Stem Cells and Me

My flirtation with stem cells is winding down, the Phase One portion of the festivities coming to a close. FDA approval for the Tisch Center Phase Two trial has been announced. I hear the stats on the Phase One study are impressive. This is a big deal. Traditional therapies not withstanding, cell therapy is the future. I have been proud to be on the maiden voyage.

I did not win any medals. My pulmonary embolism and a debilitating skin condition, diagnosed as Erythrodermic Psoriasis (another autoimmune disease), followed on the heels of the first infusion. That did not help. No one knows if age and length of time since diagnosis were factors. Great expectations do not always pan out.

I am steadier on my feet and walk faster and with more control. Marginal change can be huge in our very personal struggles. I discovered physical therapy as a complement to the trial. Getting my head out of the sand carried me some distance.

I do not minimize the psychological power of participation in this bold experiment. It was a contribution to the future of medicine and our own futures. I have no regrets and would do it again. I continue to look forward to the day when a neurologist will say to me, best wishes. Sorry it took so long.

62 Responses to Stem Cells and Me

  1. Sandy Stolaronek February 4, 2016 at 2:50 pm #

    Oh my, YES Richard, I would absolutely love to one day be able to say that, I used to have multiple sclerosis! I am so ecstatic that you are going into phase 2 of the stem cell study and with some, marginal improvement, no matter how small the improvement, I’m extremely excited to hear about it, because it gives us all hope and I know that I speak for everyone when I say, we are SOOO HAPPY to hear this wonderful news!!!! Good luck with trial two and keep on trucking through and we will all be right behind you, cheering for you, no matter what!

    • Richard M. Cohen February 5, 2016 at 6:49 am #

      Phase One subjects cannot be in Phase Two. Protocol. That is okay.

      R.

  2. Lisa Guyder February 4, 2016 at 3:02 pm #

    Sandy what do you mean you used to have multiple sclerosis?

  3. Christopher February 4, 2016 at 3:56 pm #

    No, she would like to one day be able to say “used to.”

  4. Christopher February 4, 2016 at 4:12 pm #

    Unfortunately, Richard, you ‘hit the nail on the head’ about disease process time. The longer you have active disease, the less the stem cells can do. I’m doing some research on a company called Stemgenex. They offer stem cell therapy with adult mesenchymal cells from skin and adipose fat, even though MSCs are fairly useless for MS. They charge almost $15,000 to be in their clinical trial even though that type of cell has already been proven ineffective for MS.

    • Richard M. Cohen February 5, 2016 at 6:51 am #

      Ripoff?

      R.

    • Matt February 8, 2016 at 1:34 pm #

      I had stem cell treatment with stemgenex 4 months after being diagnosed and it actually got rid of my liaison on my spine, still have liaisons on brain but at least it was a start

      • Christopher February 14, 2016 at 11:38 am #

        That’s the problem, Matt. It’s too difficult to tell what caused the healing that close to an original diagnosis.

  5. Lisa Guyder February 4, 2016 at 6:43 pm #

    Sorry sandy I just realized that didn’t make sense SMS for you messing with my brain

  6. mary February 4, 2016 at 11:51 pm #

    I keep reading stories of MS patients going to Northwestern Hospital in Chicago to see Dr. Burt for the stem cell therapy thought to reboot the immune system and slow down or stop MS.
    One such individual raised his funds via crowd funding and flew from the UK to receive said treatment.
    I would be willing to pay for such treatment but it seems I would have to sell everything I own and then some to afford the $100,000 quoted from some of the sources.
    I hope the stem cell therapy works for you Richard. You could use a break man!!! Thanks for sharing your progress. I’ve been following along online.

    • Christopher February 6, 2016 at 10:40 pm #

      What you are talking about is called HSCT therapy. And it’s only helpful in early disease. These things don’t matter as far as the number of years, but the amount of damage to neuronal cells and glial cells. The longer the accumulation of damage then the less stem cells can help.

  7. Pam I Am February 5, 2016 at 12:25 am #

    At this point in my disease process, I don’t imagine stem cell treatment is in the cards for me. And even if it were, I don’t imagine it would help much since I’m 23 years into the disease. I’m just hoping that it eventually becomes the cure for as many as possible.

    As for physical therapy, it has caused more problems than it’s helped. I’m always fatigued before I even begin, and the exercises trigger my myoclonus and leg spasms. Oh well, I may not make it over the mountain top, but just a glimpse of the promised land is still satisfying in its own way.

    • Christopher February 6, 2016 at 10:56 pm #

      Pam,

      The amount of years doesn’t matter… it’s how much damage to the axons and the glial cells. You never know, stem cell therapy could help a lot possibly.

