I am going to go out on a limb here because it’s important for me to get this information across, so I may come off as sounding like a jerk but I’m really not I just care a lot. First off any of these alternative Therapies for multiple sclerosis that don’t include disease-modifying Therapies-_which are basically the drugs–do not have any foundation in strict scientific clinical research and are mostly anecdotal. That isn’t to say they don’t have some Merit, but they aren’t proven to do what they are professing to be able to do which usually turns out to sound more like a miracle than anything else. I hate taking pills and I hate needles as much as the next person but they are extremely important in the management of this horrible disease. Unfortunately any of these diets and exercises and other Ventures into the realm of questionable science if they do work have a very very small window of opportunity that needs to be started in the very beginning, which many times multiple sclerosis is already well on its way when it’s finally diagnosed. The thing is the whole idea to be able to arrest this disease and stop it in its tracks is the golden prize. Because the idea is to stop the disease process from going forward and hold it in its place or keep it from progressing faster, rather than trying to go backwards in time and fix damage which at some point is nearly impossible. At that point when the disease is already well on its way of doing it’s damage most of these alternative Therapies have little to no effect, and it’s impossible to tell whether they will be helpful or not because you can’t crack somebody’s brain or spine open to look at the nerves. I can’t tell anyone what to do for their own personal Journey with MS… I so wish I had access to that type of information because it would make so many people’s lives so much better. But I can tell you with my own experience, and college education, and research that it’s extremely foolish to forgo the disease-modifying drugs for some therapy that professes to be more natural and less harmful. These drugs have been tested over and over again for years, with the exception of some of the newer drugs wish Heaven had the benefit of years of observation in large populations of people affected with MS. They do work and they need to be started as soon as possible, used consistently to the letter of the instructions, and never stopped until it’s time to try something else or your doctors agree that the disease process has been arrested and there is no urgent need which is very rare. I’m not saying that some of these alternative therapies don’t work… They probably do. But it’s impossible to tell which people they will benefit greatly and which people they won’t help at all. But the drugs on the other hand do work and sometimes it just takes a little tweaking to find the right one, and I’m not talking years and years. But if you start with one of those other therapies of just exercise or fancy diets,. The problem is that the damage could be going on behind the scenes and you don’t know it,. MS is very sneaky and diabolical. But like I said I’m not telling anybody what to do and I’m not trying to influence anyone one way or another I’m just trying to give the best information I have available to me, and it’s also the same information disseminated buy some of the best Minds in science devoted to the treatment of multiple sclerosis.

    I am always here to talk with anyone about anything they would like to know or more information that they would need. It’s a very big part of my

  9. Christopher August 6, 2017 at 7:15 pm #

    … ardent advocacy.

  10. Jan August 6, 2017 at 7:44 pm #

    Christopher, I do know that you are well-meaning, and much of what you say may have merit–but frankly I know people who have been on the medicines and are doing relatively well, and people who gave up on them after not doing so well.

    I also was not happy 12 years ago after seeing an Avonex drug kit with major, clever marketing literature showing an iceberg with copy saying that you may be feeling fine, but this is what’s going on underneath. Maybe. That diagnosing doctor who recommended Avonex asap was also antsy about my getting a second opinion three months away from the Mayo Clinic. MS, while potentially very nasty, was not like having a heart attack needing immediate care. A different take on that would be a research article entitled, “MS wait and see.”

    I think the fact remains that nobody really knows, and everyone just tries the best they can. Any approach seems somewhat like a crapshoot. We all have choices that we have to live with–in hindsight. would we do something differently? Possibly, but hindsight is 2020. As with life in general, we all make the best decisions we can at the time and try to live with the consequences, whatever they may be.

  11. Jan August 6, 2017 at 8:12 pm #

    Here is that article: https://goo.gl/CjZcER To my knowledge, Mayo definitely does advocate MS meds, if warranted.

    The kicker in that article is that 5, 10 years seems like ages, and people currently can’t go back to a prior state. And what factors post-diagnosis enter in… Stress? Life? Natural progression? Nothing but MS itself and one’s own unique body and circumstances? No one really knows for certain.

    There are things in life beyond what I myself can know for certain here. It’s up to me individually where to place my trust. Some consequences may be evident here. One big one with far greater impact will not be made apparent to me in this life.

