What It’s Like Constantly Living with Primary Progressive MS

What It’s Like Constantly Living with Primary Progressive MS

My column last week was a recap of my journey to a primary progressive multiple sclerosis (PPMS) diagnosis. This week’s column continues that theme by showing a glimpse of what it is like to live with PPMS on a daily basis.

To say that having a disability like PPMS is difficult would be a huge understatement. It is relentless, unfair, painful, debilitating, and most of all, very unpredictable. It never takes a vacation or offers much in the way of relief.

With the array of symptoms that this disease brings it is hard to keep up. Fatigue is a major player in PPMS — not just the physical fatigue, but also the mental exhaustion. I am always contemplating my every step and calculating the safest and shortest route with my rollator walker. It eventually takes a mental toll.

Imagine wanting to jump up from a chair (which I remember doing) and running to the kitchen, or whatever you want to do. Those of us with PPMS know that we are not going to jump or run anywhere — especially not without planning it out before we move.

I try to reserve my energy like it is gasoline in a car’s gas tank, to be used only on things that are a necessity. Having multiple sclerosis drains my tank very quickly, so it is always best if I have my day planned in advance. But even the best plans can go awry and I can overdo it, in which case, I can expect two days of resting to catch up.

My lack of energy coupled with leg spasms and weakness is even more taxing and painful. Plus, it can be incredibly scary, because when my leg has a spasm (whenever it chooses to do so), it can give out on me and I can fall. The only warning I have is a sharp pain and then I am on the floor. So, this symptom is a major safety concern.

Add to that the cognitive issues. This includes having trouble remembering words mid-sentence and things that just happened. Actually, remembering anything at times is very difficult. This “cog fog” added to my other symptoms can make my day very frustrating!

I can experience other symptoms as well, such as bowel and bladder problems, depression, emotional issues, vision and hearing problems — the list goes on. Due to the fact that the protective coating (myelin) on my nerves is being worn away, anything can malfunction at any time.

That is why the symptoms differ so much for each of us with PPMS. Where the myelin starts to corrode, lesions form. When many lesions appear, many areas are affected. You get the picture. That is why PPMS is so unpredictable.

Although living with PPMS is challenging, I remain positive and enjoy life as much as I can. I have a strong faith in God and the support of loving family and friends. I will continue to pray for all of us with all types of multiple sclerosis that a cure for this terrible disease is right around the corner!

***

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.

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96 comments

  1. Pat K. says:

    I too have PPMS but I tend to call it “MS Lite” as things could so much worse as shown in the above commentary.
    The progressive worsening of balance and mobility causes many changes in my lifestyle but often that is due to certain mindset and can be compensated for with many aids at my disposal in my MS “garage”.
    I do agree with Debi about MS fatigue being so disruptive. It is the one thing that I find hardest to deal with due to its unpredictability. I can be having a nice dinner out with friends, being the life of the party on occasion, when I am suddenly hit by draining of energy and can barely keep my head off the table or keep from slumping in my chair! The only thing to do is to try and wait it out (sometimes 10 minutes can help, but usually longer). Does anyone have a good fatigue fighter to pass along?

    • Debi Wilson says:

      Thank-you Pat! I am glad your MS is “MS lite”, I love that term and your positive attitude! As for things to help with fatigue, what works best for me, is to pace myself, lots of rest, eat well and exercise in spurts. I still have fatigue, but, doing those seem to help. Best to you, Debi

    • Karen L Nunley says:

      Hi Pat, for me I use peppermint essential oil on my spine when I’m not home, and I let cold water run down my back in a shower why sitting in a shower chair for at least a couple minutes. If you can manage it try it. Sometimes it makes a world of difference.

    • Joe says:

      Hi Pat,
      I have SPMS and over the years I have tried many things for my fatigue. Recently my doctor had me try low dose Naltrexone. It took about 2 weeks before I noticed any thing but it helps me for my mornings. A half of a day is better than nothing. I know everyone reacts different but you should ask you doctor about this. It is a compound drug and my insurance doesn’t cover it but it only cost $47.00 for 30 pills. Best wishes to everyone.

  2. Jae says:

    Thank you… You did an excellent job of capturing the feeling and put it into words I have been feeling. Especially dealing with PPMS.

  3. Belinda says:

    Great report!
    Thank you so much!
    I live in pain everyday & yes you are right about everything. Fog brain & all.
    I have remitting/relapsing MS but what you described feels like it’s primary progressive MS.
    Thank you once again & i pray for a cure for all of us living with this hard disease.

