My Unique Primary Progressive MS Diagnosis

My Unique Primary Progressive MS Diagnosis

Faith of the Mustard Seed

I have lived with the diagnosis of primary progressive multiple sclerosis (PPMS) for almost eight years. For many years prior to that diagnosis, I was confused by what could be causing my abnormal gait, extreme fatigue, blurred vision, and trouble concentrating. During that time, I completed many diagnostic tests, dealt with three baffled neurologists, and lived in an almost constant state of frustration.

I was perplexed by what was happening to me. I was stressed to know that something was wrong despite nothing showing up as abnormal on my test results. Then, at the University of Washington in 2010, an extra sensitive MRI discovered many lesions on my brain and spine.

One of the more perplexing pieces of this PPMS puzzle is that my brain lesions are not the typical ones seen with multiple sclerosis. They are different than the ones on my spine. To date, no doctor has been able to tell me why they are different, or what type of lesions they are. I have seen many neurologists over the years in my attempt to find a successful PPMS treatment and gain more insight into my condition. I am still searching for answers.

As for treatment, many medicines were discussed, always with a disclaimer that the data on the medications’ potential for slowing PPMS was discouraging. All had side effects, and considering I am a “lightweight” with medicines, I declined the treatments.

I try to eat a healthy diet and exercise regularly, but I am not consistent with either. I was on the high-dose biotin protocol for one year, from March 2015 to March 2016. I did see results at first: Pain in my spine disappeared, and I appeared to have more energy. But, as I continued on the biotin, I felt my walking was getting worse, so I stopped. But I am debating restarting the protocol even though my walking has continued to decline.

I was excited to ask my doctor about the newly available Ocrevus (ocrelizumab). But he said that at my age (61), they would only allow me to be on it for five years. I question if it would be advantageous to me, considering the side effects. I am still contemplating that, and I will discuss it further with my new neurologist.

I have seen many neurologists over the last 10 years. It appears that if I am not on a treatment, they don’t have much to say to me. At times, I feel like a lost cause. I have read on the internet that many people are happy with Ocrevus and the results they are seeing. While my doctors’ opinion matters most, I would really like to hear from those who have been on the Ocrevus treatment plan for PPMS. What has your experience with it been like?

***

Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.

106 comments

  1. Sid says:

    Thanks for sharing my brother. I was diagnosed in October 17 w PPMS, and Started taking Ocrevous in November. I became a grandfather in September diagnosed with a brain tumor in August, turned 50 in November and this news hit me like a ton of bricks. So I was glad to hear your perspective as you have had to deal with this for quit some time. I am still coming to gripps with the shock of the diagnosis and have bad days and not so bad days. It is consoling knowing whats going on with my body and I am learning and committed to grab this Bull by the horns and win.

    • Debi Wilson says:

      Sorry for all you are going through Sid, but, it seems you have a great attitude! Congratulations on becoming
      a Grandfather and thanks for sharing your story, best wishes! Debi

  2. Rusty Patterson says:

    As part of the trial of ocrelizumab for PPMS..I think it was a good thing, not great. MS still sucks.

    My future plans are to try new drugs(siponimod) that were trialed for SPMS..I thought my early symptoms were due to lifelong athletic injuries in college sports.

  3. Kevin Rhodes says:

    I am 65, and had a similar path to my PPMS diagnosis five years ago. I started Ocrevus last year, and also take Ampyra. No apparent impact from the former, the latter definitely seems to give me more energy, although it hasn’t changed my walking, which is its principal purpose. I too am a pharma “lightweight.” My main “treatments” are exercise, diet, and what I’ll call “mental conditioning” — such as athletes use. I pursue them all full out, and they are my lifeline.

  4. Pat Kimura says:

    I was diagnosed in 2001 with MS At age 60 although my only symptoms were a very itchy scalp and an itchy ear! MRI scans showed just a few brain lesions, possibly not active, and a few cervical lesions. PPMS was not mentioned at that time and I’m not sure if any of the neurologists at the time were fully aware of the different types/categories of MS. I was told that perhaps it was benign MS. There were no appropriate treatments for me then so I took the advice of an MS group in the UK and that was to work with your primary care physician and treat the symptoms, not the disease.
    I took that to heart, ditched the narrow-minded, dismissive neurologists (you’ve all had your share of those, I am sure!), and started complementary therapies such as yoga, acupuncture, massage and chiropractic with great success. I studied the national MS sites in Canada, Australia, Great Britain and America. Sad to say, the American sites were and are far less progressive in research and new discoveries.
    I have learned a lot over the years and have found the journey to be exciting. My meds are mainly vitamin based with addition of LDN 4.5 and Padma basic (over 25 published trials showing that it aids mobility). I urge you all to never stop studying and finding out new information.
    Now in my seventies, my worst symptom is fatigue, usually in the evenings, and a balance problem but nothing I can’t live with. Yoga and the other alternatives continue to help and I have a good life but have to avoid the heat but that can be helped. Being my own advocate and owning my MS works for me and I like to feel that I can be in control without being talked down to by any doctors.

    • Carmel Clarke says:

      Taking similar approach! Irish am 65 years old. I Also incorporate Bio magnetics and holistic massage and therapeutic yoga….Having
      Trigeminal neuralgia has stopped me swimming… believe singing would be helpful there.