    • Christopher August 7, 2017 at 4:31 pm #

      Jan,

      You’re absolutely right that very little is known so far, and that we all have to make our own decisions based on the best knowledge that we can gather and knowing ourselves well. The point that I was trying to make is that with MS we have to make a decision on something fairly quickly after diagnosis and stick to that therapy whatever it is religiously and without stopping from that point forward. Doing absolutely nothing and just waiting to see what happens is inviting disaster. Now whether the choice is to use one of the disease-modifying drugs or one of the alternative Therapies is up to each of us, but there needs to be a choice made in the very beginning and it needs to be made rather quickly to Stave off further progression of the disease process. There are about 14 different disease modifying drugs, and some like Copaxone a very little if no effect on our actual immune system but act as countermeasures for the immune system to attack the drug instead of our nervous system. So it’s fairly benign compared to some of the other drugs which actually directly change our immune system intrinsically,. There really isn’t any perfect choices right now, and there isn’t any big Pharma conspiracies two weather holding back actual cures for Ms so that they can make money off of ineffective drugs. Those are just very bad rumors based on bad information and people who are frustrated and scared. Yeah there’s a lot of problems with big Pharma but there’s also a lot to be thankful for because before 1993 there wasn’t anything anyone could do except Infuse people with steroids and hope for the best.

  12. Gala August 7, 2017 at 7:34 am #

    Sorry to hear, that you continue to progress “downhill”. I am on same boat. I think Rituxin is better then it’s newest big pharm product, but it also did not help me. I did HSCT, plasmophoresis, Tysabri, Copaxone, Rituxin and so on with no positive outcome. Now I am on Ann Boroch protocol. She was thinking that candida cause MS and treat herself from it, when it was in early stage. Sadly, she passed away at age of 51 just week ago from aneurysm. I am on her protocol just 4 month, and it seems long way up, because some people reported some positive sign in two years. Problem, that you never know… Also, as mention above, MSgym very impressive!

  13. Christopher August 7, 2017 at 4:16 pm #

    Gala,.

    How many years after diagnosis did you have HSCT done?

    • Gala August 7, 2017 at 10:07 pm #

      I was diagnosed in 1999, but had ON in 1980. Had HSCT in 2013 in Moscow.

  14. Jan August 7, 2017 at 8:43 pm #

    Hi Christopher, thank you for your reply…I appreciated reading it. Also, I like to learn new things, and that is (rather incredibly) the first time anyone ever explained the DMDs’ efficacy being there to have meds attack the drug instead of one’s body…all I ever heard was that they are supposed to help with long-term progression and no symptom relief. What you said is different and makes better sense.

    That rationale is more effective than well, it’s supposed to halt/reduce long-term progression and do nothing for symptom relief–having a better understanding is helpful, thank you.

    And Gala, sorry to read of all that you have tried…that must’ve been very frustrating going through all of that.

    I am currently at the point where I am tired of hearing about dental amalgams drugs, mold, food, pot, and many other things that can make sense but it’s just too much for me to process currently with a lot of other things going on. I will say my ears perked up yesterday during the evening news when they spoke about people going to Mexico for dental work. When helpful and kindly friend suggested going there to remove amalgams, I let out a big sigh l–but apparently many people go there for standard dental work: interesting.

    • Jan August 8, 2017 at 11:55 am #

      oops–meant to say “for the immune system to attack the drug instead of our nervous systems”

  15. Dale August 8, 2017 at 7:59 am #

    Christopher has always been great at explaining things. Kind of like the famous Richard Feynman. Not sure if all those years of feeling crappy half the week on Avonex made a difference. Do know the move to Copaxone made me worse. But since most all the data on these treatments except the Biotin movement are from the drug manufacturers and the rest generally anecdotal hard to know who to believe. Anything healthy for your body is better at helping it heal. But do I want to completely forgo my Cadbury eggs? I think not. Fundamental to all these autoimmune diseases is what starts our bodies to be confused in the first place.

    • Jan August 8, 2017 at 11:58 am #

      Yes, all hard stuff.

      And for me (despite what some may say), I was likely predisposed but then triggered by very high emotional stress–and I think that the latter, in different types, has exacerbated it.