    • Debi Wilson says:

      Hi Linda,
      I was diagnosed in 2010, it took years. The University of Washington finally discovered lesions on my spine and brain through an ultrasensitive MRI. My column last week was about my diagnosis, there is a link to that column in this article. Thanks! Debi

    • poppy says:

      I am the same as you. Took a long time for PPMS to be confirmed (repeat MRI’s and nerve conduction studies). Only had Lumbar puncture because my sister (a doctor) insisted she wold not believe me otherwise. Worst 2 weeks of my life. I no longer speak to my sister (55 years of abuse was enough).

      Just disappointed that my neurologist wont let me try OCREVUS.
      I get very little pain, just discomfort (spasms) in pelvic region, and fatigue 😂 which passes all understanding (as well as the heat sensitivity). Am gluten and dairy free now, which I think helps. Try to walk dogs every day but this is a REAL effort (we live in hilly area). Those of us with PPMS are really neglected. Now we go on cruises, as I can’t walk much. So it is a very expensive disease!!!
      Cheers, Poppy (Alison K)

      • Eleanor says:

        My partner was just diagnosed with PPMS and we asked about Ocrevus also when it wasn’t offered. His doctor said he would prescribe if he wanted it but he and other neurologists at the MS clinic felt it was not really a good option for This type. They felt the trials were skewed to imply it was helpful for PPMS.
        My partner has decided to wait to see how it progresses over the year and will ask for it at later date.
        I couldn’t agree with you more about feeling neglected. Being new to this MS ( only months) and doing my own research there is a real absence of information and drugs to offer any hope.
        My partner is waiting to hear if he will be accepted into a new drug trial for PPMS at Calgary Foothills MS Clinic. Fingers crossed he is accepted and they find something that helps slow the progression.
        I must say we feel fortunate that he only sought help back in February after getting sick with the flu/cold in January when his his symptoms worsened and was diagnosed by May. Looking back he was showing symptoms for s couple of years but he never went to see s doctor about it.

  4. RICK HAGGARD says:

    I was diagnosed in 2005 with PPMS, it has been a slow and painful daily progression.
    I can relate to everything you are saying other than the bit about hope for finding a cure.
    They have no interest in finding a cure when they can get $66,000 from each of us EVERY YEAR for two infusion treatments to “slow the progression”, even the doctors will tell you, as mine did, “you probably won’t notice the reduction in the pace of the progression” and that “if it wasn’t covered by insurance and had to pay out-of-pocket you’d be better off spending the 66K on a extended trip around the world”

    • Debi Wilson says:

      Thank-you for your comments Rick! I totally understand what you are saying about a cure, but, I still remain hopeful. The best to you, Debi

    • Mike Desi says:

      57 years old, diagnosed 2002. My doctor said there is nothing that works for PPMS, he would call me when there is. That was over three years ago, have not heard from him. Don’t waste the money on drugs that make you feel like shit, hurt your body, but “suppose to slow progression down” Clean living and diet, clean the gut, will make you feel much better.

    • poppy says:

      I only just read this. I agree, the cost is HUGE!!. I can’t afford it, but am (like you) cruising now. My neurologist doesn’t think Ocrevus will help my Primary Progressive MS much. He doesn’t think I’ve deteriorated enough to warrant it. I said, “I don’t want to deteriorated at all!!”). I do recommend the gluten/dairy free diet, but I’m not stopping the champagne!!

      Only problem is travelling by plane (need to wear face mask and surgical gloves to avoid infection).

      Next question. IF AZT can interrupt immune system in people with AIDS, why can they use it for MS?? My immune system is having a field day attacking my brain and up and down my spine . I want it to stop.

      Cheers, AK

    • Eleanor says:

      I would like to hear about your experience with PPMS as there is so little info out there on PPMS. How old were you when diagnosed and how long did you experience symptoms before being diagnosed?
      What level of disability are you currently at? I know all cases are different but my partner was just diagnosed at 56 and we don’t know what to expect.

  5. Curtis Juncker says:

    Your writing about your PPMS is more like those with RRMS….seems as though your disease is very active not inactive/degeneration like many of us with PPMS encounter with very slow progression/no new active inflamation.

    • Debi Wilson says:

      I was diagnosed in 2010 with PPMS due to my ever present symptoms, I never have lapses where I do not have symptoms and I have a gradual, yet, distinctive progression. That is PPMS. Thanks for your comments Curtis. Debi

  6. Senator says:

    Yes, PPMS is tough to deal with. Diagnosed in 2011 it progressed rapidly to me being wheelchair bound by 2013. Went through the sleeping problems to where I would be watching TV, and before I knew it, the show was over. I would have what I called pass out periods to where I just passed out for 30 – 45 minutes. Only happened at night luckily, sitting in my chair. That was about 3-4 years ago and does not happen as often now. I get up @ 7a every morn and get really tired around 12:30 1p and lay in bed for about 2 1/2 hrs, sometimes sleeping.

