A Shot in the Dark

MB writes, “What is the craziest/most desperate shot in the dark thing we have done to hang onto our real selves?” Hmm. I guess my answer to that has been to try therapies that I knew would not help. That would include almost one year on Cytoxan, a brutal chemotherapy drug commonly used to battle lymphomas and various types of leukemia. When the doctor says, “let’s just see what happens,” you know you are shooting with your eyes closed.
Using drugs intended to treat relapsing MS to attack progressive forms of the disease are, by definition, desperate. Neurologists who do that are well intentioned and frequently cite anecdotal accounts of these drugs having some positive effect. I have traveled that road frequently in the past, never with positive results. My time on Tysabri proved the point. I started on the drug just before patients died and the FDA pulled it from the market. Tysabri returned with only a warning label. I declined the honor. That desperate I am not.
Well, MB, that is as crazy and desperate as I got. The stem cell trial seems neither of those. I will bury a baked potato under an elm tree at midnight when there is a full moon if you think it will help. Doesn’t seem crazy to me. And what about the rest of you?

78 Responses to A Shot in the Dark

  1. Hannah November 10, 2014 at 10:11 am #

    That’s funny. I’m still trying to find my “real self.”
    That potato thing sounds sort of yummy. Is that weird?

    • Richard M. Cohen November 10, 2014 at 2:09 pm #

      Only if you do it.

      R.

  2. nancy s November 10, 2014 at 11:49 am #

    You are scaring me…I have been on Tysabri for about 2 years. (and I have read the booklet with the warnings.) I do the recommended blood tests. Hoping it is helping the progression but who knows? I am currently trying out the Walkaide for drop foot. At least now I have not thought of asking anyone to kick my leg to help it move! Am trying to maintain my true self and not haing MS define me.

    • Richard M. Cohen November 10, 2014 at 2:11 pm #

      Don’t pay too much attention to me or anyone else.

      R.

    • Mary Ann November 17, 2014 at 11:54 am #

      Dear Nancy,

      I use the Dorsi Lite and it has helped a lot with my drop foot and walking fatigue – it’s amazing how much these little things help to be more “Normal”.

      Best Wishes!
      Mary Ann

  3. Amy Corcoran-Hunt November 10, 2014 at 12:16 pm #

    I have very aggressive PPMS, from wobbly walk to wheelchair in a handful of years, and no treatment for me.

    My shot in the dark is Dr. Terri Wahls’ Paleo food plan, and her neuromuscular stimulation. Nothing else to do, so bring it on. After a month and a half I know three things: I’ve got more daily energy, inadvertently lost a few lbs, and the stim has made my mostly unusable legs stronger. A physical therapist took the trip with me and saw improvement, it’s not just me.

    So I’ll continue. Why not?

    • Richard M. Cohen November 10, 2014 at 2:13 pm #

      Absolutely. Keep going. That is not a shot in the dark.

      R.

    • Betty November 11, 2014 at 7:45 pm #

      I’m also a Terry Wahls devotee. 20 years and SPMS and I am done with the drugs. I have been following Wahls for two years and have seen dramatic changes in my energy and attitude. Most recently I’ve taken a leave from my job to focus 100 % in Paleo Plus. It’s the hardest thing I’ve every done because I have to own this. Diet, exercise (whatever that looks like), and documenting it all. All, please check out Terry Wahls. Her science is my hope. It might be yours, too. Amy, were you at the seminar in Cedar Rapids 9/20. 21?

      • Amy Corcoran-Hunt November 12, 2014 at 7:25 pm #

        Was not there, Betty. New to Wahls. Sucking the joy out of eating (but not having use of my legs is a joy sucker too). I await my “dramatic change,” bravo to you!

      • Richard November 15, 2014 at 8:21 pm #

        I know Terry. She ios great. I can’t eat all the greens because o f the colon cNCER. I WIOSH YOU WELL.

        R.