      You should check for physical therapists familiar with MS, and not just ones who say they are either. PT for MS should go slow, because any fast movements will initiate spasticity. Physical therapy in water works really well. And check to see if they have an E-stim device to help retrain the nerves. Don’t use a PENS device, it’s totally different and won’t help. It has to be E-stim. And they do help–I’ve used one in the nursing facility when I was recovering from a bad relapse.

      • Pam I Am February 7, 2016 at 11:52 pm #

        Thanks so much for the detailed info, Christopher. That does give me a little more hope. Unfortunately, I’m restricted by my provider network so I don’t have a lot of options at the moment, but at least now I know what questions to ask if my situation changes. You’re a gem on this forum, Christopher, and I really appreciate your insights.

        • Christopher February 9, 2016 at 12:45 pm #

          Hi. I hit the wrong key… I meant to type TENS device, not PENS device. Sorry for the mixup.

  8. Wendy February 5, 2016 at 12:49 pm #

    It seems like there is a lot of conflicting information. I do not think anyone can make a blanket statement like, Stem Cell therapy will not work if someone has had the disease for many years.

    I watched a documentary called “Can You Stop My MS?”. It is available on You Tube. It shows patients at different stages of the disease. They all benefited from the treatment . One man who was using a wheelchair, is now walking a year after treatment. Up up and away!!

    • Christopher February 6, 2016 at 11:16 pm #

      Wendy,

      You are partially correct, but for the most part the longer the disease is actively damaging the less ANYTHING can help. Be very wary of videos on YouTube–most don’t use good science and are actually PR in disguise. There’s an incredible amount of factors involved, and also not all MS is created equal. MS is actually a condition that could be caused from multiple things. I worked in a stem cell lab at UCI, and I have been doing research for years. If you want better information about stem cell therapy, try emailing a researcher with your questions. I would recommend emailing Hans Kierstead at UCI. You can find his research page with his CV and email at http://WWW.UCI.edu

      • Wendy February 7, 2016 at 3:20 pm #

        Christopher,
        I really appreciate your comment and thank you for the contact!!!

  9. Brian L. February 5, 2016 at 2:57 pm #

    So glad to hear that you seem to have experienced a small improvement. That’s huge considering a phase 1 trial is only trying to prove safety. I’ve said it before and I’ll say it again, thank you for being a guinea pig for us! And so begins the agonizing wait for the results of the phase 2 trial. I agree with you that cell therapy is the future. Let’s hope we’re around long enough to partake!

  10. Sandra February 6, 2016 at 1:30 pm #

    Just beginning to read your blog, Richard. Your courage inspires us all. Thank you for sharing your ups and downs. Just wondering if you (or anyone) has ever tried Rituximab (Rituxan) for MS? Just beginning to hear more about this. It appears it is soon to make it’s second appearance with a new name, but essentially the same drug. And been around for quite a while……

    • r. cohen February 8, 2016 at 8:10 pm #

      Tried the drug. Nop efewct.

      R.

  11. Sue in TX February 6, 2016 at 2:13 pm #

    Yes Sandy, rituximab, is something I’ve been keeping tabs on for awhile through the press and other MS forums. It’s trials made some statistically great improvements and the Cleveland clinic has established a protocol for using it. unlike therapies that target T cells, Rituxan targets specific immune B cells. I understand that insurance coverage is an issue and that at least up to now it has been used off label for mS. What’s changing ? Are you not satisfied with your current DMD? I understand neuros want to have tried other approaches before using it because of the risks, including PML.

  12. Christopher February 6, 2016 at 11:25 pm #

    It’s a monoclonal antibody drug, much like Tysabri. That’s what the ‘mab’ at the end of the name stands for. They are both very good drugs, but they both also carry risks that limit the amount of time you can safely take them. And PML is the worst of those risks. It shouldn’t dissuade you from taking either one, but just know you won’t be able to take them indefinitely.

    • grandma nancy February 7, 2016 at 2:46 pm #

      Christopher,

      I’ve been on Tysabri for 4 years now. I have blood work every month with the infusion and check for JC Virus every 6 mos. My neuro hasn’t cautioned me about how long? Any ideas?

      • Louisa February 7, 2016 at 8:09 pm #

        Hi grandma,
        my neurologist ( celebrated ms specialist) told me as long as I am ijc negative, there is no chance that I can pml. There is a high rate – about 10 percent per year- of people converting from jc negative to jc positive status. But as long as the negative status continues, I have been told I am cool.

        • grandma nancy February 8, 2016 at 1:55 pm #

          Thanks Louisa. That’s what is so good about this blog – other’s info that can give me hope.