  7. Steven Weisz says:

    I’ve been diagnosed with ppms since 2000 when I turned 30 and I consider myself lucky since I’ve been able to continue working full time and my biggest issues are the spastisitry and numbness and tingling I feel throughout my body. I now use a wheelchair to save my physical energy reservers (started about two years ago) and it alows me to be able to do more at work and at home. I understand what you are going through though, every morning I wake up and wonder “Am I going to make it through the day” but I do and I hope the next day will be another small victory, one more day this unwelcomed visitor doesn’t take me down. Thanks for sharing with us Debi.

  8. Gregory says:

    Don’t know what pain free day is. Left drop foot really bad,spasms,balance off,just a small foot nudge and I’m gone over.Have no patients,moody, tempermental,short fuse.Plan walking venues home/work to do much as possible.

  9. Kathy Marsden says:

    I was diagnosed in 1999 after years of being a runner, triathlete, etc. Now use walker and scooter. I was excited when Ocrevus was approved. Have had two infusions paid by insurance. Ended up in hospital on antibiotic IV for four days. Have not gotten back to “normal” – whatever that might be. Agree better off taking a vacation.

    • Debi Wilson says:

      Sorry to hear what you are going through Kathy! Thank-you for sharing your story! Good luck to you, Debi

    • Wendy Morgan says:

      Curious in same situation. Came off Tysabri end of year. First 1/2 infusion sent me to urgent care 103 temp. 2nd half infused after fever subsided. Have been downhill since. Balance, vertigo, cognitive decline, leg decline, breathing problems ect. Not sure if O or just rapid progression. Like to hear your experience.

  10. Carol says:

    Hi to everyone living with PPMS.
    Like Rick, it has been a slow journey, since I was diagnosed with the condition in 2005. I could never have imagined, in my wildest dreams, how
    awlful is was going to be.
    I feel like an onion, being slowly peeled away, at times. It makes me wonder were it’s all going to end!

    I do try to stay positive. I have a good support network of friends and family where I live in London. I try to count my blessings but I miss my independence. Where I have to plan just about every aspect or my life.

    Enough of the moaning about my MS. Just remember what professor Stephen Hawkins said “never give up”

  11. Jeff Bowden says:

    My heart goes out to any and all diagnosed with MS; be it RR, SP, PP, or even a “clinically isolated” instance. We all live with this dark cloud hanging over our heads.

    I was diagnosed in 1977, after several years of symptoms. It has cost me so much. I’ve temporarily lost my vision, had constant fatigue, so many unexplained falls. I have so many memory problems I tell everyone “my memory is so bad I can hide my own Easter Eggs”!

    I was rediagnosed in 1999, had my first MRI and started on Avonex. I have steadily progressed over the years, my lesions on my last MRI even astonished my Psychiatrist! I have been in a power chair for the last seven years.

    The point is that everyone has issues, whether it’s MS or Cancer; it’s not that we have them, it’s whether we let them rule our lives, make our decisions for us.

    I am now on Ocrevus, it actually seems to help. It won’t make me nineteen again, but I’ll take anything I can. I’ve cleaned up my diet, got what exercise I can, do everything I can to sharpen my brain; and get the most out of life I can.

    These are wonderful articles, it’s so good to hear from others how they deal with the same issues as I, how they adapt to the same challenges. But too often we dwell too much on our issues.

    As I recently discussed with a person with terminal cancer, I told him my view on life is “laughing or crying the end result is exactly the same”. Too much of “Poor, Poor, Pitiful Me” may be a salve for your conscious but it just saps the vigor out of what life you have.

    “Get busy living or get busy dying” Stephen King

    • Debi Wilson says:

      Well said Jeff, a positive attitude is everything. Most of my columns focus on the positive, to see the good around us, be thankful for what we have and for the kindness of others. With this column and my last, I was hoping to convey to others what we go through on a daily basis. People just don’t realize, I know it is hard to relate unless you live it. Thank-you for your comments! Best wishes, Debi

    • Jaj says:

      Hi Jeff, funny thing that you said about the Easter eggs and hiding them on yourself, my brother said the exact same thing to me the other day and we all laughed even though it could be true and I also am a huge Stephen king fan and I remember that quote and that makes sense too. I was diagnosed with ms in 2009 and my neurologist told me that with the uncertainty uncountable lesions on my brain and lesions I have had it for decades. I’m assuming it started when I was in my twenties, I am now 48. Still going alright but I am waiting for getting Ocrevus which was just approved here in Canada which is where I have always lived. I also went to India in 2014 and got the liberation treatment and it was amazing. As soon as they unblocked my blockages in my neck I could feel it going down my neck and when I got back to my room after recovery and talked to my sister who went with me, she could tell right away that it did something cause I could speak way better and think way better and walk better. She was amazed and I told her that as soon as they released the blockages I had a feeling of waking up and felt great! I think that’s why I am not as bad as a lot of people in my town or have talked to. It’s not as good as it was there but I am not too bad I can still walk, and function quite well, memory is still a bit of an issue, but I do go to a gym as much as I can and am trying to eat better, which I’m not very good at. Ok I should go and I wish you and everyone else good wishes and the best luck in everything you can do!

      JaJ
      Of

  12. Cheryl Vander Linden says:

    Thank you for this column! I was diagnosed in 2014. My first recognizable MS symptom was foot drop in May of 2013. My MS is aggressive and I can no longer walk so I have to use a mobility scooter. I rarely find articles I can relate to but your words spoke to me. I try to remain as positive as I can and I am grateful I wasn’t diagnosed with Parkinson’s, ALS, cancer etc. but sometimes it’s good for my soul to hear I’m not alone with these awful symptoms. I don’t know what a remittance feels like as my symptoms never go away they just get progressively worse. So many articles are written in the RRMS perspective and I can’t relate to them. I was uplifted reading your column because it wasn’t negative but simply honest. Thanks for sharing.

    • Debi Wilson says:

      Thank-you Cheryl, I appreciate your kind words! We are definitely not alone, there are so many of us MS warriors fighting this disease together! Best to you, Debi

  13. Carol says:

    That’s great that your neurologist has put you on the drug, octrevus.
    Unfortunately, here in the UK it hasn’t been passed by NICE for people with PPMS. I hope it helps you.

    I try to live my life to the full. Painting and travel are my passions . Both challenging. I’m going on a cruise next month to Spain and France. Cruising for me is the best way to travel, now I’m disabled (hate that word) I also sold two paintings at Christmas!

    Thank you Debi for your article, I identified with it.
    I’m sure many of us do.

    “Love and live your life to the full and make everyday count”
    Carol Allen

    • Debi Wilson says:

      Hi Carol! I am glad to hear you are traveling and staying active! Congratulations on your painting and sales! I am still deciding on Ocrevus for me, but, I am receiving great advice from fellow MSer’s! Wishing you the best! Debi

  14. Joy says:

    Thanks Debi and Jeff. Your article “What it’s like constantly living with PPMS” is so important. I have had symptoms since 2000, with finally a diagnosis in 2007. Having it for so many years, I still have trouble describing to people (in terms that they will understand) what it truly is like. People just don’t seem to grasp what we tell them, unless they have been through it. That is why people like you two need to continue to tell us about your daily walk with MS. So that those with the disease can have a glimpse into just where they stand in the total realm of things and that those who don’t have the disease will come to an understanding and empathy for those who do. It means so much to us who suffer (no matter how) that our symptoms are validated by friends, family, doctors, physical therapists, and other specialists that impact our lives.
    Thanks Jeff for the quote at the end of your comment. I have been busy dealing with fatigue the last few days. I think it’s now time for me to “get busy living” again.

        • Debi Wilson says:

          Just what I have read about Ocrevus. That some of the side effects COULD be infection or cancer, I think those two worry me the most. But as with all things, I ask myself do the risks outweigh the rewards? It’s possible that the risks may never happen and the rewards may be great. It’s just hard to know. Thanks for your question Marc! Good luck to you , Debi

        • Judy says:

          Kathy, I have PPMS and was diagnosed in February, & I’m 65!! I had two Infusions of Ocrevus also!! I fell in January, n my fall was bc I missed a step, went to the ER, had an MRI n was told to see a Neurologist! If I wouldntve fallen, I wouldntve found my MS!! I’ve had all kinds of symptoms in the past, n now I know why!! Stay strong💕

  15. Tommy says:

    When I started reading your article, my first thought was “wow, when did I write this?” After a couple of years dealing with local docs and getting nowhere, I went to Mayo in May of 2016, ending with a dx of PPMS. Still able to work, have a phenomenal support system – family, friends, co-workers, medical – and try to find that silver lining, but it gets more difficult as I can track the downward slide. Sorta surprised that I haven’t had any of the big three (cry, scream or put a fist through a wall) in the last 2 years, and, just to keep things interesting, add in a little skin cancer, but have to admit, I get really good parking places. Thanks for your article!