    • Hi Pat –

      Thank you so much for your words. My MS story is very similiar to yours. I was diagnosed in 2006 with PPMS. I was 45. Very minimal lesions. They could not figure out what was wrong with me. I had no “classic symptoms” I just did not feel right. I was told at that time there was nothing I could take as medication. So I researched, changed my diet and started yoga. I has helped me maintain myself for almost 12 years and now they’ve started me on Ocrevus which I am hopeful. I started taking high dose Biotin which I feel is staring to give me even more energy. I take a slew of vitamins but am curious to know about the Padma basic and LDN 4.5. Can you tell me what vitamins add these and your experience with them please. I am starting to have mobility issues (partly because of knee surgery that aggravated the MS) and really can’t walk for long distances. I need to correct this. Thank you again.

  5. Resa hwayoung Song says:

    Hi, I have primary or secondary ms. I had it for 9 yrs. Im 37, I was diagnosed at 29. I missed my 30s because of this dreaded disease. My first symptom was was that I was seeing doubles and then became optical neuritis. I still have it, now, I can’t even walk!I tried everything and it did not help a bit, my last treatment is oculizamb, I have not stated yet but I’m hopeful. Thank you so much for sharing your story, it let’s me know that I’m not alone.

    • Karen Junqueira says:

      Dear Resa, I can relate to what you say. I was diagnosed at 33 and now, at 43, I’m without a job and completely dependent on my husband. Sometimes I’d rather just disappear.
      Knowing you’re not alone is some consolation, although you still have to carry the load on your own.

  6. Judi Webster says:

    I just had my second 1/2 dose and if you’d to know, I feel worse than ever. I believe that since 2015 I have been PPMS and Tysabri failed me and my brain, neck, and spinal lesions changed to DEEP demylenating. Since that second half dose last week, I have had 3 major falls, more severe fatigue, and the general malaise is puzzling. I am trying to remain positive but I am not sure why this is happening. It is not the way I would have predicted I would have felt but I will remain positive. I am not ready to give up. I am just not sure why the change in how my MRI was read or why there was a rapid change in the progression from a May 2017 MRI to a December 2017 MRI. I have always used a 3T MRI machine, they may have been recalibrated before I had that December 2017 MRI?

    • Debi Wilson says:

      Hi Judi, I am sorry to hear of your bad experience, I hope you feel better soon! Thanks for sharing and best wishes! Debi

  7. Marina says:

    I am 66 yrs old & have PPMS. I was diagnosed in 2007 & have had several neurologists in this time. I am seeing my 5th neurologist at Swedish MS Center in Seattle. He got me approved for the Ocrevus treatment. I’ve had 2 full treatments & I believe it has helped me a lot. I may not move better but I do feel a lot better & I do more because of that. I do not get as tired as I did before & after the infusion I feel almost normal. With this last infusion I felt pretty good for about 6 weeks. I’m looking forward to my next infusion this summer. It won’t cure the PPMS but it can slow the progression & I believe that may be working for me. It’s still too early to say for sure. I have my first MRI this summer to see if it has slowed the lesions growth.

    • Elle Smith says:

      The predecessor of Ocrevus was more successful but the patent ran out in 2015 and its only approved as a an MS treatment in Sweden. Otherwise it’s just a treatment protocol for Rheuma. I would advise discuss further treatment options if Ocrevus isn’t that effective. I have PPMS and had 2 Ocrevus sessions so far. Despite felling better overall, there is no mobility improvement.

  8. Chrissy Zamoyska says:

    I was diagnosed with PPMS in 2010 at the age of 51. My symptoms were numbness in my left arm and feet plus tiredness and continuous smarting pain in my joints. The diagnosis took forever and was confirmed finally by a lumbar puncture (not my favourite procedure!). My neurologist was very honest with me about treatments and basically told me he could only treatment my symptoms and not the disease. Here in England we have specialist MS nurses and they are wonderfully, supportive and helpful, if even just as a sounding board every now and again. I was the last person accepted onto the Ocrevus double blind trial over here (which has now gone open label) and am coming up to my last treatment this June. I have had no side affects from the infusions (I have been on Ocrevus not placebo) and all the doctors are very pleased with the outcomes. I know my MS has deteriorated such that I cannot walk as far as I used to and my dexterity particularly on my left side leaves much to be desired but I still function normally most of the time and manage to carry on working part time. It is hard to know if the infusions have slowed down my progression as there is nothing to measure it against but I am hopeful that that is the case. I believe a positive attitude helps and a supportive family. Good luck with your treatment.

    • Debi Wilson says:

      That is all very encouraging results Chrissy! Thank-you for sharing your story and I wish you continued success! Debi

  9. IRA COHEN says:

    I was diagnosed in 2016 with PPMS due to symptoms of balance issues and gait problems. Brain and spine MRIs showed lesions. Ocrevus was in trials that I couldn’t get in because the age restrictions limited it to people under 55. In May 2017 after FDA approval I was able to start on Ocrevus. I had the second dose in November I recently had another set of MRIs and no lesions are apparent. I also take Ampyra. Walking is still affected but I exercise and do muscle stimulation therapy, Arpwave. Starting more PT shortly. Keep trying…

  10. Jacque says:

    I have had only the initial 2 part dose of Ocrevus. I tolerated it very well, but probably too early to tell. I have had some increased strength/improved walking but in December I also started consistently exercising in the MS gym. I have learned more about MS in this facebook page than in my previous 17 years since diagnosis.