  4. Yvonne November 10, 2014 at 4:36 pm #

    It’s like your journey is a map to many of ours- either just ahead of our experience, just behind or parallel. I think that’s what keeps us coming back to your blog and we anxiously wait for each insightful post.
    I like many have desperately tried so many MS treatments over the last 30 years. My latest was Ampyra 10mg twice a day which is suppose to help with gait. To quote a popular song “And another one down, another one bites the dust”. I am still trying to recover and get back to where I was before taking this drug. I have SPMS and was 90% cane and the rest using a walker prior to taking Ampyra . I am now 90% walker as I am so weak having sustained a fall. Because I was not a real “public walker person” this has effected me even more. So, will this keep me from trying the next thing that promises relief? Nope. Is that hope or denial or something else? Who knows. Just staying in the fight.

    • Richard M. Cohen November 10, 2014 at 8:42 pm #

      Y.-

      I had my Ampyra moment. No go. I picked mself up, brushed it off and moved on.There is no therapy for disappointment. Please keep your chin up and keep going. Er willget there.

      Best,
      R.

    • John Elias April 9, 2015 at 12:02 pm #

      They put me on Ampyra. It almost killed me. I stopped it and researched it. It is also used as a bird control poison. Why they would give that to people, is hard to understand.

  5. Yvonne November 10, 2014 at 6:20 pm #

    Oh yea, walk with a cane when we know we need a walker! Holding on to who I so desperately want to be because I can’t stand one more thing that causes me to lose my independence.

    • Richard M. Cohen November 10, 2014 at 8:43 pm #

      I am with you.

      R.

  6. MB November 10, 2014 at 7:44 pm #

    So much craziness and desperation over the past ten years.

    When CCSVI was the possible cure of the month, I hunted down a researcher in Detroit to arrange to have the testing done. My neurologist wouldn’t write the script because he thought CCSVI was insane, so I went from doctor to doctor until I found one who would write one for me. Long story short—perfectly clear and clean veins. I was crushed.

    I did the Tysabri dance for two years but had an attack that rendered my arm useless so I weighed the risk/reward and didn’t like my odds so I quit. Another defeat.

    Now the chemotherapy (Cladribine) which I’ve taken three rounds of already. My white blood count is really low so the doctor is testing me to rule out—-get this—-leukemia which can be a result of the—get this—-chemotherapy. What???

    I’ve gone gluten/dairy/sugar free and also followed the Swank diet for two years. I’ve even considered taking feces pills to see if that would correct the leaky gut syndrome which I was convinced triggered the onset of MS.

    Desperation is an understatement. I continue to grab at any and all straws hoping one of them gives me relief.

    So as I’m waiting for the leukemia testing to be completed I’ve decided to just smoke weed.
    So much craziness and desperation over the past ten years.

    When CCSVI was the possible cure of the month, I hunted down a researcher in Detroit to arrange to have the testing done. My neurologist wouldn’t write the script because he thought CCSVI was insane, so I went from doctor to doctor until I found one who would write one for me. Long story short—perfectly clear and clean veins. I was crushed.

    I did the Tysabri dance for two years but had an attack that rendered my arm useless so I weighed the risk/reward and didn’t like my odds so I quit. Another defeat.

    Now the chemotherapy (Cladribine) which I’ve taken three rounds of already. My white blood count is really low so the doctor is testing me to rule out—-get this—-leukemia which can be a result of the—get this—-chemotherapy. What???

    I’ve gone gluten/dairy/sugar free and also followed the Swank diet for two years. I’ve even considered taking feces pills to see if that would heal my leaky gut which I was convinced caused my MS to surface. Now that’s desperate.

    So while I’m waiting for tests to be completed (Do I have cancer?) I decided to just smoke weed. And to be honest with you, that’s the smartest decision I’ve made to date.

    • Richard M. Cohen November 10, 2014 at 8:47 pm #

      Beenon weed fot years. Only thing that makes a diffeencer.

      R.

      • Hannah November 10, 2014 at 8:55 pm #

        RMC if you’re willing to discuss – how do you use it, like vapor, or pills? Or just old fashioned joints like from the 60s? ha

      • JoanBee November 27, 2014 at 5:27 pm #

        Hahaha

  7. MB November 10, 2014 at 7:46 pm #

    Not sure what happened. Can you delete my repeats above?

    • Richard M. Cohen November 11, 2014 at 7:32 am #

      Joints. The best.