    • Debi Wilson says:

      Thanks for your upbeat comments Tommy! I am happy you have a great support system and living life! I have found living with a positive attitude really helps, it seems like you know that as well! Best to you! Debi

  16. Cherie Feinberg says:

    Hi All and thanks for your comments. I was diagnosed with PPMS in 2007 and have had a steady decline. While I used to love to dance, I now need a cane or if I am going to be somewhere that I know I will need to be walking distances, I rent a scooter. I have a wonderful doctor who is willing to try whatever drugs she think MIGHT help. I had the initial 2 infusions of ocrevus as well as the six month follow-up infusion but I haven’t seen any difference. I have been doing pilates twice a week for years to try to maintain as much movement as possible, I also have the brain drain at times that many of you wrote about. Where I used to speak in front of large audiences in the past, I now find myself trying to remember the simplest words. Sometimes I give the definition to the person I am talking to and they guess the word – I guess that’s my newest game! I’ve learned to live with the almost constant fatigue as everyone else has spoken about. The most important thing we all have to do is remain positive and hope that in the near future either a cure or a medication will actually be found that will make a positive difference for all of us.

  17. cynthia says:

    Thank you Debi….very real explanation of what MS is like….I had RRMS but now have SPMS….and everything you wrote about is also what I am going through.I think that one of the most frustrating things , is that a lot of the time we look so normal to others….they don’t understand that our whole day….and often our every step …takes all of our concentration and energy…I had a close friend ask me if I was ” trying my best”,or was I just ”being lazy ”because I have MS , and it is a good excuse for not doing things.I know that you all understand when I say that I ”push myself”to keep going.Also…about fatigue…I have found that an Anacin tablet [only on a really bad day] does help with fatigue…..I seem to ”rally around” instead of feeling like I will fall asleep standing up.
    Debi….keep writing…I really enjoy your thoughts….thanks

  18. Kristine says:

    I’m exactly like you. I went from drop foot to cane to walker t wheelchair. I tried copaxone, tecfidera and ocrevus IV therapy drug. None worked out for me. I’ve had so many mri’s. I told my neurologist I’m not getting any for awhile. I’ve had 15 in the last eight years. I had a spinal tap. I just keep saying to myself that someday in God’s timing I will be healed. I try and eat right and exercise when I can. I try and be positive. I don’t have any active leasions, that’s why the ocrevus didn’t work. I pray that it works for you 😀. Blessings

    • Debi Wilson says:

      So true, Kristine! Thank-you for your comments and well wishes! Not sure if I am going to try Ocrevus yet, but, I will definitely write about it if I do !:) Debi

  19. Kimble Weeks says:

    Deb thanks for sharing your daily walk. As I read it I said to my wife, it’s like I wrote this. I too find myself plowing through the day, planning my every step, looking for walls to bounce off on and conserving what little energy I have in the tank.
    I thank God daily for allowing me the time to have fun with my kids, get them marrried off and yes, walk my daughter done the aisle all before I progressed to PPMS. My journey started in 2001 and today I am a much different person.

    Not that everyone’s like me, but I encourage each of you to be persistent. Persistent to get out of bed each morning, pain or not. Persistent to not let the disease tell you how it’s going to be but to carry on instead. Listen, my wife has to drag my butt in after 10 minutes of doing the simplest, petite, stupidest little chore but I tell her, please don’t remind me about what I shouldn’t be doing! MS reminds me about that for free.

  20. Hello Debi

    Thank you for bringing a little light on life with PPMS. It is, as you mentioned, relentless and never gives us a break.It is so hard for others to understand how PPMS impacts us every minute of everyday.

    Your article should help those who know a MSer understand a bit of what we are faced with. I read a great compassion once on what we are faced with.

    It stated a normal person has ten spoons of energy to last them all day. A MSer on the other hand has five spoons of energy to keep us energized all day.

    Thank you again for shedding some light on what we deal with!

  21. Judy Crutchfield says:

    Debi,
    You described PPMS well. You said what many have no clue about. A great medical history lesson. Thank you for being transparent. I stay positive, trust the Lord, pray for the researchers and doctors, and live each day without MS owning me. I am thankful for people like you. Thank you.
    Judy

  22. Ruth says:

    Another well-done article Debi!! Thought I was unique in planning even simple outings! I have a rollator but don’t use it everywhere – I can imagine it becoming necessary.
    Keep on writing!