    • Debi Wilson says:

      Hi Jacque. I also love the MS gym! Your story and regimen are inspiring! Thanks for sharing, wishing you the best and continued success! Debi

  11. Lisa Caudill says:

    I was diagnosed with MS Christmas Eve 2012, but it it wasn’t until 2016 (and a new neurologist) that I had a type of MS diagnosis. It was PPMS. The progression hadn’t been horrible and they suggested Ocrevus. I am due for my 2nd full infusion in May and it has slowed the progression. I’m pleased with the results so far and so is my neurologist. I had zero side effects and was surprised because, I too, am a pharma lightweight. Good luck to you all and keep your heads and spirits up. A good, positive attitude helps immensely, I have found.

  12. Paul says:

    Debi,
    Thanks for sharing. I am also 61, diagnosed with Relapsing remitting ms 5 years ago. Funny thing, never had a relapse event. A year ago went to a 4 day MS Can Do program in Atlanta and while talking to a neurologist there, the light bulb went off and I realized I most likely had progressive. I have been on avonex (2yrs) tysabri (2 yrs) and then Gilenya. Had to take a break from Gilenya cause my immune system was getting too low. It was then I decided to try Ocrevus. Completed 1st regiment in January. Recent mri shows no increase in lesion activity, although I have been stable for some time in regards to lesions. My walking, right side, has not been stable. My gait is getting worse. But I think some of it is due to me doing too much. I still work full time and care for my wife with a chronic illness for 20 yrs. But I am committed to start taking care of myself better. As many of the redpondees to your blog state, exercise is key, as well as sleep and rest.
    I also take ampyra and I can’t go without it. I walk the dog each morning for a mile and know if I miss a dose.
    As for Ocrevus, I was not aware of the 5 year limit you mention but I am hopeful there will be new meds or even better, s cure!!! Always hopeful. I don’t see any huge difference since starting Ocrevus, but it has only been a couple months.
    All the best with your journey and everyone else who replyed. God bless you.
    Paul
    ( sorry I was so wordy. I still have not disclosed my condition except to family and a few close friends, so when I have a chance to talk, I talk)

    • Debi Wilson says:

      Thank-you for sharing Paul! You are dealing with a lot, but it sounds like you remain positive and proactive! Best wishes to you! Debi

  13. Cindy says:

    I am almost 65 years old and have had PPMS for 26 years. Even though there weren’t any medications for PPMS my neurologist at that time felt that I should be on some sort of MS medication. Originally I was on Avonex, then he added Copaxone years later and I was on a double theropy. Now I am on just the Copaxone. I am in a wheelchair with very little walking or mobility. My original doctor has retired and my new doctor feels as though I should stay on Copaxone, it is a very safe medication compared to some others. I asked him about the Ocrevus and he mentioned my age and that it hasn’t been tested on anyone older than 50. His opinion is that the possibility of PML is only a matter of time before someone on that medication develops it. I am not willing to risk it at this time. I have never had any reactions to either Avonex or Copaxone and I waited a few years to begin taking the medication in fear of the side effects, but PML is not something I want to risk. Just praying they come out with something for PPMS with little side effects or risks.

    • Debi Wilson says:

      Thank-you Cindy! I appreciate you sharing your story and concerns, I have them too. I am encouraged by all the comments shared on this column! best wishes, Debi

    • FB says:

      Re “it hasn’t been tested on anyone older than 50” – you have been given false information – the clinical trials mostly had a cut-off age of 55 years old. Trial results have shown that Ocrelizumab was generally not as effective in people over 50yo, but this older age cohort was represented in the trials.

      However, I must say I sort of share your concerns over PML – the newer oral drugs were going to “fix everything”, and while the PML rates to date are extremely low, there are cases occurring, as well as a few other problems seem to be cropping up with having a drastically suppressed immune system. It’s the same old routine of the more effective the drug, the higher the risks.

      In some ways, the greater choices available makes making decisions even harder now. And as someone with PPMS, I have absolutely no idea what I’m going to do if/when Ocrelizumab become available where I live.

  14. Keith Layton says:

    I Was diagnosed at age 56, and am now 66. I had similar angst regarding what was going on, since about age 43 up, until FINALLY being diagnosed.
    Enough of that. I have had two Ocrevus infusions. I feel like I am holding the line on my PPMS. My neurologist says “forever” as far as being on the Ocrevus, and I will follow that path. I was on Beta Seron for 5 years circa 2006 to 2011- don’t know why- I felt like it was a ruse- but I had no side effects to that. Ocrevus does heighten the risk of infection, and I have had two UTI’s during my Ocrevius time, but it will not dissuade me from taking Ocrevus ongoing. I basically can only walk with a walker and motivate via a Power wheel chair most of the time. I am thankfully retired as of yesterday.

  15. Gladys Torres says:

    I am 63 years woman, diagnosed in 2004. From the beginning my MRI’s showed many lessons only in the brain.
    First med. was Avonex for 2 1/2 years but was removed because my blond white cells were severe afected. Then I uses Copaxone for a short time and was removed. I used only 2 Tysabris infussions. Then I decided no more med. because I was feeling well and as some of you said, I am a
    “Light-medication” person. I had been without med. for years. Two months ago I had a severe relapse that affected balance, coordination and walking. I was hospitalzed and treated with Steroids. My neurologist put me in Copaxone. It was very hard. Thanks to God, he gave me the strenght to go forward and to have faith on him.
    I never talk about this. I do not speak English, please excuse me mistakes.
    But I need to express myself.