    • Christopher August 8, 2017 at 8:54 pm #

      Dale,

      Yes you hit the nail on the head… That is the number one thing that we need to find out is how this awful disease starts in each person because it’s different in every person just like our fingerprints. Once that’s figured out then we can better tailor a treatment plan for each person based on their personal needs. Right now it’s pretty much just a one-size-fits-all which is very ineffective except in a general way. So that’s where most of the numbers come from because they’re based on large population quotients and not relying on means based on the upper half the middle and the lowest common denominator. Once we figure out the basic instigators of the attack on the brain and spinal cord then we can figure out how it applies to each person and we can treat each person individually with the best effective treatment for each of those persons instead of using drugs that seem to be effective for a large population and crossing our fingers and hoping for the best. I personally feel that we are very close on a few different fronts but how that translates into weeks months or years is extremely difficult if not impossible,. I am truly sorry that is so and that I can’t be more specific I really wish I could.

  16. Rita August 8, 2017 at 8:57 am #

    Whether it’s a placebo effect based on hope and wishful thinking or a real physical change, who cares? If it puts you in a better frame of mind with this dreadful disease DO IT! I do agree with Christopher about the over touting of anecdotal evidence about cures for ANY disease. Eating healthier is better for anyone whether you’re healthy or suffering from a disease. It is not a cure, it will not undo damaged to myelin, it will not take you from years in a wheelchair to running a marathon. Of course there are physical benefits to diet and exercise. I just tire of all the hype of reversal whether it’s drugs or OMS stuff. We need real solutions. I hate big pharm and the FDA snails but we need their partnership to find the silver bullet. In the meantime we will all do what works for us as we wait. I am an trying to reclaim some semblance of the life I enjoyed. So if I choose to eat carbs, dairy and an occasional mojito or martini I will not believe that I am robbing my body from being cured. This disease is insidious and mysterious. Some people still progress following all the protocols while some go 30 years breaking all the rules without ever progressing! People speculate why but nobody knows . Go figure. MS did not come with a road map it came with a maze. So everyone find the path that gets you to feeling more like you. Thanks for saying it out loud Christopher in such a respectable way.

    • Christopher August 8, 2017 at 8:43 pm #

      Rita,

      The eating healthier is mostly important for avoiding foods that cause inflammation. The health portion of it is actually secondary. If you notice your own personal medical history I’m sure you will find that you’re a very healthy except for the multiple sclerosis like many many other people with MS. So the diet is only problematic in the way that certain foods in our diets can cause rampant inflammation. Those foods are already well-known and they’re usually in the groups of dairy, grains, and of course sugar is a very big villain in causing inflammation. The rest is related to food allergies which is usually found through trial and error dieting or better known ask elimination diets.

      • Rita August 10, 2017 at 8:38 am #

        You are correct and my doctor reminds my when I have my physical by saying “if it wasn’t for the Damn MS you’re basically healthy! Yes I try to avoid those inflammation causing food but I treat myself when I’m miserable or throwing a private pity party of lasagna, lemon drop martini and tiramisu with a cappuccino! Instead of putting my pinky finger in the air when I sip my cappuccino I use my index finger! My party could be for a day or a month depending what the new physical challenge is I’m facing. After 40 years of crazy diets, drugs and crazy “cures” I’m like a person who no longer wants chemo. No mas just let me live and enjoy my life at this point. No jumping off the cliff but occasionally walking to the edge before I turn around. Combination of defiance with stupidity sprinkled in :-).

  17. Jan August 8, 2017 at 12:00 pm #

    Yes, Rita, “go figure.” Many mysteries.

  18. Christopher August 8, 2017 at 8:28 pm #

    Gala,.