  23. John says:

    I was diagnosed in 2011 with SPMS. My experience of MS is much the same as those mentioned above. My wife has left me ostensibly because she has a right to be happy. We have a 23-year-old son who has autism. He and my 15-year-old daughter live with me. I have little family support Fortunately,I receive outside support through the National Disability Insurance Scheme for cleaning and home and garden maintenance as well as access to the community. It is perhaps a little ironic but I am grateful to have the responsibility of caring for my children as it gives me a purpose every day and a need to push through the fatigue, impaired balance, muscle spasm and leg weakness I invariably encounter.I am fortunate to have a power chair which enables me to get around the yard watering plants and so on.
    I take it Biotin tablets (100g 3 x per day) and Baclofen for muscle spasm. The Baclofen greatly compounds my fatigue and so am discontinuing it’s use. My Neurologist has recommended I commence Ocrevus. Like Debi I have some reservations about the risks and am not sure whether to follow his recommendation. I do not expect that the medication will necessarily improve my disabilities more that it may slow any future progression.
    Interestingly, some weeks ago, I was tipped out of my power chair whilst watering the lawn. Whilst struggling to right myself,I was bitten by what I believe was an ant. The next day, my elbow had swollen considerably and amazingly, I was full of energy and able to walk quite freely and give assistance to my gardener for about three hours. My mood was also much improved.
    On a previous occasion I was all so eaten by a bee on my middle toe of my left leg. The sting was dull due to the numbness I always have in my toes. Amazingly, I was able to raise my left leg with the after the bite.
    It is hard to know whether you ant/bee sting caused a beneficial neurological effect. My Neurologist was little interested in my story.

    • Debi Wilson says:

      Thank-you John for sharing, I found your story very interesting. You sound very positive and keeping active! The best to you, Debi

  24. John Weiss says:

    I consider myself very lucky to “only” have relapsing/remitting MS, though symptom wise this is very familiar, just with the amplitude turned down. Is anyone having any luck with the new treatment that targets progressive MS? When I was diagnosed (in 1984) I knew it was trouble when my doctor went on and on about we have seen this, and we have seen that, but not one word about this what we can DO about it. It was 10 years before the first treatment for relapsing/remitting MS became available around 1990, and now in 2017, we have the first drug that TREATS progressive has become available. Yet never heard a neurologist use to word CURE. I wonder when Watson, the supercomputer that beat the world’s best Jeopardy players will be asked to suggest what is the most promising avenue to search for a cure.

  25. Linda Pasini says:

    Hi Debi, you are a Godsend. I love reading your blog and the comments. You radiate encouragement and positivity, which able or disabled people should project in order to live a full and happy life. My husband has PPMS diagnosed in 2000 but we know he had it longer than that. The progression, luckily for us, was slow in the beginning. The last year and a half is really started to speed up and is breaking both of our hearts (we have been married 39 years). If there are any vets out there make sure they contact the VA since without them I would not be able to care for my husband at home. They have provided us with many tools so that we can still travel this journey called life together at home. God Bless you and your followers.

    • Debi Wilson says:

      Hi Linda, Thank-you so much for your kind words! I really appreciate your comments, and for sharing your story!
      Best wishes to you and your husband! Debi

  26. RW says:

    Hi Debi,

    I’m curious what you know about Gadolinium Toxicity? Gadolinium-Based-Contrast Agents or GBCA’s are a heavy metal contrast used in millions upon millions of MRI scans every year. The MRI scans w/Gadolinium are used in MS patients sometimes 10+ times throughout the years and are now known to settle in the brains, bones and other organs of unsuspecting MS patients. I am trying to find out why the MS community is not making this information a prominent warning to all MS patients and their caregivers?
    This heavy toxic metal is making MS patients even sicker yet the FDA so far has issued only a “black box” warning. That’s pretty ominous itself! I found the gadoliniumtoxicity.com website to be extremely informative and helpful and I hope you will write a story on MS News Today to inform your readers of what the GBCA’s are really doing to their bodies. Thanks in advance.

    • Debi Wilson says:

      Thanks RW for your comments and suggestion for my column. I will definitely research gadolinium more, I find it interesting as well. You may be interested in a column I wrote in 2016 heavy metals

      • RW says:

        Thank you for responding so quickly Debi! I did read your column on heavy metals and what interested me the most was the fact that your Naturopath was able to test for metals with lab work and a hair sample.

        Could you share the name of your Naturopath or the lab that did the work for your Naturopath? I know a long line of heavy duty gadolinium toxic metal sufferers that would love to get their blood and hair tested. I’ve learned that Mayo does have a 24hr urine tests but they have not come up with a specific number that establishes how much or how little Gadolinium will be their “red line” to judge over or under even though they are perfectly aware that Gadolinium contrast agents are deposited into the brains, bones and organs.

        You wrote in your column:
        “The jury is still out on the role, if any, that heavy metals play in multiple sclerosis.”