      • Christopher February 8, 2016 at 3:06 pm #

        As long as your doctor thinks you’re safe from developing PML or any opportunistic infections you should be just fine. And there shouldn’t be any reason to stop taking Tysabri if it’s working well for you. PML only develops if you have a large amount of JCV antibodies and you are also immunocompromised.

  13. Jill February 7, 2016 at 4:41 pm #

    Richard: Just wondered if you had read an article on page 44 of the fall/winter Momentum issue from the NMSS. The article was to encourage participation in research, but what was interesting was the MS patient who received the study drug was In a nursing facility due to her deteriorating health and experienced such a dramatic response to the drug, she was able to return home and was walking a mile three times a week. I discussed the article with my doctor who is a MS specialist. He was skeptical. I then contacted the editor of the magazine who said it was a phase 2 drug study on Ibudilast which is a drug already used in Japan for asthma. It is on the fast track for FDA approval in the US for ALS. I told the editor I was surprised that a patient with this sort of dramatic improvement was not more publicized.

  14. Christopher February 8, 2016 at 3:13 pm #

    Jill,

    You first have to find out how long that patient had multiple sclerosis to begin with. Some patients can be hospitalized and bed bound but only had have been suffering from MS only a short time and that’s why they have such a dramatic turnaround. You have to be careful with those type of articles because they don’t give all the particulars that are important to know ahead of time. Plus there’s other information that you need to know besides the amount of time of disease activity.

  15. Gala February 9, 2016 at 8:54 am #

    I Had HSCT almost 3 eYears ago and reading/following several Facebook group regarding this treatment. Some results just blow you away! It is real! With even video not staged. But result varied and a lot of people reported no improvement, but stopped progression. Of coarse it depends of damage you already have. Result about 75%. Bad news I am 25%. But good news 2.5 years my fatigue was significantly diminished and I was able to tolerate PT and Aqua therapy. Even now I continue with pool, but generally speaking my condition continue worsening very slowly and I am very close to wheelchair and I do not think I would be able to tolerate it. Today I read interview with Dr. Sadiq and he was telling that 70% of participant in phase one reported improvement. But I have doubts about it. Richar, do you know if blog exist, where participant of this treatment share their progress?

  16. Sandra February 9, 2016 at 10:13 am #

    Jill, I agree 150% with Christopher. Some patients that have not had the disease for a long time can make amazing rebounds after a major relapse because of less disease burden. From what i have read, and please correct me if i am wrong, but someone that has had MS for a long time and had eventually gone onto the “progressive stage” is more than likely not getting hit with new lesions anymore but are experiencing what specialists call neuro-degeneration due to long-term disease burden. However, no one can say when you have for a certainty crossed over into that zone. But who am I to say? I still for the life of me cannot figure out why there are still an estimated 400,000 that have MS (that figure has been used for at least 10 years now) but yet i read elsewhere that every 60 minutes, someone is diagnosed with the disease. Maybe i am just mis-informed…..

  17. Nik February 10, 2016 at 7:21 am #

    I see a lot of people on here have tried all sorts of medications and treatments. I’m wondering if anyone has turned down all modern medicine? I am new to this and have refused all meds. 18 months out Drs aren’t diagnosing me with MS, only CIS. Read the Wahl’s protocol, and I’m not following completely, but have adopted some of it into my diet. Would love to hear of anyone has had long term help by changing their diet and exercise. I have had a friend that seems to have tried a handful of different meds and nothing seems to help. She is contemplating trying another. She has never changed her diet. Makes me wonder……
    Fingers crossed that the Stem Cell trial keeps going in the right direction.

    • Rob M February 29, 2016 at 9:52 pm #

      Hi Nik
      I’m a 20 year MS vet. Took Avonex from 99=05 don’t think it made much of a difference. In 2012 I adopted the Overcoming MS lifestyle of George Jelinek. If you’re interested in therapies that focus on diet, exercise and vitamin D check it out. I’ve been vegetarian plus fish, no dairy since ’12 and feel good. Lost 40 pounds and kept it off. Following the lifestyle is a challenge, but I think it’s stabilized my condition. I have good days and bad days, but I can still walk for about a mile before my right left gets really heavy. Props to Richard for trying the stem cell therapy. Good luck. –Rob

  18. Sue in TX February 10, 2016 at 7:40 am #

    Yes. There are too many of us.

  19. Jan February 10, 2016 at 9:47 am #

    Hi Nik… I think that your question qualifies me for a response. Other than a brief try at LDN very early on (not the same as to what you are referring anyway), I have not tried the DMDs and do not plan to. I am not new to this: into year 11. Three strings of 3-day Solu-Medrol infusions: done with all that, too.