    You may have gone to Moscow to have a procedure done but I believe that it was probably just some sort of stem cell procedure unrelated to hsct. HSCT is a very risky and very involved procedure for treating multiple sclerosis. It doesn’t make any sense to try that type of procedure just for optic neuritis. With hsct you have to have your entire immune system wiped out with chemotherapy drugs, which is very uncomfortable and risky and requires a hospital stay of up to a month or more in clean rooms. Then after that they take the treated stem cells that have come from bone marrow and reintroduce them into your body, usually intrathecally which means into your spine directly. Some people are just very very lucky that some of these stem cell procedures work well. Usually that’s attributed to not having ms for very many years or having a fairly benign course. But for the most part people going to other places for stem cell implantation is a very bad idea because most don’t work and can actually cause worse problems like lymphomas. Again this is another example of too much exuberance images for new medical technologies that haven’t been proven yet. Stem cell implants are real thing and they work in some areas, but the technology is not ready to fix things like aggressive them as yet. Unfortunately we are still many years away from understanding how they work well enough to make it safe for people and to actually be effective it restoring damaged tissue and the brain and spinal cord. Trust me I have been desperate enough to try and get the procedure done in other places and even here in San Diego where there is a company that will perform a stem cell procedure using stem cells derived from adipose fat and treated to become neural cells. Unfortunately though it would be $35,000 for something that would do absolutely nothing. Doubtful that it would be dangerous but it would be completely ineffective as those cells would be too big to pass through the blood-brain barrier. I am glad that whatever procedure you had done helped you out. But I am thinking seriously that whatever it was was just random and it was a one-in-a-billion chance that it actually helped you out more than actual proven science. Those odds are just too great for most people especially the people with very aggressive and Progressive multiple sclerosis.

    • Gala August 9, 2017 at 9:59 am #

      No, Christopher, their protocol almost identical toDr. Burt protocol on Phase 3 trial in Chicago. I just got to 25-30 % that not responded. Even though maybe it slow down progression

    • Gala August 9, 2017 at 10:03 am #

      I had ON long time ago and was not diagnosed then. Only after I got others symptoms, I understood, what I had before. I have SPMS and EDSS 6.5

  19. Christopher August 8, 2017 at 8:37 pm #

    Speech to text is very iffy on my phone so I apologize for the bad grammar. One of those sentences above should read “aggressive MS” not “aggressive them as yet.” Also above it should just say exuberance not exuberance images. Sorry about all the mistakes my hands just aren’t working very well today.

    • Jan August 9, 2017 at 9:40 pm #

      Christopher, rest assured that most can probably figure out what you’re really trying to say. With text-to-phone, I still chuckle with a friend whose name is Jane when my greeting comes out as, “Hygiene,” haha.

  20. Diane Toole August 8, 2017 at 9:17 pm #

    Dale – thank you so much for steering me to Trevor Wicken’s MSGYM site. I found a number of his videos on YouTube and as you say, he is very encouraging and helpful. This is exactly the kind of useful information I need. I wouldn’t have known about it except for Richard’s blog and your comment – so thanks again!

  21. Dale August 10, 2017 at 12:44 am #

    So finally a drug that might show some promise for ALS!! As MS is also a neurodegenerative disease I wonder if they will look into its potential utility as a treatment.

  22. Dale August 10, 2017 at 8:30 am #

    More than welcome Diane! I can’t do a lot of the exercises but certain ones really have helped. And being surrounded by positive people filled with hope sure helps. Trevor has Celiac and long term issues with Lyme which he says lead him on this path to help people with autoimmune diseases particularly MS. I think its the Big Hand on the Throttle upstairs that steered him to help people like us.

  23. Jan August 11, 2017 at 2:25 pm #

    So, today’s MD advice was Ampyra and Ocrevus.

    Feel free, anyone, to comment re personal, empirical thoughts of either. Very meds-sensitive me is in the mind for an electric scooter; after 12 years of MS sans all MS meds but plenty of stress and now a wrist in a splint (prior cast), I will need time to digest those ideas, or at least the Ocrevus idea.

    • Jan August 12, 2017 at 9:04 am #

      Likely a search bar on MailChimp and access to all of the blogs would be helpful because I think people commented about Ocravys and Ampyra before…Christopher feel free to chime in, thanks. Also please remind me of your medical-type background.