    • Debi Wilson says:

      You express yourself very well Gladys! It is my faith in God that gets me through this disease as well! I’m sorry you are having a hard time, thank-you for sharing! Best to you, Debi

  16. Diane says:

    I was diagnosed in 2010 at the age of 49. I have been seen by 5 different Neurologist. None of which believe my lesions are typical MS lesions. Why? There are 30 of them but not in the right part of the brain. My symptoms however, are true MS symptoms. So I walk around wondering…is this MS or something else. Currently none of them will treat my MS. We’re just playing with my meds to help with pain, fatigue, muscle spasms and insomnia. These are 5 doctors at top medical facilities only taking care of MS patients. I am so frustrated because no can help me!

    • Debi Wilson says:

      I totally understand Diane! It is very frustrating! From reading comments on this post there are success stories, we are all in this together! Thank-you for sharing your story! Best wishes to you! Debi

  17. Joan Woodward says:

    Debi, I am turning 61 in April and was diagnosed with PPMS September 2014. I took Betaseron injections till Jan 2017. I was in the ibudilast clinical trial but decided that either I was on placebo, or it just didn’t work. In February 2016 I had adipose tissue stem cell treatment which gave me a full 10 months of relief from fatigue (my worst symptom of PPMS)I am so tempted to do again! I have been on Ocrevus since May 6 (2 infusions in May, another in November, and I am scheduled again in May. I am not doing as well as I was after the stem cells, but my progression is still what I would consider slow. My main lesion is on the top of my brain stem and effects my right side. I still walk but no distance without walking sticks. Biggest complaint is fatigue. Lots of success with liposomal glutathione (Readisorb) Essential oils help as well. I also am not aware of the 5 yr limit on Ocrevus. I also am a pharma light weight and remain drug free except for the infusions. Just want you to know-you are not alone!

    • Debi Wilson says:

      Thank-you Joan! That is great information, it inspires me that you are so pro-active and have had success! Thank-you! Debi

  18. Ruth says:

    Debi –
    Thanks for posting this – I am 71 years old and thinking about Ocrevus, although it hasn’t been recommended highly by my neurologist. I have had poor results with Rebif and Copaxone – in the latter case, admission to the hospital with “sepsis.” That supported the diagnosis of PPMS – also never had anything resembling relapses.

  19. Laurence says:

    I’m writing this for my wife Judy she was diagnosed in 1987 so we have been dealing with this for a while a slow crawl down hill. Saw very few neurologist over the years last one about 2000. In October of 1998 she lost control of her legs and hasn’t walked since. In April of 2006 had a ruptured appendix and brain fog seemed to start which got worse over time. In 2010 after a UTI infection she lost the use of her left hand and both arms so couldn’t feed herself. In June of 2015 we tried a new supplement called Niagen which helped a lot with her brain fog we can now play some computer games that she can take part in (hidden object games). In September of 2016 we added biotin and notice that she now she could move her arms again not much but considering where we’re at it was exciting. We know not to expect miracles from the medications it’s taken 30 years to get to this point and nerve repairs will take time. As for other treatments and medication this started for us way before all the inferon and other things. Judy was always one step farther down the road than the criteria allowed for the treatment so no help from the big pharms.

  20. Greg Gladstone says:

    Hi Debi,
    I’m a 56 year old male and I was diagnosed with RRMS
    5 years ago and was on Copaxone during that time. Over the last six months I’ve progressively declined especially my cognitive function, fatigue and spasticity. My ability to process what I was thinking was impaired. I was asked to take an LOA from my job. I saw my doctor and since I hadn’t had a relapse in approximately four years he determined that I now had primary progressive MS. I had my first 1/2 of the 1st dose of Ocrevus 1 week ago today. The next 1/2 is next Tuesday. Since the 3rd day of my Ocrevus infusion my thought process has been better and I’ve had minimal fatigue that was tolerable. With the improvement that I’ve seen, I’m in anticipation of next Tuesday like I was as a child waiting for Christmas. Not everyone will see improvement as quickly as I did. At least I now have some hope as opposed to the downhill spiral of symptoms worsening. I wish you the best!!!

  21. Scot says:

    I don’t understand. Why isn’t the big question about the understating of the results from the 106 people in the clinical trials for HSCT in the UK. Compared to any DMT the results use words such as curative. Nothing else comes close. Then the next question is,”how do they know this doesn’t work for primary progressive? The people with primary progressive going abroad say it works and there are now several hundreds and growing. I would tend to take their word for more than even the clinical trials that of been going on for more than a decade here in the states, and they still can’t figure out if it works. Really! Meanwhile They don’t show any evidence of even trying PPMS. I believe we are on the precipice of a paradigm shift in the treatment of multiple sclerosis, regardless of what type you have.
    Maybe it’s time to consider, If the truth sets you free, it might be HSCT?

  22. Dave says:

    I was diagnosed with PPMS in January, 2014, thanks to really good MRI at Cleveland Clinic. Experienced very similar frustrations finding an answer. Am now 58. Started Wahl’s protocol diet in 2013 and have been consistent since. I think that is the most help. Have had Solumedrol blasts and tried high-dose Biotin for about 4 months, but neither seemed to help much. Have had 2 rounds of Ocrevus infusions now, and believe it has made symptoms worse. As of now, am not planning to continue round 3 in June. Most difficult condition is leg strength, but also have bladder/bowel challenges. Many other common PPMS symptoms have fortunately stayed away at this point. That said, it is a shame “personalized medicine” has not progressed further – as who knows what will fix each of us. But my experience with Ocvrevus was not positive (even though I had zero side effects during and around infusion). Hope that helps! Good luck stopping progression.