    Will say that I am rather reeling over the high number of drug commercials on TV (and how they’ve taken over some cool songs–music remains powerful to me). I was at a H.S. event many years ago in the home of the late Amgen creator. No further comment, other than Amgen was mentioned in the WSJ as the highest grossing drug company. Sure, they serve some people, but I won’t go there.

    Yes, I have been working on diet (mostly no dairy, no wheat), exercise (I swim nearly every day in our pool in the summer; 1-2x week in the winter in a community pool–should be going more, but I prefer writing/working to the walk into the community center and the thought of being cold). I have been advised by the Mayo Clinic to purposely stretch 2x/day. Do I? Wish I could say that I do–mostly around the house. It is a goal. Still.

    Have read two of Wahls’ books and have been also, it turns out, mostly on her levels 1-2 (not 3–too cumbersome for me). I say I’m gluten-free, dairy-free 90-95% of the time.

    From what I know, we with MS are all somewhat the same; somewhat different. I think that Christopher seems to have a good handle on it.

    Stress is a huge thing, and I continue to have more than plenty of it. Stress and high humidity are the worst for me.

    After I was diagnosed in 2005, we immediately asked for a second opinion from Mayo. According to my neuro there, how one initially presents into the office is a good predictor — but, mind you, 5 years is the first prediction mark; 10 years is even better. (That seems like an eternity to one initially diagnosed, right?) I could still skate and do everything as usual — but lost my skating about 4 years into it; cannot now walk around the block, use grocery carts as disguised walkers (and sometimes scooters if I’ve totally overdone life).

    I earlier had said that this is my year to no longer wear an imagined scarlet “M” around my neck. It is what it is. So at a recent Bible study, when a friend mentioned my former pro skating, I then said, “Yes, but now I have MS and can’t skate.” That’s all I said. Not sure why–maybe to bring the glitz and hoopla into perspective or cut to the chase as to why a younger person has a cane.

    Most have been respectful. (I am truly okay with answering Q’s, but do not seek out anything and try to not ruminate about it all). Well, after one woman mentioned that she and her friends are “praying for me” (and, btw, she has a business with related skin care products), I said to her that I truly know that she has good interests in mind, but I came for the peace and knowledge of the study and to not discuss MS. (I kind of kicked myself inside for even mentioning it earlier–but then realized that it is what it is, I said so–not a horrible thing, as I sometimes take a cane–and do not have to be anyone’s personal project).

    At the end of the last session, she mentioned it again and that she wants to give me a complimentary skin care or something item. I mention this story because it will serve to show how far I have come: we now have a boundary issue, and I plan to address it if it arises again. Because I also realized that I don’t have to work to hide this, be ashamed, or subject myself to yet another person with some great idea that will provide a cure/relief–and spin me yet again into the cycle of trying/frustration/not living life, etc.

    I can be real, yet set my own boundaries. Just because I mention reality it doesn’t mean that I’ve extended an open invitation to get involved. There is strength in knowing that.

    Now back to you (sort of)… all I can say is that I myself do better when I live my life as best as I can and on my own terms, am not frightened by doctors who can only offer drugs with seemingly negligible efficacy, and to me that means not focusing exclusively on MS. The only related thing I appreciate is Richard’s blog — for the education, humor, and connection.

    That said, everyone is different, and I respect that each takes the approach that individually makes the best sense. I wish you the best on this journey.

  20. Sue in TX February 10, 2016 at 10:45 am #

    I find MS is a singular experience which paradoxically can only be understood by others with MS. I had no real choice to begin a DMD because I had a very lengthy aggressive attack. I have started to follow Whals, but not regularly and want to commit to better adherence. Her ideas about diet make sense to me. I am not exercising enough, finding fatigue and poor endurance large obstacles. So I resolve to do more, and try swimming like Jan. And I echo Jan, this forum gives me a touchstone, somewhere to compare notes and share support. I value it and the different views expressed here. It’s truly genuine. Something that is hard to find these days. (I hope those who don’t share our journey will respect our genuine Discussions about living with MS. )

  21. Jan February 10, 2016 at 7:51 pm #

    Q for Christopher: while prepping dinner, on came a Tecfidera commercial.

    Quick background: the neuro who barely saw me, yet made the diagnosis in 2005, strongly urged me to get on Avonex right away, to not wait too long–the 3-month wait for Mayo was long but could, well, be okay–but not much longer than that. (In hindsight, I was not having a heart attack here). I did not get on it.

    Flash forward to the commercial–I sat to watch again and noticed at the bottom some words about efficacy compared to a placebo for RRMS. And now my Q: are you aware of the ages of people in the study, and the duration in which they had MS then? To me, if we don’t know that (and, mind you, I was mostly completely functional early on), I don’t think the stats have the longevity to carry weight. Am I missing something?