  8. Yvonne November 10, 2014 at 10:24 pm #

    Never tried the weed. Did not want to revisit my recreational drug years of smoking. Munchies and the inability to do much physically conjures up visuals that are scary. I don’t know anyone using medical marijuana. I heard it comes in pill form. I can’t walk as it is so I don’t know how it would be on weed (again remembering recreational years).

    • Richard M. Cohen November 11, 2014 at 7:36 am #

      Very personal choice. I buy medical from Califo rnia. My fingers don’t worm, so my friend rools them for mer.

      R.

      • Hannah November 11, 2014 at 9:43 am #

        Ah, but what about your lungs?! I guess that might be the least concern now…I don’t know, it’s not like cigarettes…whatever. What was it like having children around when you were using that medication, like while the laws were changing in different states, etc.? That’s a curious subject for a blog post maybe….the conversations you’ve had, or had to have (if you HAD to have them) around all the different medications you’ve used (the chemo, pot, etc.). How many “hads” can one person fit in a sentence? I think I might now have the world record.

        Also, I wonder what the studies are like about the differences between using vapor/pills/plant based. I think it is fascinating. Also did you mean “me” not “mer” in your above comment? Don’t spread rumors about your significant other if they aren’t true 😉

  9. Vedrana November 11, 2014 at 4:20 am #

    Hi all,

    Have you looked into Hematopioetic Stem Cell Transplants (HSCT) to at least halt progression of your disease. Just to note many have experiences some lessening of their disability as weel.
    My husband has MS and that is always the procedure I “keep” in my back pocket if his MS starts robbing him of quality of life.

    • Richard M. Cohen November 11, 2014 at 7:38 am #

      Sorry. I pleas ignorance.

      R.

      • Vedrana November 11, 2014 at 9:07 am #

        No need to be sorry. This is why the age of information sharing is so awesome! It is a procedure that harvests your stem cells, ablates your immune system with chemo drugs, and returns your stem cells. Once your immune system is rebooted it is self tolerant in almost all patients. It halts disease progression and works best earlier in the disease but PPMS and SPMS people see clear benefits just in lesser percentages. Many people who have had the procedure write blogs about their progress.
        There are 2 different approaches. One is myeloablative and the other lymphoablative. Myeloablative erases your entire immune system and without the stem cells being reintroduced you would die (harsher treatment). After this you will need to get all your vaccinations again. Lymphoablative is less harsh. You would survive without the reintroduction of stem cells but this shortens recovery.
        Dr. Richard Burt is doing Phase III trials in Chicago. The entrance criteria for the trial is very narrow because they want to show clear efficacy to the FDA. This procedure is performed in Germany, Israel, Russia, India, Australia, Canada, Scandinavian countries, South Africa… Most people who have had it done travelled abroad. Dr. Burt normally performs this procedure but has halted at this time trying to funnell more people into the trial. Being that this procedure is not standard of care most insurance companies will not pay for it (though some will). This is why most people choose to travel abroad. Anybody interested can google George Goss’ blog or find HSCT groups (very active) on facebook.
        George was the first guy from US to get the procedure done abroad (Germany) and has since invested a lot of time and effort into reaching as many MS patients (this procedure is used for other autoimmune illnesses) as possible.

    • Brooke Slick December 9, 2014 at 9:31 am #

      Vedrana, I had HSCT for my RRMS (on the cusp of SPMS) in Moscow, Russia, May 2013. I was the 5th American to have it done there and the 7th international patient. Since that time 100s of patients have had HSCT done there (much thanks to a 60 Minutes Australia segment that featured my friend, Kristy Cruise). Although HSCT is not a “cure”, its intent is to place the disease in a permanant functional remission (that will work!). It stops the disease and does not require returning for multiple treatments as do other MSC and stem cell treatments out there. I have seen many improvements (not promised by HSCT, but a possible bonus). I still have foot drop, spasticity, and balance issues but all have lessened. I no longer use the trekking pole that I needed 2 years prior to HSCT and my MRIs evidence that there is no disease progression. Even if I had seen no improvement, being able to live without the dark cloud of unpredictable progression hanging over my head is akin to being set free from prison. With all due respect to Richard, many of us in the HSCT world (over 6,000 strong) continue to wonder why he wasn’t approached about this treatment. We all want the best for each other. Best wishes to all.

  10. Lucille November 11, 2014 at 5:32 am #

    Have you had any results from your stem cell infusions?