      • Christopher August 13, 2017 at 12:58 pm #

        Ocrelizumab is a humanized monoclonal antibody that is similar to Rituxan. Rituxan is a chimeric mAb (meaning it’s part human and part animal), which can be rejected by the body easier. They both kill B cells with a CD20 protein (one of the main culprits in immune attacks in MS), but they are both different drug molecules doing essentially the same thing. Ampyra amplifies the chemical part of a nerve signal so that the signal travels faster for better movement–think of it like turning up the water pressure in a hose. But Ampyra doesn’t work for everyone. With Ocrevus it’s made supposedly for progressive MS, but it’s only worked really for relapsing forms of progressive MS. So it may be helpful for people with PPMS or SPMS who still have active inflammatory disease. But for people with progressive MS who are in the degenerative phase without active inflammation anymore it seems to be fairly useless. BUT… you need to go over the information with your doctor.

        Jan,
        I was in college for a degree in cellular biology about to transfer to UC Irvine when I had to drop out because my condition became too unmanageable. I went from a 3.82 gpa to 3.6 because I couldn’t keep up. I had been an assistant in one of the stem cell labs on UCI campus for one of the professors I know. I have a long history with the university–my mom was a secretary for the first dean of biology there Howard Schneiderman, who eventually went to work for Monsanto. I still communicate with professors there, and have been really lucky to meet some of the biggest minds of the 20th century there like Ralph Cicerone who was the chancellor for a few years and used to come to the radio station a lot, and the kooky philosopher Jacques Derrida who would hold court for hours (and many pitchers of beer) in the pub. The whole biology department is pretty fun people who really don’t mind talking shop for hours. Plus I’ve always been a science geek so I’m usually in the middle of researching something. Didn’t mean to write so much, but I thought this would help give a better picture of where I come from.

  24. Jan August 11, 2017 at 3:26 pm #

    FYi re Copaxone: today’s WSJ has a front-page business article on Mylan aiming to soon mfg. a generic, now brand-named Copaxone by Teva. I don’t take it, but just fyi.

  25. Jan August 12, 2017 at 11:30 pm #

    And does anyone else find the site called dollars for docs disturbing that they get payments it appears from drug companies?

  26. Dale August 13, 2017 at 12:42 am #

    Ugh. Hey, while we’re at it, whatever happened to CCVSI? That was a big deal for a while, now I don’t hear anything about it. Anyone had any luck with it?

    • Christopher August 13, 2017 at 4:13 am #

      No, it was complete hogwash. CCSVI is a dangerous and useless procedure, and I am glad it slipped into the noisy background.

  27. Jan August 13, 2017 at 5:15 pm #

    Christopher, thank you for all of the meds information…also your background info I found to be very interesting and not long at all to read.

    Plus, we really like Irvine–would like it even better without MS!

    • Christopher August 13, 2017 at 6:31 pm #

      That’s for sure.

  28. Jan August 14, 2017 at 5:28 pm #

    Hey Christopher my doctor does not like blogs however I think you have good information, and I like them because I learn about things otherwise I would not have and also hopefully contribute on an emotional level.

    LGiven that I have an SPMS destination, I will have to weigh how I feel about Okrevus and its potential value versus the icky stuff mentioned on their kit, being injection site issues that could land somebody in the hospital I think that is scary.

    Coudn’t I just take a Calgon-type bath to take me away from all this or something? (Ha).

  29. Jan August 14, 2017 at 9:04 pm #

    I find it rather curious that Ocrevus was only tested on RRMS and PPMS, not SPMS…apparently, from what I’ve read and heard it’s only helpful with active MS perhaps then an oversight in my not getting the gadolinium recently with an MRI never had enhancement results before, and I really didn’t want to keep putting that stuff in my body, although my neurologist later so that’s only when you get a ton of them. But I don’t think anyone really knows the long-term affects of contrast. Come to think of it but probably couldn’t be any worse than what I’m going through now.

    Richard, I spoke with Genentech this morning and they forwarded to me there lengthy mid study info if you’re interested I can forward it to you. I’m most concerned about with the literature says about infusion reactions and PML.

    My husband is more concerned than I about my potential to be bedridden in time. Nasty MS slippage has been very gradual over 12 years but really only been more egregious just in the last year.

    On somewhat of a different topic, Dr. Google netted interesting info about drug names including the FDA and creative marketing people with branding…and a nice break from my decision of whether or not to try meds like this.

  30. Jan August 14, 2017 at 9:07 pm #

    And with all the technology, one would think that a cell phone could distinguish between the “they’re, there, and their homophones but obviously not!