    Thanks, Jan

  22. Christopher February 11, 2016 at 1:03 pm #

    Hi Jan.

    I really appreciate your faith in me. I have to acknowledge that I’m not a doctor, even though I started college that way. But no, Jan, you’re not missing anything. Those informational disclaimers in small letters are just PR bunk–they are crap. Go to the Biogen website and either call or email for the information packet… it looks like a foldout map that comes in the medicine box. The age and duration of disease activity are important, but so is other drugs you’ve been on too.

    Let me clarify something… your age and duration of your disease course are NOT indicative of drug efficacy, but they are important factors. Tecfidera may work just fine for you. The problem is that none of these drugs are a cure, or meant to improve your ability. They are meant to slow progression of the disease process and/or possibly arrest it. So it’s not like you’ll see results right away, or at all. They are to keep you from getting worse. There are many factors at work that comprise a multiple sclerosis condition. There’s the autoimmune part, as well as a metabolic and hormonal influence that comprises the whole condition. And to make it more frustrating, it’s different for everyone.

    I hope that helps answer your question, Jan.

  23. Jan February 11, 2016 at 9:30 pm #

    Hi Christopher, while I suspected that you are not a doctor, it seems to me that you have educated yourself well on and have much interest in these topics — so thank you very much for your input.

    Although today was a rather rough day (I still think that I should be able to do things as usual, which is not the case and even more so during high stress times, which this is), I still have no intention of going on any MS meds. For one, I am extremely medicine-sensitive; also, I have a high JCL rating (only took it to be nice to a kindly neuro), and feel that I can do other things that do impact me: rest, exercise, diet. (But I need to work on all of them, the first two in particular).

    Really interesting what you said about the hormone component, as MS and (sorry to be so blunt) the start of peri-menopause happened at exactly the same time (the latter earlier than with my mom). Interesting.

    For me, I think that any disease slowing would have been offset by meds side effects and have been comfortable with not going on anything. However, I also see more clearly now that I really need to manage my stress better.

    Again, thank you.

  24. Sue in TX February 12, 2016 at 11:24 am #

    Christopher and Jan, I so appreciate your observations and insight. I want very badly to believe the hype of latest MS drugs, but like you, I see it’s a lot of semantics and images like the tecfediera actress diving into the pool make me sigh disappointedly. My DMD is currently copaxone. I used avonex before that. I am about 10 years out from my devasting attack and no signifant flares, in fact significant clinical and MRI lesion improvement. So yay. I
    Am grateful. I did have steroids on occasion. I’m sure you’ve heard neurologists will point out from statistics from the past 20 years that the So called ABC drugs have been used, those on ABC drugs have fared better on disability scale than those who went without. But I haven’t personally seen these comparisons. I assume the drug companies are compiling the data, which would lend bias. Do you think these stats are skewed or misleading? i would think the use of iv steroids periodically would also impact the progression of MS over 20 year span. I wonder if the current practice of crowd sourcing from MS forums gives better stats? I want a drug now to help me get stronger in my legs and arms, better endurance, and reduce my fatigue, but because I am considered relatively stable, my Neuro doesn’t think I should change drugs. But if the other drugs will only slow progression and not help my current level of disability, I am not encouraged to switch. So I read MS drug ads expectantly and try to make sense of the difficult to interrupt stats in the drug pamphlet.

    With regard to metabolism and hormones, I’d love to hear more from you Jan or anyone familiar with its impact on MS. I too entered Peri-menopause, which is medically understood to be the decade long process before menopause. I mentioned it to my well revered neurologist He said flatly it would have no effect. I challenged him, pointing out the timing of my aggressive attack involving pregnancy. He wrote it down in his notes. But had no suggestions. So it seems peri menopause is overlooked on its impact on MS and how great would it be if someone out there has explored this issue with their dr and can share. Maybe Hormone replacements or herbal supplements that can keep dramatic hormone fluctuations at bay???
    With re to metabolic issues, I would love to hear from you Christopher, or anyone out there about this. Has anyone tried consulting with an endrocogist? What are signs that ones metabolic system is faulty? Well, I see I’ve posed a lot of questions today, so I will wait, and see where it takes us. Thanks for your audience. I feel better to know you all “get it” and understand why I feel compelled to make all these questions. I haven’t given up.