    • Richard M. Cohen November 11, 2014 at 7:39 am #

      Still too early.

      R.

      • Lucille November 11, 2014 at 12:38 pm #

        Hoping you will see many!

  11. Mark November 11, 2014 at 6:37 am #

    I didn’t know it at the time, but I guess I was desperate. I have been on Tysabri for over eleven years. The treatment started as a clinical trial at Maimonides Medical Center and continued through UPENN and now Connecticut. Too late to stop treatments, I am told. I choose to believe it has delayed disability. Although, having made the jump from RRMS to SPMS, I now wonder what the next step (pun intended) is…

    • Richard M. Cohen November 11, 2014 at 7:41 am #

      No question Tysabri works for some. That is great. Keep going.

      R./

  12. Joan November 11, 2014 at 9:35 am #

    Always felt like the poster child for “Try Anything Once”. Never been able to connect any therapy to specific results though, and I so dislike the “well just be happy you’re not worse” reasoning. One thing I did recently try (due to test panel) was to give up coffee. I tried, really tried, but noticed when I “cheated” and had a good cup of coffee, I moved better. So today’s attitude is WTF, just enjoy the damned coffee. My sister died from MS complications days before her 55th birthday. I hit that milestone in July, realize I need to stop wishing for tomorrow and start enjoying today.

    • Matt November 11, 2014 at 10:20 am #

      Joan you rock. WTF is right! With all the side effects of the drugs they give us and we need to watch our coffee intake? Screw it! Give me my stems cells and a cup of coffee please!

    • Richard M. Cohen November 11, 2014 at 9:05 pm #

      Good thought. Keep on truckin’.

      R.

    • Richard November 15, 2014 at 8:26 pm #

      Amen.

      R.

  13. Glen Fauble November 11, 2014 at 10:25 am #

    Richard allow me to start this correspondence with my deep appreciation for what you do and how you do it. As an MS suffer I know the chores and how hard it to do some makes some things are so simple the average that is normal as a real hard time understanding what needs as multiple sclerosis sufferers go through on a daily basis. Every one of us as a slightly different and unique form of multiple sclerosis which makes it impossible for doctors to create a same course of treatment.
    I have recently been diagnosed with secondar ophthalmologist y progressive MS and everything that goes along with this new diagnosis. First thing that I am fighting on a daily basis is major eyesight problems. I have been seeing a neuro ophthalmologist in order to try to control my current problems. I know that there is nothing that I can physically do to make my prognosis change all I can do is live with it and comfortably change the simple things that I am challenged with.
    Must admit that I am very proud of what you and your wife do to make your life and encouraging example for all of us MS sufferers. I look forward to reading this page as often as I can.
    It is my goals make myself available as an advocate for MS change needed within our society.
    Keep up the good work to do and you do so well.
    Glen Fauble

    • Richard M. Cohen November 11, 2014 at 9:08 pm #

      Glen-

      The road is tough. Please keep moving forward. All of us draw from each other.

      Best,
      R.

  14. Sandy November 12, 2014 at 9:06 am #

    Before I answer the question let me say that I love my Tysabri and I have seen improvement in my walking and so has my neuro. But I don’t consider it a risky behavior trying to hang onto myself.

    My answer to the question is – I went bear hunting. I have hunted for years with my husband and son. I have hunted deer, turkey, waterfowl, upland game birds, and other small game. With my walking issues and loss of arm strength I have reduced my hunting to just turkey. In Wisconsin you have to apply several years in a row before having your number drawn for the opportunity to buy a bear license. While waiting for my number to come up my disability increased to the point that hunting was going to be nearly impossible.

    When my number came up I was able to find a guide and his entourage that understood my situation and made it possible for me to hunt bear. I am happy to report that I was able to get into the woods and back out again. I was able to steady my rifle and shoot a nice black bear. The guys helped me field dress it and get it out to the truck. It was delicious!

    While it was not particularly risky…I killed it in one shot so there was no problem with it charging me…it was a very difficult hunt and took a few days to recover from. No regrets.

    Sandy

    • Richard November 12, 2014 at 8:44 pm #

      Congratulations.

      R.

