My Unique Primary Progressive MS Diagnosis

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.

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.

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.

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.

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.

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?

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.

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.

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...

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.

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.

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)

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.

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.

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.

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, 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 -
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.

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.

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!!!

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?

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.

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

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.

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.

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

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.

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.

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.
http://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

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.

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

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

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 www.stopmyppms.com

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.

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?

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.

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...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

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

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.

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

I am currently 58 years of age. I have had abnormal neurological symptoms since 1986. I went to a neurologist and got worked up (MRI) and told there was nothing wrong with me. I continued with neurological problems until 2014 having been told all the time it was all in my head. In 2014 I got a fantastic neurologist who picked it up (said it was hard to pick it up because I was in such great shape at that time). He decided to do an MRI and it was determined that I had PPMS. Fast forward to today, my disease is getting worse, more lesions on the spinal cord, lots of weakening in my hands and legs. They want me to go on Ocrevus but having studied the side effects, I am not sure it is the best route for me (breast cancer runs in my family and I have lots of immune-lurking illnesses). I am into holistics and try to eat a keto diet (published a cookbook, Grain-Free Goodness) to keep my disease at bay. Interested in your thoughts.

Good day, I haven't had time to read through everyone's comments. I apologize.

Almost 5 years ago, my PCP "unofficially" diagnosed me with MS. He sent me to a neurologist expecting a confirmed diagnosis; but, later the neurologist elected to go a completely different direction, eventually leading us down another path (4+ years).

All of those years, with progressive symptoms, and proven progressive brain damage (Brain MRI), seizures, heart valve issues and strokes, the doctors are scrambling, and I'm being referred to another neurology group with a diagnosis of progressive MS.

There could be multiple disease processes the doctor admitted are taking place in my body, and have been, sadly, missed. We did discover I've been subjected to arsenic exposure and several other toxins through our drinking water.

I also just had a biopsy for Thyroid Cancer, which also grew quite quickly at 6mm in just 7 short months (October to May). (Thyroid Cancer is typically slow-growing at 2mm a year.)

It seems quite odd to me that there's not a connection here, somewhere.

I am very curious as to whether any of you have had a similar experience?

I am certainly interested in learning more.

I am having some trouble processing why the doctors have had such a hard time in diagnosing and treating this clearly progressive disease process.

I'm 68 years old and I was diagnosed with ppms in January of this year 2019. It's pathetic the lack of information and treatment regarding ppms. It seems the MS Society is funded by Genentech and has no problem spouting this FDA approved infusion even though rituxamab has been around longer and ocrevus has not proven to make a significant change in people over 60 with ppms. So we are tormented with choosing a poison that is more likely to cause harm than good, as we watch our Mobility, cognition and hope for answers decline. Last year I was ambulatory though walked with an odd gait. Now I need a walker, as my balance deteriorates rapidly. It's very frustrating that you know you have MS ppms, yet all you hear about is relapse and remission, and that you don't have that, so they are for the medical community has little to offer. My health insurance will not offer ongoing physical therapy even though it's the only treatment that's recommended. Even the neuro physical therapist can't talk about primary Progressive. It's like we don't exist. The MS Society wrote an article in 2008 depicting the Dismal plight of people with ppms. Sadly little has changed. We are the neglected orphanage MS world.
https://www.nationalmssociety.org/Programs-and-Services/Resources/Joint-Conference-on-Primary-Progressive-MS-Focuses?page=1&orderby=3&order=asc
Regarding thyroid cancer this caught my attention.

Apparently my neuro MRI revealed irregularities in the thyroid. After multiple negative or inconclusive biopsies the head of head and neck surgery was convinced that I had metastatic thyroid cancer since I had thyroid tissue in a lymph node. I underwent a partial thyroidectomy. The plan was to remove all of my thyroid but during surgery, it was revealed in the lab that my thyroid tissue was not cancerous. This unnecessary surgery derailed me from seeing an MS specialist for diagnosis. I mentioned it because you asked. There was no coordination between my healthcare providers to prioritize what is more important.

Hi Debi

I’m the same age as you roughly, 61 at the weekend unfortunately! One of the most difficult things to understand I find is that PPMS can and will get worse even if there is no change in your lesions. This can be a nuisance for those of us who rely on disability benefits; the Department of Work and Pensions has been known to take one look at this information, tell you that you’re now recovering (a medical miracle ?) and that you might not need benefits much longer...... if you don’t have a decent neurologist who will take the trouble to point out to them that your symptoms can still worsen, you can very soon be up poo creek without a paddle!

As far as Ocrevus goes, I was lime you very excited about it, and my MS nurse put me on the waiting list for assessment. You can forget all about that, said the gods. My consultant (not one of the good guys) just said bluntly in a letter that no change in lesions = no Ocrevus.

Never mind, at least we won’t have all the side effects to put up with. Curiously, a friend in Australia whose health exactly mirrors mine WAS suitable (she’s our age). How strange.

You know what though? Nothing surprises me any more.

I wish you good health and good luck x

Thanks so much Debi and all who have shared. I am 44, have experienced walking difficulties when I "overdo it" for a couple of years and just got initial diagnosis of PPMS. It is such a variable thing that reading about the facts doesn't help all that much - reading your real stories is fantastic. NZ will trial ocrevus for PPMS later this year, fingers crossed I can give it a go.

Patricia,

We have a superior health system in Australia (just look at a Michael Moore documentary) but it’s unfair I believe because we (the west at large profit from the USA in many ways) we have a fairer medical system to work with

I just pray that you take solice in the fact that MS is pretty whack and nobody deserves it and I for one wish/pray for the best for you. I really do

Hopefully things will get better for you

Dear Debi,

I was diagnosed with PPMS 5.5 years ago at age 50. And a neurologist who thinks I’ve had it for a couple of decades wanting to know why I had not been diagnosed earlier? Think Military Spouse raising 3 kids while her husband is in a war zone, or 14 moves in 22 years, etc. All because of a fall down a flight of stairs where while looking for a concussion 45+ lesions were discovered. A gazzilion tests later and two spinal taps in month led to the diagnosis.
My neurologist put me on 14mg Aubagio. Apparently it is working. My lesions have stopped growing and no new lesions have surfaced in my last 3 MRIs. I have no side affects from it, I don’t even realize it is doing anything. I still have aphasia, wobbly gait occasionally, chronic fatigue, and most people can not tell I have anything wrong.
Then again along with PPMS, I have fibromyalgia, osteoarthritis, degenerative Disc at C5 & 6. The list goes on.
I hope you find something that helps.