  23. cynthia says:

    I had RRMS that has become SPMS …..I have never taken any of the meds…..except for Fampyra , which I have been taking for 6 years. It has helped me walk better even though I now have to walk with a rollator. I began medical marijuana [oil] last December , and it is wonderful for getting a good night’s sleep….something I hadn’t had in years. It has also helped with bladder incontinence , pain , leg cramps , and numbness. I haven’t seen my neurologist for 8 or 9 years…but I go to a physiatrist once a year….he has given me more practical help than I ever got from neurologists.
    I do believe that meditation on the word of God, along with prayer has very positive results.
    I always look forward to your posts , Debi

  24. Jacklynn says:

    I was diagnosed with PPMS in 2014. Being a Physical Therapist, I knew way before the MRI confirmed it. Do not give up. I’ve had a years worth of Ocrevus with no negatives. I realize that only 25% will see positive results. If your insurance covers the cost, please go for it. This new med will not fix the damage already done, but it could keep things from getting worse. Start now. If you can. I can still walk. I work in outpatient PT lymphedema. Can’t drive. Which sucks. But I’ve hired a reliable driver who gets me to and from work safely. I have a very supportive husband who is my human cane when walking long distances. Going to Jamaica in late April. Living the dream, with some modifications. Hang in there.

    • Debi Wilson says:

      Thank-you Jacklyn for your positive and encouraging words! Have a great trip it, sounds fantastic! Best to you! Debi

  25. Doug says:

    Hi Debi, Thanks for sharing your PPMS journey in your column.

    I have PPMS, diagnosed in August 2017. Have had symptoms for 3-4 years. Just had second full round of Ocrevus with no side effects. However my walking/gait is still declining. Will probably stay on it in hopes that it is slowing progression. I hope it works for you.

    Been on high dose Biotin, ALA and 10k iu of Vitamin D for 4 months. Also exercising regularly. I have noticed improved cognition and increased energy but not sure what is helping this.

  26. Lee Hudelson says:

    Pretty interesting stuff here. I am PPMS diagnosed in 2007 still ambulatory but having incredible spasticity and pain. Started Ocrevus last Sept and again a couple weeks ago. I don’t notice any difference except this stiffness and pain. Seems like the overall results anecdotally here point to not much benefit from Ocrevus. Probably my last infusion depending on future results but have been researching stem cell treatments.
    Thanks for sharing your stories.
    HUD

    • Debi Wilson says:

      I agree Lee, everyone’s story is very interesting and helpful! Thank you for sharing yours as well. I wish you the best, Debi

  27. Cindy Gere says:

    I started having problems when I was 27 yrs old living in Co. Extreme dizziness, legs would give out, my eyes went crossed for over a year and the left side of my face did not work. All the MRI’s and a list of test done came back Negative. The doctors said it was all in my head and I was just stressed. How could I make my eyes crossed and the left side of my face not work? I moved to Boise, ID. and in 1997 at 35 yrs old I was diagnosed with MS. I was so scared and thought my life was over. With the support of my hasband and family I made it through each day the best I could. I was treated with Avonex shots once a week. The side effects were bad for 2 days and I did my shots on Friday so I had the weekend to recover and was able to work during the week. I now take Gilenya, a pill, once a day with NO side effects at all. Not to say that there are no side effects from the medication, just not for me. For me to finally be okay with My MS I had to except it and own it. I am now 56 yrs old and though it took a long time to come to grips with my diagnosis of MS and yes it still scares me to death but I am so thankful and grateful that I can live a semi normal Llfe. I have MS but MS doesn’t have me. We have come a long way with all the new medication to treat the different types of MS. What works for one may not work for you. But please never give up on yourself because your worth fighting for. So keep trying until you find what works for you.

  28. Kristin Hardy says:

    Hey Debi, hugs on your frustrations. I was diagnosed in 2002 with what quickly became apparent was PPMS. Tried crabs drugs, Cytoxan, CellCept before finally going on rituximab, which is nearly identical ocrelizumab. I have been getting it annually since 2006. So far, knock wood, no issues. Never had any issues with the infusions, outside of getting loopy with the Benadryl. seem to get a small bounce a month or two after the infusion. For the most part, it seems to stabilize me, then slow progression. As the B cells start to normalize, progression speeds up until it is like falling off a cliff. Other than that, I spend several hours a day doing estim, try to follow the Wahls protocol. PT rocks. Something I am repeatedly reminded of is that a significant portion of progression is muscle atrophy – the harder I work on e-stim and PT, the more function I get.

      • Kristin Hardy says:

        Oh, and definitely try Ampyra, if you have not already. Makes hands work better, feet work better, easier to sit up straight, the list is endless. They push it for improved walking but potassium channels don’t know which nerves transmit signals in your legs and which transmit elsewhere. It improves everything. I have also had very good results with co-Q 10 (improve peripheral function) and Alpha lipoic acid (better muscle recruitment, less spasticity.