  15. Elizabeth November 12, 2014 at 10:54 am #

    My desperation is creating a situation where I am grasping at straws on a low risk level. Kind of like playing the stock market but with hope for a small return and little investment.

    I’m applying for jobs but I have a true phobia/fear after my last boss blatantly harassing me due to my disability. I will go nuts if i’m not working but I may have to reinvent myself. My work includes 50% travel. It’s a strain.

    I am currently trying to untangle my web of symptoms. What is stress? What is MS? What is grief? How long until I feel human again? Will I feel human again? Where do I go when I lose my house?

    I am on Gilenya. Only since March so I don’t really know if it’s working. I was in a massive relapse when I started and some things have improved while others aren’t effectively managed. The blurry white screen with the little black letters and my throbbing left leg from spasticity remind me of that.

    After not sleeping for almost a week due to the cramping in my leg, I would go to great lengths to get rid of that. I just read that MJ is good for that.

    I had such a good initial response to low dose naltrexone that I would have bet that was going to be my saving grace. Now it seems to have lessened in its effectiveness. I guess IVMP again to see if this time it will get me through a few more months. Tysabri scares the crap out of me. I see all of the patients in the infusion room, opening their arm wide and saying “I need this.” I am not there yet.

    I have one goal right now. I want to have a good day. I don’t want to be sad, defeated, grieving (or at least forget it for a while), and I want comfort and support. I never thought that would be so hard to find.

    I don’t thrive on pity. In fact I hate it, but can I ask a question? Why is it that people with MS are thrown into the “pathetic, sick people category?” People with cancer or some other life threatening disease are seen as fighters, heroes, which they are. But while MS is life threatening, meaning it takes away your life right before your eyes, it’s not taken seriously except in our own parallel universe?”

    • MB November 12, 2014 at 6:19 pm #

      Excellent question, Elizabeth! In fact, that’s the million dollar question. I think I’ve always felt resentful that I’m viewed as pathetic, but I never really thought about the cancer (brave victim) comparison. Why is that?? Why am I pathetic because I have a chronic progressive disease as opposed to being brave for living with it with no relief on the horizon?

      I’m really angry about this now. Has anyone else asked themselves this question? It looks like this has the makings for a new post.

      • Hannah November 12, 2014 at 7:47 pm #

        Like…

        “The war on cancer” happened. Hence…warriors…against cancer. Everyone should get credit for what they battle, I think. The war on MS hasn’t happened yet. As far as I know. Someone who follows news/history can fill me in. Thanks.

      • Louise November 15, 2014 at 3:45 pm #

        Yes, I have thought about it. I responded to one of
        Richard’s earlier blogs where he said he felt embarrassed by some diminished ability that I sometimes feel that embarrassment but I sometimes feel like “let’s see you get up everyday and put your feet on the floor with this hanging over your head.” But don’t bother being angry – you’ll only get more pity in return. “She’s sick, disabled and angry” 🙂

    • Richard November 12, 2014 at 8:47 pm #

      It is also a mind game.
      R.

    • Richard November 16, 2014 at 12:03 pm #

      I do not believe we are our own category, though it does feel that way sometimes. Maybe we simply project how we see ourselves onto other people. Many of us have big self-esteem problems.

      Best,
      R.

    • Richard November 16, 2014 at 12:04 pm #

      Really, I do not believe we are our own category, though it does feel that way sometimes. Maybe we simply project how we see ourselves onto other people. Many of us have big self-esteem problems.

      Best,
      R.

      • Hannah November 16, 2014 at 1:13 pm #

        “Many of us have big self-esteem problems.”

        Someone find the origin of the blight.

  16. Mike J November 12, 2014 at 2:13 pm #

    Good topic- sad I do what my Dr’s say to do. I sometimes feel like I’m in an abusive relationship, where the victim always goes back for more . Maybe this time will be different, won’t hurt so much, won’t cost so much, won’t leave me feeling like I’d been rode hard and hung up wet! But the cycle continues, with my luck I’ll say no on the one thing that would’ve worked. But the chemo was hard, I have been on just about all of the MS drugs. I actually agreed to a spinal tap in a teaching hospital, not smart. I went to the Eye Hospital in Philly I think it’s called Wills or something? Everything we do is crazy because it’s a fight you can’t win. As far as crazy bucket list sh*t I pulled that is a growing list. Jumped from airplanes, swam with dolphins, got to meet you!! Yes you sat down with me and the “guys” from Hartford it was awesome. So I guess these days you could put taking a shower as a similar risk to parachuting. Danger is everywhere when the game is rigged. That’s what we are doing, trying to win some medical lottery without a ticket.
    Good luck although I think it’ll take more than luck.