        *THEY DO KNOW THAT THE GADOLINIUM BASED CONTRAST AGENTS (GBCA’s) WHEN INJECTED DURING AN MRI SCAN WILL REMAIN IN THE BRAIN, BODY AND ORGANS OF THE PATIENT SO THE HEAVY METAL GADOLINIUM DOES “PLAY A ROLE” IN MS.

        The National Multiple Sclerosis website, under its list of disproved theories, has this to say: “Although poisoning with heavy metals such as mercury, lead or manganese can damage the nervous system and produce symptoms such as tremor and weakness, both the process and the symptoms are different from what occurs in MS. There is no evidence that heavy metal exposure causes MS.”

        *THE MEDICAL COMMUNITY HAS ABSOLUTELY ZERO IDEA WHAT CAUSES MS. IN THE MAY 19, 2004 ISSUE OF JOURNAL OF THE NATURAL CANCER INSTITUTE THERE WAS AN ARTICLE WITH THE HEADLINE, “MS AND HODGKIN’S LYMPHOMA MAY RUN IN FAMILIES.”

        “Maybe there is no concrete evidence to prove heavy metals contribute to this disease, but I also couldn’t find any concrete evidence to prove that they don’t.”

        *I APPRECIATED YOUR HONESTY EVEN IF THE NATIONAL MS SOCIETY WASN’T COMPLETELY HONEST ON THEIR OWN!

        “In an online search I conducted, I found that some of the most common symptoms of heavy metal toxicity include: chronic fatigue, autoimmune disease, neurological disorders, brain fog, depression, bipolar, anxiety, dementia, and insomnia. Any of those sound familiar to us with MS?!”

        *THE QUESTION BECOMES BEFORE OR AFTER GADOLINIUM?

        “My naturopath was able to test for metals with lab work and a hair sample. The results came back that I have not just one but many metals in my system. One that really baffled her was traces of the dye gadolinium from my contrasting MRIs.”

        *SHE SHOULDN’T BE
        BAFFLED TO KNOW GADOLINIUM WOULD SHOW UP INSIDE THE BODIES AND BRAINS AND ORGANS
        * IT IS KNOWN THAT GADOLINIUM CONTRAST AGENTS (GBCA’s) STAY IN THE BRAIN, BONES AND ORGANS OF UNSUSPECTING MS PATIENTS

        With millions upon millions of MS patients getting MRI’s with a GBCA’s, they are the most susceptible to the GBCA’s being retained in their brains and bones and organs. The worst part is most MS patients don’t just get one or two MRI’s with a GBCA, they get several throughout the years! I will cut and paste information below about a story I found on the MedInsight.org website regarding Gadolinium.

        On the MedInsight.org website in April 2016, they had an article about Gadolinium.

        The title was, “The Safety of MRI Contrast Agents Questioned.”

        The article states, “Gadolinium-based contrast agents, which are used in about 30% of all magnetic resonance imaging (MRI) scans, MAY NOT BE SAFE. The metal MAY settle in the brains, bones and other organs.”

        “This literature review analyzed studies detailing how Gadolinium, a toxic metal used in over 30 MILLION MRI scans each year, STAYS IN THE BODY.”

        Just think about this for one minute. Over 30 million MRI scans performed EVERY SINGLE YEAR use Gadolinium!!! And this is only 30% of all MRI scans performed! Read that again!

        That is millions and millions and millions of unsuspecting patients being given the contrast dye (aka…“die”) every…single…year!!!

        I’m grateful that you will check out the resources I’ve mentioned here and that you can inform the MS community, their caregivers, doctors, hospitals, pharmaceutical companies but most of all, the MS patient themselves, of everything that is now know about the GBCA’s and the potential harm they could be brewing up in a group of people with MS.

        Thank you,

        Rose

    • Debi Wilson says:

      Hi Rose,
      The lab tests I had for metal toxicity were completed seven years ago. The lab tests involve blood, urine, stool and hair samples. These are tests that any reputable naturopathic doctor in your area can order for you. Thanks for your question. Debi