  25. Vikki February 12, 2016 at 2:41 pm #

    Sue, I can only speak of my own experience since we are all different. I have been on most of the approved ms meds. In 24 years there is no doubt in my mind that they have helped slow progression. Every time I would go off of one of the medicines, a relapse would follow fairly quickly. But I think medicine is only a piece of the puzzle. Lifestyle choices factor in also. Good diet, physical therapy and exercise, keeping stress levels down, a positive attitude all have helped me. Not all of the time. Sometimes nothing helps except to just adjust to the new normal that you are presented with. I do have hope that Lemtrada, which I start on the 22nd, will not just slow progression but has the possibility to stop it. I am willing to take the risk because to me the other option is to keep progressing.
    I do feel that hormone fluctuations do influence MS. When I was pregnant, I was on no medication, and I felt better than I have felt in the years before or since. Six months after my daughter was born, I had the worst relapse I have ever had, in the years before or since then. It cannot be a coincidence.

  26. Jan February 12, 2016 at 4:39 pm #

    Hi Sue and Vikki, fyi I will respond when able. I am currently swamped but didn’t want to be silent (I think you likely know that you can count on me to address your Q’s). Jan

  27. Christopher February 12, 2016 at 5:16 pm #

    Hi Vikki.

    I am back in the hospital after another nasty infection and relapse. I was working on a big post for my blog that would explain a lot of the biology and pathology of the MS disease process. But it’ll have to wait for about a week or so. But when I finish, I invite everyone to have a look. And also to take the information and have a conversation with your doctor about how it may or may not relate to your situation. I think that’s important. There just isn’t enough space here to explain the metabolic and hormonal aspects. Besides… it would be selfish and rude since this is Richard’s space.

    • Vikki February 12, 2016 at 9:06 pm #

      Christopher first and foremost I hope you feel better soon. I would be very interested in reading your blog and I will have a lot of time in the five days of infusions coming up and in the recovery time after. Can you put the link on this page when you are done? If that is okay with Richard of course. When you are ready and feeling better.

  28. Andrew February 13, 2016 at 1:26 am #

    To Nik and anyone else considering the decision to take DMD’s or try natural alternatives. I had a very supportive Neurologist when I was diagnosed. It took almost a year to get to him and get the lumbar puncture that clarified what limited MRI results were unable to result. In hindsight, I realized my bouts of numbness and pain on my left side–which coincidentally, if I went to the Chiropractor long enough, improvement happened. I assumed my problems were from years of equestrian activity with a few significant falls. When my speech began to slur and become halting, I knew something was really wrong with me. When I got diagnosed, I had a hospitalization with a steroid infusion which immediately improved my speech. At the time, I was not taking and never had traditional medications (except for rare antibiotics) and only prior hospitalization was for a childhood tonsillectomy and a couple adult kidney stones that were too big to pass without surgery. I was told that the most current options were a DMD and why my neurologist thought they were important. I was encouraged to read a lot of information and make my own decision. The risk of side effects or adverse reactions seemed like they were not permanent should I just decide they weren’t for me. And most would occur in the first few months. (Tysabri was not yet on the market/PML risks.) I decided to choose the alternative that had the longest collected data, did not require refrigeration should I want to travel, but was the most frequent injections. I am not needle phobic and after 15 years of every other day, have only had occasional needle fatigue. I either had a positive benefit chemically or placebo, but the first 18 months, many of my MS symptoms reduced or ceased. I continued to have fatigue, but exercise, while slower a bit, made me feel better and a big cup of black coffee each morning, also helped. I had severe chills during the night on occasion for 4 to 5 months, and then they stopped. I learned from my dentist, that a slow, steady injection caused less injection site whelps. Now I get none, from injecting myself without the auto-inject device provided to make it easier for one handed self-injection. The slow, steady approach works for me with mild massage to site after injecting. AND I have to say, I feel it delayed onset of advancing symptoms.
    I was 51 years old when diagnosed, (likely having it for ten years prior). I only had about 4 major exacerbations during a ten year period–three days of oral steroids to the rescue. Only in the past three years have my symptoms advanced. It is also coinciding with a progressive heart condition that is genetic and I received a pace-maker/defibrillator device implanted three years ago. Because of this device in my chest, I can no longer have MRI’s. So I don’t know if I am just experiencing aging or heart, or MS symptoms progressing. My Neurologist says, yes–meaning all the above. I don’t know if I would have had the really decent ten+ years I had without taking Betaseron, but I am glad I took a chance on medicine. As many here can probably relate, when friends and family find out you have MS, you get an onslaught of well meaning suggestions for something they read or heard about a diet, a supplement, or strategy that will help/cure me. If I had twenty bucks for every time I got told about removing aspartame from my diet–something I never consumed to begin with–I could buy a plane ticket to almost anywhere in America. I continue to use complimentary/alternative medicine–acupuncture for nerve pain, and several homeopathic medicines for various symptoms. I cannot use the Wahl diet entirely, since I have to be very careful with vitamin K, taking blood thinner. I also spent almost twenty years of my youth as a vegetarian, so her recommendation of “organ meats” kind of grosses me out. But healthy, local, non-chemically modified foods are available where I live. They cost more, but make me feel better about what I consume and where I spend my money. Good luck to anyone making a decision for them self about what to do with a fairly new diagnosis. For me, I would have wondered if the medicines could have helped. Now I will never know if they did, as I believe, or didn’t. Having medical/pharmacy insurance that handled the costs, was also a major factor and benefit, thanks to my wife’s employment by a large health care corporation.