    • Richard November 15, 2014 at 1:00 pm #

      I agree. Itwill takeresearchandprogress.

      BNest,
      R.

    • Richard November 15, 2014 at 1:03 pm #

      Yes. It will take hardwork, research and progress.

      Best,
      R.

  17. Nik November 12, 2014 at 10:08 pm #

    My only shot in the dark is I have turned down the medicine they keep telling me I need to starts ASAP. This post has been one of my favorites. I had been desperately wanted to ask what medicines everyone has tried or if you’d all think I’m crazy for defying my Drs by not starting any DMD. Richard that has been my one question I have wanted to ask you…..am I crazy? Two highly regarded Neurologists in NYC pushing the DMD drugs and me yelling “Hell no!”

    Maybe I’m still in denial. Maybe I’m a gambler. I’m just not sold on any of these drugs (except possibly weed 😉

    • Christopher November 15, 2014 at 6:28 am #

      @Nik

      Bad idea not to start on disease modifying medication. That is strange that you’ve seen two “highly regarded neurologists” but discarded their medical advice that is based on very sound medical knowledge. The drugs are meant to slow the progression of the disease… that’s it, period. There is no cure, and no stopping multiple sclerosis–at least not yet. There’s plenty of anecdotal evidence of this thing, or that thing, working incredibly well for some people. And that’s just it… the drugs and therapies don’t work for everyone, unfortunately, due to epigenetic differences from person to person. Thing is, you have been diagnosed with MS and now you know you have it. It isn’t going to go away… ever. MS doesn’t stop doing damage to the CNS, whether you notice it or not. So the only gamble is doing nothing while the damage accumulates. Research the different medications and find something that seems okay to you to start on–some are less harsh than others. If you’re hoping to brave it out, that’s a very bad idea. If you’re concerned that all the medications out there are bad for your body… so is MS, and it isn’t going away. There isn’t anything that’s completely benign. If it’s a worry that any of the drugs will cause damage and shorten your life… so will MS. It isn’t a matter of taking a gamble, or being “sold” on the drugs. The science is there and it’s pretty convincing. The drugs aren’t a gamble, they’re a hedge against getting worse.

      Look at it this way… your disease is not going away, like the flu. It’s also not like cancer, where it can potentially be cured by going into remission (different remission than MS type of ‘remission’). It’s like dying, slowly–it’s going to happen whether you want it to or not. We exercise, take vitamins and do other things doctors and science tells us helps slow the progression to death, right? So why wouldn’t you take something that slows the progression toward total disability? Are you crazy? Probably more like the rest of us, unsure and scared. Change is scary. Especially this kind of change.

      BTW, none of the medications hasten MS progression.

    • Richard November 15, 2014 at 1:05 pm #

      Trust your instincts.

      R.

      • Nik November 15, 2014 at 6:26 pm #

        Thanks. My instincts and research haven’t sold me on any of the DMDs. Btw this https://autoimmunesummit.com/l5d1q4/ has given me a weath of information.

    • Richard November 16, 2014 at 12:08 pm #

      Just trust your instincts. And stay on the weed.

      R.

      • Christopher November 18, 2014 at 1:46 am #

        @Nik…

        All those speakers at that summit are doctors presenting untested theories. Take it all with a grain of salt.

    • Sandy November 17, 2014 at 1:46 pm #

      One good side effect to the interferons that I experienced was that any cuts or scrapes healed in record time. AND I never had a cold…no not one for all the years I was on Betaseron and Rebif. I am always careful around germy zones but this was not just my handwashing.

      And as any MSer will tell you any cold or flu will cause you MS to rear its ugly head. So for me the interferons helped prevent the flares caused by cold and flu, etc.

      Once I transitioned to Tysabri I get colds again and also cuts on my hands take forever to heal. But the nasty side effects of fever and body aches after the shot are gone with the shot itself. Tysabri has minimal side effects pretty much just sleepiness and brain fog for a day after.