        • Debbie Wade says:

          I was diagnosed in 2013 at 46. About 2 years later I started on Ampyra. Although it definitely helped with my mobility, this past February I had a seizure at work, and it was decided it was the Ampyra that caused it. My nuerologist stopped the Amoyra immediately. I didn’t know seizures were a side effect until this happened.

    • Elle Smith says:

      Hello, I was wondering how you managed to get on Rituximab. From what I read and hear it’s the more effective predecessor of Ocrevus, but it was kept as a Rheuma treatment (not going to go into details as to why)

      • Kristin Hardy says:

        I started on it before there were any alternatives for PPMS. The insurance companies usually reject first time out of the gate and then approve it after a peer to peer with my neurologist. It got easier after a clinical trial demonstrated that a small subgroup of patients with PPMS benefited from rituximab. My insurance company, anyway, approves it for treatment of RRMS out right –, so if you are RRMS, call your customer service department and see if they will cover it. It is actually cheaper than ocrelizumab. Almost the same formulation – it is an immuno treatment based on mouse antibodies whereas ocrelizumab is a humanized monoclonal antibody. Kissing cousins. Fun fact: part of the success for the ocrelizumab trial was based on the fact that they preferentially seeded the trial with patients matching that aforementioned profile – at a rate that far exceeded their occurrence in gen pop. Oh, and be sure to get tested for JC antibodies before even considering either drug.

  29. Scotty says:

    I like Kristen H. have been on Rituximab, now into my 4th year. Basically same drug as Ocrelizumab, but with long history for cancer and RA treatment. Biggest difference being cost $65,000 vs $10,000 for drug company. Since patent expired on Rituxan, it is not even discussed as an option for MS by most, however, I did find one study in EU. You should/may have read the info at the following links to help you form your own opinion.
    https://multiplesclerosisnewstoday.com/2017/04/19/ocrevus-and-rituxan-and-differences-neurologists-respond-to-ms-patients-concerns/

    https://www.forbes.com/sites/elliekincaid/2018/01/08/rituxan-outperforms-a-half-dozen-multiple-sclerosis-therapies-in-study/#7d0a0e904a59

    http://www.multipleexperiences.org/2017/01/12/ocrelizumab-versus-rituximab-rituxan/

    http://www.multipleexperiences.org/2017/01/12/ocrelizumab-versus-rituximab-rituxan/#comment-695

    https://www.bloomberg.com/news/articles/2017-08-23/how-roche-tweaked-an-aging-drug-to-keep-profits-rolling-in

    https://www.medpagetoday.com/meetingcoverage/ectrims/54060

    https://medicalxpress.com/news/2017-03-expert-discusses-drug-multiple-sclerosis.html

    I do have a long history with MS, RRMS to SPMS, 30 years, 3 different injectables before going on Rituxan. Both my current neurologist of 15 years and I believe it is working well, very slight progression since going on Rituxan. I am now 60, retired and still walk with cane, hike a few miles with trekking poles, drive, and travel. It is not uncommon for doctors to get approval for off label use of drugs like Rituxan for MS. Sad that in our society today, that what is most important is money and not people’s health!

    Good luck,
    Scott

    • Debi Wilson says:

      Thank-you Scotty for sharing your story and drug info! You sound active, I am glad Rituxan is working well for you! Best to you, Debi

  30. Jean says:

    I was diagnosed with PPMS a year ago after many years of confusing symptoms. I also have RA. I am a drug lightweight as well; many times the medications treat one thing, but cause harm/issues with others. I saw a report that Orcevus trials shows a small increase in risk for breast cancer. Since that risk runs higher in our family (my mom tested neg for the BRACA gene.), I asked my neurologist about it. He researched it and said there is an increased risk because the treatment targets the same B cells that protect the body from certain types of cancer. For now, I’ve decided its not worth the risk of adding cancer to the mix. He suggested that regular exams would catch anything. I’d rather avoid cancer altogether, given the choice.

  31. Ed says:

    Debi thank you very much for posting.
    I am a newbie to MS and still getting my arms around the challenges we are all facing. Diagnosed 3/2017 with PPMS at 49, my wife says “I was the poster child of PPMS” after she read the characteristic on National MS Society website. As I have become more educated on the topic I now know that back in the early 2000s is when I started with blurred vision then numbness/tingling in both hands then growing fatigue as time moved on til 2013 right drop leg/balance….etc.
    I am like you and several others I have seen here, not prone to take meds. I have heard a lot of about Orcevus and know several PPMSers who are taking it, so far no issues I have heard about. My neurologist is a MS specialist, rather recommends Rituxan (same comments as Scotty) than Orcevus, if I were to take something but he is not pushing either. Still says there is not sizeable % showing positive resolutes. I have heard that many of the people here are taking it to keep things from progressing.
    Thankfully I am still mobile and use only walking sticks when taking long walks like a hike(ha, no more than 1.5miles), but I need to move slower as balance is not good and the fatigue giant is always with me. I have noticed that my energy level has dropped within the last year so I know for me the PPMS is progressing which is making me think about the med subject more so this has been a great topic of review.

    I too am encouraged that this is not my final home and look forward to a new body, God’s Blessings in the journey ahead.