  29. Christopher February 13, 2016 at 10:05 am #

    Thank you for that Andrew. Very well written and explained.

  30. Sue in TX February 15, 2016 at 11:19 am #

    Richard, thank you for sharing your stem cell experience with us. It’s a courageous step. Re Reading the responses , including my own, i see that although we all manage our own MS uniquely, we share an understanding about the careful deliberation a treatment path requires. The uncertainty, the stakes, and cost, either Direct or push us to a treatment protocol and lifestyle changes. I so hope you get all the benefits from the stem cells. To be able to possibly rEboot ones immune system is truly awesome. And I appreciate hearing how others have managed their MS. I have felt desperate for a new treatment lately, but am reminded to keep forging my own path. Thanks again.

  31. Jan February 17, 2016 at 2:33 pm #

    Sue, I think you have a very nice way about you with how you write–“just saying.”

    On another note, I may need to get off of my soapbox — “Calgon, take me away!” (Anyone recall that ad?) Meaning, I need a break to chill and relax. But…

    Because grabbing a bite of lunch in my kitchen while reading the WSJ, on P1 of today’s Business & Tech section is an article entitled, “Ads for Costly Drugs Get Airtime.” Of course, it got my interest, esp. after mentioning MS drugs, too.

    The ads are rather explainable (and annoying) from a financial money-making perspective. But the info from a Northwestern marketing prof who advises healthcare companies (notice that) on branding is rather telling. Egregiously so, I think.

    My late aunt passed away from the lung cancer issue mentioned. Could the drug have helped her? Maybe. Then again, she was 80 and smoked most of her life.

    So that all tells me that I should perhaps break from my fave evening national news, swim, eat right, relax, and just read the WSJ (at least I can select the timing of applicable information, get more properly educated on it), and leave behind the $$$$ flying into my attention from the high occurrence of drug commercials well-placed during the news that are soaking with warning words and copy and healthy actors and not be so annoyed at them.

    I know we are all often trying to make a living, but I myself bypass LinkedIn ads for freelance work writing for drug companies. Won’t do that.

  32. Jan February 17, 2016 at 5:26 pm #

    I’m about cured!

    Sorry, not from MS, but from my “addiction” to the news. I have realized that all of the drug commercials (that have been such an irritant) are taking up too much of my mental energy and are at least serving the purpose of getting me away from them.

    I will still read my WSJ. I’ll get the weather from Google (sorry, Al at The Today Show and my local weather people), and not live by the news clock.

    I may need a “news titration” but think that this will reclaim some peace and a more pleasant me. Time to go breathe, think about something of more value to me, and time to care more about the needs of others around me–to make a difference, however small, instead of being influenced in ways that only serve to frustrate me more. Yep.

  33. Jan February 17, 2016 at 10:34 pm #

    I will soon break from talking and just read responses from others but first want to say that I am back to reading a book–this one I have had for years, actually. The time is right, and it interests me, whereas before it just sat on the shelf.

    In due time, I plan to read others that have also made it through moves only to yet again collect shelf dust. And maybe I will get through the lot in such time as to find a brand new one… Richard’s book no. 4.

  34. Sue in TX February 18, 2016 at 4:19 pm #

    Thanks Jan, I appreciate you saying so. Expressing oneself on blogs is an interesting experience. How to use the correct tone and casualness of speech as one would use in a Face to face situation isn’t always clear. And sometimes proper etiquette isn’t intuitive. I’ve enjoyed your response. Your writing style reminds me a bit of Elizabeth Gilbert (Eat, Pray, love). Similar to a close girlfriend, who Is chatty and puts interesting observations out there. I’ve enjoyed your distinct voice, which is bubbly and lively, even when your down. Not a simple task! Take care. Maybe look me up in Houston?!?

  35. Jan February 19, 2016 at 9:39 am #

    Hi Sue, (and so much for my silence!)… wanted to say that I appreciated your kind reply, thanks. I almost saw that movie–and now wish that I had. I just looked her up and listened to two of her TED talks — and enjoyed and appreciated both.