      I have a cold right now…second one this fall/winter. Oh and it has to be gone by the time my infusion comes around or I may not get it.

  18. Gala November 13, 2014 at 5:55 pm #

    On Facebook very useful site for group about HSCT, where one of moderators is George Goss as Vedrana mention. I had it almost 18 month ago in Moscow, but I am sadly not a good sample. I am still progressing, maybe in slower speed if it would be without. But there are a lot of very promising results. Maybe depends on MS history. But this is the best available option!

  19. Vikki Iannucci November 13, 2014 at 6:55 pm #

    Richard have you ever tried functional medicine? I think this is going to be my “shot in the dark”. I have tried all the dmd’s but my liver and lymphocite counts have suffered from 20 years of this. Sometimes it’s hard to keep going and pushing to find the right balance of what will work and what is more harmful to your body.

    • Richard November 16, 2014 at 12:10 pm #

      Never even heard of it. I am not too bright.

      R.

      • Christopher November 22, 2014 at 2:15 am #

        Go to Youtube and look up ‘Terry Wahls.’ She explains a little bit about functional medicine.

  20. Elizabeth November 14, 2014 at 2:29 pm #

    Went to neuro to address spasticity that won’t let me sleep and ended up feeling like I went with Alice down the rabbit hole spinning, whirling, grasping for hope and sanity. Now they want to put me on two studies to alleviate the medical expenses. Wait, what? Go off the Dmd I’m on immediately. Start the trek all over. I can’t handle this right now. Is this my shot in the dark? What the heck am I supposed to do?

    • MB November 14, 2014 at 3:13 pm #

      What are the studies?

      If you have complete trust in your doctor and open communication with him/her, what do you have to lose? (Except of course your sanity when they put you on an emotional roller coaster, but I digress.)

      • Elizabeth November 14, 2014 at 3:29 pm #

        Existing drug xeomin- (similar to botox) study hope to be effective and get approval to use off-label for lower limb spasticity. Pro-if it works, I get relief, that’s if I’m not on placebo. Con-if on placebo no relief and getting muscle injections where I am already in pain. Second study is a new DMD drug, not sure of all the details yet.
        Does anyone have complete trust in their doctor? I feel competence, but I also know they do a lot of studies so I sometimes wonder if they are more interested in that aspect of their practice. I know they are sincere in trying to assist me.
        What do I have to lose? Not being treated for the next few years if I am in fact on placebo and losing out on what may be my last opportunity to make a living before I’m too sick to even consider going back to work. Too many decisions in my life right now. It’s overwhelming.

    • Richard November 16, 2014 at 12:11 pm #

      WQhat you think is best.

      R.

  21. MB November 14, 2014 at 6:23 pm #

    I only asked about what if anything is there to lose because a study recently came out that Interferon beta was not effective in slowing down the progression of MS. So after four years of having flu-like symptoms every week to fend off the monster, comes to find out that I could have had 200 weekends of LIVING back and it would not have made a difference in the disease progression.

    We all weigh our choices. I guess you have to decide if the spasticity compromises the quality of your life to such an extent that it’s unbearable. If not, status quo might be your answer.

    I err on the side of trying everything because my disease course has been drastic in that I am unable to walk or use my arm. I still work full-time because I’m paid for my mind and not my physical prowess. MS is different for everyone and what we choose to live with is unique to each individual.

    I might have appeared flip when I said, “What have you got to lose?” but that’s how I approach the disease. I would never presume to tell anyone else what choices to make.

    • Elizabeth November 15, 2014 at 12:03 am #

      MB I did not consider your response flip. I greatly appreciated any ideas of how to look at the situation. I felt best when I was on Vit D and LDN only. I hear from the older crew that nothing really works. I hate to think that’s true. I still need some hope that something is going to work. Although I hear that if you can tolerate spasticity it helps with strength when walking. It just keeps me from sleeping. Give and take is the game I guess.

    • Nik November 15, 2014 at 6:30 pm #

      Great advice.

    • Richard November 16, 2014 at 12:14 pm #

      I agree. Would not presume to have an opinion.

      Best,
      R.