    Ed

    • Debi Wilson says:

      Hi Ed,
      Thank-you for your kind comments and sharing your story!
      I hope you will join us at the recently created MS News Today Forums, you can ask questions and connect with others with MS. Wishing you the best! Debi

  32. Nancy Ward says:

    Hi Debi,
    It is good to hear others stories, I too was misdiagnosed for almost 25 years. I had scoliosis when I was a child, so slight doctors did nothing. When I was in my early 30’s my spine started curving rapidly, so Doctors just assumed it was my scoliosis even though I had many other systems. I had back surgery when I was in my mid 40’s(a rod and in which they caused nerve damage during surgery in my stomach area). I was frustrated and felt crazy that no one would listen to me about the back pain, drop foot, extreme fatigue and leading up to depression. I was finally diagnosed at age 58 and was told I didn’t need the surgery, my problem was MS-my lesions are all on my spine.
    I just started Ocrevus last December, so I only had my first 2 infusions-can’t say if it makes a difference.
    I was a very active healthy person my whole life, so my life has changed a lot. I still do strength training and yoga and try to eat healthy for the most part. I do have to say thank GOD for my family and friends that always make sure I don’t give up.
    I always think things could be worse!
    God Bless,
    Nancy

  33. searching for a diagnosis with multiple neurologists across 2 continents over 5 years, diagnosed in Barcelona in 2016, turned the tale into an Edinburgh Fringe show in 2017 called the ‘Pre-Disposed’ which involved a bunch of comics off the Fringe, such as the great Eddie Izzard, directly after the Fringe I was bumped up the 2 year waiting list to go to Russia for HSCT, sought to raise funds and went and received a transplant with the amazing Dr Federenko on December 5th 2017., the most impressive medical professional I have ever met (a haemotologist!! first thing he tells you ).
    I only ever took high doses of Vit D and 6 months post transplant, hair is back last of the chemo effects have gone, symptoms like bladder and fatigue particularly are resolved.
    The damage done in terms of mobility range is still the damage done but I get stronger and endurance grows everyday and I am completely drug free except for the Vit D which I keep going I live in the diabolical climate of ireland… the only negative thing in my head.
    I am currently writing the sequel to my Edinburgh show for this August 2018 called ‘The Post-Disposed’ which will tour after possibly coming to a theatre or cinema near you. Follow the story at http://www.stopmyppms.com

  34. Debbie Lawrence says:

    I was diagnosed 12 years ago. After going through multiple tests and I think 4 MRI’s confirmed brain lesions my Neurologist confirmed what I refused to believe. I had also gone to my chiropractor knowing the symptoms could be back probs which I had and the symptoms I was experiencing a pinched nerve. Sounds reasonable right? Well when I told my Neurologist I did.not believe him and he told me I needed to start treatment. I refused and walked out. The symptoms I had experienced eventually went away except for the increase of pain in my back. This happened pretty slowly in the last 12 years but, I have been experiencing some weird sensations, vision problems, chronic back pain and the numbness and tingling and weakness mainly in my right leg and foot. I went to my doctor that referred me to a neurologist that did a few tests, watch me walk and said that I was properly diagnosed 12 years ago. He ordered bloodwork and MRI’s and the results didnt lie. I have done alot of research recently and there is so much more information available now than in 2006. The treatments and medications still have horrible side effects yet when I read the updates or stories I get notified of because I signed up at msnewstoday to educate myself, I am shocked and disappointed in what I read. All the topics seem to be about changing MS drugs from one to a new one, how horrible will I feel. And the ads on the page?! They are all ads for MS.drugs! Drugs with wicked side effects that will take away the discomfort We all suffer with MS symptoms but, tge side affects have you so sick you dont want to get out of bed. My plan is to make a complete change in my diet. I have read books that have inspired me to change what I eat. I have not seen 1 mention of a Paleo diet guide for autoimmune diseases and the success stories from MS patients that went with this method. I wonder if any of you realize what I do. Think about it. Really, think about what Ive said about the drugs, the ads. We all have alternatives, different choices. Not just giving in to the drugs. I refuse to.

    • Debi Wilson says:

      Hi Debbie,
      I relate to all you are saying, I have seen others have good and bad results on MS drugs.
      I am at a point, where I am considering DMT. I feel I am declining and It might help.
      I will definitely write about my journey if I do!
      Best to you, Debi

  35. Ida Lewis says:

    My sister Neely diagnosed today 6/5/18. She is 46, AA,
    Symptoms: abnormal gait with came assist, fatigue
    She takes water aerobics and PT
    Where do we begin?

  36. Stan Quick says:

    I want to thank everybody for their insights. I am 72 and newly diagnosed Progressive MS as of the 4th of June/18.

    I am very much in the research mode. It is what it is and I am drug adverse. I have foot drop and paresis in the left leg and numbness in the right. Tire easily but that gets me out of extended shopping. I have a great support team at the clinic. I am still working but I think it may be time to do more art work.

  37. Dan says:

    Debi–Please explain the age thing regarding Ocrevus. You said because of your age, there is a limit (5 years) to how long you can take it. I’m 71.5 and expect a diagnosis of PPMS soon.

    • Debi Wilson says:

      Hi Dan, I just saw your comment, I’m sorry if you have been waiting.
      My last neurologist said that I could be on Ocrevus, but for only five years as I am 61. His explanation was that due to my age, any longer than five years would put me at risk to develop something more serious. I see a new neurologist at an MS Center next week, I will definitely ask them about the five-year recommendation. I will keep everyone up to date on any treatment I choose through my column. Thanks for your question, Debi

      • Dan says:

        Debi…I went to another site this morning (June 21) and there were many stories and comments about people aged 65 and older who are receiving the drug. So I’m a little more hopeful now and maybe you should be also.