    A couple thoughts that caught my eye: What you’re doing is “not from you, but on loan to you,” and “Keep showing up.” I suspect that where we ultimately derive perseverance may differ, but I liked her thoughts. Thank you for mentioning her. And I thank you, too, for your kind words that have also given me much joy at a rather challenging health time.

    Ah, so Texas for you means Houston. (Brave you are, as I know that it is humid there–not easy with MS). Will say that I am in the Dallas area, and if you should come up here, you do the same. (Richard, you have my permission to give Sue my email address, should she ask, and if you have the time and inclination to do that. Thanks for allowing this diversion on your blog: much appreciated).

  36. Jan February 19, 2016 at 1:11 pm #

    This one is for Richard (on his journey of chasing hope)…

    I really prefer to not suggest something unless I have a full grasp or read and feel similarly. But with title of “Eat, Pray, Love,” your current work on hope, and your I think being somewhat perplexed over Buzz in a prior book all on my mind, I will go ahead and mention that what I am reading is “Prayer; Finding the Heart’s True Home” by Richard J. Foster (1992).

    This is the book that a then friend gave me when I was struggling at the time with the topic. And the book that I never read in thinking that it could be boring or something. Always had other things to do.

    But something (maybe escaping all the TV drug commercials or just the right timing in my life) inspired me to pick it up — that particular book, amidst others i had not read on a shelf in the back of my closet. And you know what? It surprised me (only on Ch 2 now) in that it is drawing me in with something I look forward to reading. He writes about real feelings, my feelings very often — the good, the bad, and the ugly. Real. Relatable. Not lofty holier-than-thou or doe in the headlights fare at all. Human.

    Risky to mention it to you now because I’m just getting started. But it may also give you a helpful glimpse into the Christian perspective on hope. I understand it isn’t the only perspective out there. (In fact, I’d like to read the Koran in English in due time just so I can understand where my two Muslim friends are coming from — other than religion, I see little difference in us. Yes that is a biggie, I realize).

    So I will continue on the journey of this book. If you should decide to read it I’d be interested in knowing your perspective (but may need to wait for your own book).

  37. Christopher February 19, 2016 at 4:35 pm #

    Don’t have to look too far for literary examples of hope. Just read the story of Pandora. The Greek myth speaks a lot with very little, and at the very end of the tale. There’s also a quote by the German philosopher Paul Tillich that seems to be especially poignant…

    “Hope is easy for the foolish, but hard for the wise. Everybody can lose himself into foolish hope, but genuine hope is something rare and great”

    I think I’ll stop talking here. People way more sagacious than me have more to say about this. Seek them out, because they’re definitely out there.

    • r. cohen February 27, 2016 at 3:21 pm #

      Great quote, Christopher.

      R.

  38. Dale February 21, 2016 at 11:14 pm #

    Christopher what’s the difference between a Tens unit and E-stim. I thought they both just caused the muscles to repeatedly contract over time.

  39. Christopher February 22, 2016 at 4:24 am #

    Hi Dale.

    The TENS is for relieving pain. The E-stim is for helping rebuild muscle strength and also to help retrain upper and lower motor neurons. One also helps build pelvic floor muscle strength too, but I forgot which one.

  40. Dale February 22, 2016 at 11:27 pm #

    Thanks! All I’ve seen for sale are TENS but must be looking in the wrong places.

  41. Christopher February 23, 2016 at 1:53 am #

    The problem might be the name. It’s actually called a Neuromuscular Electrical Stimulation (NMES) device. Here is a link to a multi-function unit that was recommended by Dr. Terry Wahls: http://www.djoglobal.com/products/empi/empi-continuum

    There’s many others, and I’ll try to find the name of the one that was used on me in a nursing facility–it worked fairly well.

  42. Dale February 24, 2016 at 11:18 pm #

    Thanks! The link here says the company was phasing them out Dec 2015. So presumably there’s others.

  43. Dale February 28, 2016 at 1:20 am #

    I found out my friend’s grandmother who had MS had 9 children because her symptoms went away when she was pregnant. Someone was researching Estradiol as it is a pregnancy hormone that might be linked to symptom abatement. It is available in Europe but not the U.S. to the consumer except in a very low level cream. Anyone hear of this?

  44. Jan February 29, 2016 at 9:43 am #

    Yes, I have… a few years ago, UT Southwestern was doing a clinical trial in conjunction with some CA dr./prof. and Copaxone. I would have qualified, but I don’t take the DMDs.

    Have a work appt. and need to scoot but found this: .http://www.healthline.com/health-news/new-drug-could-reverse-ms-by-mimicking-high-estrogen-in-pregnancy-121114