  22. Christopher November 15, 2014 at 7:21 am #

    When it comes to multiple sclerosis, everything is “a shot in the dark.” No one even knows what causes it. MS is a ‘condition,’ not really a disease itself. It’s just Latin for “many scars.” The underlying neurodegenerative disease could be one thing like a viral infection, or it could be multi-factorial. The biggest problem is that people live with a reality of disability, but are only given a whole host of hypotheticals to explain the reality. All of the drugs and therapies are really just the best tools available, based on fairly sound medical knowledge, to combat something that is still very elusive but definitely damaging. The neurological damage is real, and doesn’t ever stop. Everyone does have choices, and they should be personal. But, avoiding making decisions because it’s too scary or difficult is ultimately harmful.

    It’s like being on a sinking ship in the middle of the ocean… You could hope that the rescue helicopters get there in time, because you look down at a vast ocean that’s cold, dark and terrifying in it’s sheer immensity and uncertainty. But the longer you wait to put on a lifejacket and jump in the water to swim to the nearest liferaft, the more inevitably you’ll get stuck on that sinking ship, pulled under by calamitous forces and drown. A raft in the middle of an ocean is a big gamble, but it’s a much better one than being frozen by fear and uncertainty.

    Do your own research, be your own advocate and keep moving. MS never sleeps, and never lets up.

    • Em November 15, 2014 at 9:45 am #

      Well said…

    • Sandy November 15, 2014 at 10:03 am #

      Excellent description. I think we can all agree that while we meet others with MS their MS is never exactly like ours. Everyone is different and so everyone’s Rx and success with that Rx is different.

    • Elizabeth November 15, 2014 at 11:00 am #

      Christopher that was an immensely helpful analogy. Maybe I just need to decide if I choose the flotation device, the over crowded life boat, or put the life jacket on and hang on to the boat. 🙂

  23. Linda Lazarus November 16, 2014 at 9:09 am #

    “A raft in the middle of an ocean is a big gamble, but it’s a much better one than being frozen by fear and uncertainty.” Great thought.

    Started Betaseron when it first hit the market. (I won the national lottery…remember that?) 8 years. Steroids also during this time. Monthly for 4years.

    Then Avonex for a year.
    Then ready to try Novantrone but a malignant melanoma made IVIg a wiser choice. For the next 8 years I did 70g every other week. Took 8 hours but my MS loved it. I would get better during infusion. I called it my Popeye Spinach.

    Then IVIg stopped being effective. Like the steroids years earlier. So, my cancer being gone, I did the Novantrone. Again, my MS responded well and I completed the FDA allowed dose over two years.

    Now I do Rituximab and, once again, the benefit is obvious. When it wears off, I get worse. The same hold true for Ampyra. It works for me. When it starts to wear off my leg starts to drag. Every 12 hours.

    Walkaide and Segway help but really are novelties more than practical tools for me.

    So, 24 years after diagnosis, I have been lucky. I lost my career but have found other lives. Life has purpose.

  24. Vikki November 16, 2014 at 6:12 pm #

    Now that Lemtrada has been approved in the US for MS, there is a new “shot in the dark” to consider. Does anyone know anything about this new option from personal experience?

  25. Melissa January 4, 2015 at 8:11 am #

    When I was first diagnosed I was given Rebif, I was 20 yrs old and didn’t like the idea of shots, I took that for over two years and I was just getting worse… Tysabri was made available and I felt great after being infused, but that was short-lived because it got pulled from the market. I was then back to Rebif which didn’t seem to work.. my Neuro and I decided to try Betaseron, another dmd that did nothing…. I was excited when Tysabri was reintroduced…I have been using it for a little over 8 years now. I feel the benefits outweigh the risks… I am JCV positive so I get regular bloodwork to check my index level. I also have infusions every 6 weeks now instead of 4… I have MRIs before every infusion so my Nuero can check for any changes…I have been taking Ampyra for a few years now.
    I ended up with a cold/flu that lasted over a month.. I am feeling the Multiple Sclerosis now… having weakness and numbness along with uncontrollable bouts of shaking on my right side… so my infusion nurse and Neuro want me to try Acthar Gel injections for 5 days after IV steroids didn’t seem to do anything…
    So back to shots for 5 days.. does anyone have experience with Acthar Injections?? I am nervous to start…