        Dan

        • Debi Wilson says:

          Thank-you,Dan, I appreciate you taking the time to let me know your findings! Did any of the articles mention the five year limitation? My Doctor did say I could be on Ocrevus, but, not over five years due to my age.
          Debi

  38. Dan says:

    Debi…I assumed from what you wrote that after age 66, no one would be allowed to take the drug at all, which would have eliminated me right off the bat. I should have checked closer. Maybe no matter how far past age 60 you are, you can take the drug, but time is limited to 5 years. I’ll check this weekend.
    Dan

    • Dan says:

      Debi…On June 22, at the other site I mentioned, I asked the question about Age/Ocrevus limitations and received no response.
      At that site there were contributors using Ocrevus aged 75×2, 69, 62, 60, and 57×2. None of them mentioned an age limitation.

      Dan

      • Debi Wilson says:

        Hi Dan,
        Thanks for checking! Two days ago I saw a new Neurologist. She wasn’t aware of a limit on how many years you can be on Ocrevus when you are older.
        She did tell me that the side effects can be worse for older patients. She also said, that the drug is more effective early in the disease and when active lesions are present. I will be having an MRI and then consider the risks due to my age.
        Thanks again, Debi

  39. MARK D JOHNSON says:

    Debi:
    I am 65 and was diagnosed with PPMS in 2015 at Mayo
    Clinic. I am fortunate that I live an hour’s drive from Rochester, MN. I take gabapentin and that’s it. I struggle with balance, restless legs and some cognitive decline. I walk every day. I work FT (insurance agent) and I can drive. My walking is affected by my balance but I don’t use a cane. My shortterm memory is poor and at work I maintain a log and write down everything that happens so I don’t drop the ball. I work alone so I suppose that helps. I drive to an office. I have noticed a subtle difference in my speech. My articulation is poor (I think because my tongue is not as agile as it used to be) and so I talk more slowly and avoid certain words. Sometimes I’m hard pressed to think of what to say next in conversations and I think it’s due to MS since that was never an issue when I was younger. By the end of the day I’m tired but I keep it to myself. I notice my wife doesn’t like to talk much about MS and I think she is trying to deal with my problem on her own. It would be nice if we could talk about it more. I am resigned that I must work out the emotional part of having MS on my own. My neurologist told me I will deteriorate but “very slowly.” Another neurologist who looked at my MRI results told me it looked like some of the lesions were “decades old.” By the way, both my father and his brother had MS. As I review my post I see it seems somewhat negative and I want to add that I am upbeat about the future; not downcast.
    Mark

    • Debi Wilson says:

      Thank-you for sharing your story Mark, it’s very interesting. Living with MS is challenging! I am glad you still are able to work full-time and have a positive attitude! The best to you, Debi

  40. joanne says:

    Thanks for sharing! I can relate to a lot of what you said. I have been given the runaround for about 8 years now and have given up so many times; 2 or three year gaps in between one neurologist and the next. Finally last week I see a tiny bit of hope. I saw an MS Specialist for the first time and she knew everything I was saying and could explain myself better than I could. I was so thankful to have gone (I nearly chickened out for anxiety and frustration of having to go through it all again with no results). She was shocked that I only had one scan of my spine and neck, and that was over 6 years ago. She said most of my symptoms would present themselves in my spine, so why has this not been pursued actively?! Probably PPMS.
    I have the spine and neck scans next week, though I don’t know if it’s on an “extra sensitive” MRI scanner?? Why is that not standard for everyone?
    Thanks again for sharing.

    • Debi Wilson says:

      Thank you for sharing your story with us Joanne! I am Not sure about your scans every patient and doctor are different the best to you, Debi

        • Debi Wilson says:

          Hi Bill,
          I haven’t had a lot of experience with medical Marijuana. I have used edibles and it did help my pain, yet left me feeling groggy the next day. Would you like to share your experiences and how medical marijuana helps you? Thanks for your question, Debi

          • brian says:

            I have PPMS that has left me with MS hug 24/7. I use MMJ to take my mind off the intractable pain. It works, doesn’t stop the pain, it just lets me escape for a while.

          • Debi Wilson says:

            Hi Brian, I am glad that you found something that works for the pain. Thank-you for sharing that! Best, Debi

  41. AK says:

    Hi Deb et al. I have had PPMS for a few years. All my neurologist offers is a yearly MRI. I would have to pay up to $28,000 (au) for OCREVUS yearly (it is not funded for PPMS) and he doesn’t think it’s worth it. I follow a combination of Wahl and Jelenik diet (no red meat, no chicken, no dairy, no gluten, no sugar, minimally processed food. I live on Champagne, vegetables, fruit, salmon and more champagne.) All good for weight control, but not for energy (of which I have none). I just meditate, sit in the sun, knit and try to remember what it was like to jog, hike, play harp, garden, walk my dogs, house clean and work. I am told that I would be less depressed if I got more exercise; REALLY? The blind wouldn’t need a stick of they could see better. The exercise suggestion came from the neurologist! What does he NOT understand about the fatigue of MS which passes all understanding.
    Anyway, I have discovered the wonders of cruising, so there is an upside to this affliction. Time for another champagne (also does wonders for pain).
    Cheers, AK

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