  27. Sandra says:

    I have PPMS since 2009 and am turning 61 now. Have been to 2 different nuro. Dr who specialize in MS before I found one I liked and was concerned about my pain and would listen to what was going on with me each time I went in. Plus I could call in if I needed. Yes I travel 150 miles 1 way but it is worth it. I have tried every med there is and they either did not work or I reacted to them. I cant even take steroids anymore now ! I was going to try Ocrevus but cant as you have to do an iv of asteroid or another drug I can not remember I tried , but my throat swelled up again , so the ocrevus is out also now. So my Dr is trying his best to keep my spasms down along with pain. AS my right side I have lost feeling ,left leg is about gone, have MS hug which feels I have a girdle on from my chest to my stomach. At times I think my ribs are going to be crushed. And I do sleep a lot also. There is days I cant get out of bed ifi have done too much the day before. And I use to love to sew and scrapbook everyday with my granddaughters . But now I am lucky if I do it once a week. As I have to look up how to do everything that I use to do that was easy with the embroidery machine, and in frustrates me now. Makes me feel like a total dummy. I have only my oldest daughter who can help me, but I wont ask as she has 2 little (1 and 3 year old )ones out of 4 . Plus she is fighting her own illness fibromyalgia and cronic pain. My so called husband he does nothing for me just says it is my own fault like how is it my fault ? And gripes when a bill comes in. So I have to try and clean when I am able. I just stick around because I need the ins. and a place to live. This how I am treated after being with him 40 years and raised 4 children. He wont even buy anything I need to get around now. My daughter who really could not afford it bought me a cane and takes me to the Dr appointments. And she can barely get around and is in the proses of getting disability. So those of you who have care givers treat them well. As my daughter does her best, gets mad when I wont call her when I need her to even do my laundry down stairs. Yes I will try and go down 1 out of 2 I always fall. You can say I am stubborn she has her family.

    • Debi Wilson says:

      Sandra thank-you for sharing! MS is hard, really hard! Have you checked into seeing if you qualify for a caregiver through the state? Your daughter might even be able to qualify to be that paid caregiver. If you are in the USA they do have programs to help. It sounds like you have a very good daughter, and that you are a very strong MS warrior! Good luck to you, Debi

  28. Gale Langseth Vester says:

    Debi, I’d saved this article for reading at some later point in time, and I’ve just now (closing in on two months since you posted it) read it, or perhaps I had done so earlier but forgotten about it, although I’ve not found any comments by me up above. Thank you for sharing all of these things you’ve done and for the energy you’ve spent to do it.

    As for me, I’ve had primary progressive MS for nearly 9 years already, so I’m wondering at what point primary becomes secondary. A couple of good things that have come my way in the face of this MonSter are that I live in Denmark (where, in spite of its national language sounding like vomitous gobbeldegook, is a good place to have been diagnosed because of its national health system paying for the meds keeping me and others like me going) and that my fantastic Danish husband is the most helpful and wonderful man I could have ever hoped to meet (we’d been together for one year when I was diagnosed, and he’s put up with an imperial amount of bullsh!t to keep me keeping on).

    So, to wind this up, thank you again! And, if I have cog-fog, where is the frickin’ lighthouse already? (Humor keeps me going.)

    • Debi Wilson says:

      Hi Gale, Thank-you for your kind comments!
      From what I understand, relapsing remitting MS turns into secondary progressive MS. Primary progressive starts out as that and that’s the name it stays with.
      I love that you look at the good things in your life, your husband and your medical monetary blessings. Your sense of humor is great! Sounds like you have all of the positives working against MS! That’s awesome! Debi

    • Debi Wilson says:

      Hugs to you Jean!
      Research, talking to your Dr. And learning from others experiences is going to help you. The knowledge you gain will help you learn how to manage symptoms and answer any questions you may have. Here at MS news today you will learn so much and connect with others. We also have the MS forums where you can ask questions and share your concerns. https://multiplesclerosisnewstoday.com/forums/I
      I know how scary it is to get the diagnosis of PPMS. Just know the MS community is here for you with support! You are not alone!
      Best to you, Debi

  29. Jilly says:

    https://www.dailymail.co.uk/health/article-6429733/Teaching-body-fight-glandular-fever-reduce-MS-symptoms.html

    Hope this link works, its about the epstein barr virus and glandular fever linking to MS.
    I have PPMS since 2012, and yes I have to plan to pee lol. Sometimes I run over my toes with my walker, ouch. There is no getting up fast or running ever again, that has to be the most weird part of MS. I have started drawing again as I am time rich now. I most draw feelings in an abstract way to keep me occupied.

    • Debi Wilson says:

      Hi Jilly,
      Thank-you for your comments and sharing your story. I know MS is not fun, luckily, we are not alone in this fight! Debi

  30. Marcia Hoover says:

    Your writing is excellent and certainly an encouragement to many. My husband of 47 years has PPMS. Your words were so familiar to me as I sit in pre-surgery waiting for my husband to have cervical fusions this morning. The prayers of family and friends are supporting me in Gods love and care. Thanks for your good words too. God is here. God is good.

  31. Jim says:

    I have severe PPMS.
    The only relief i get is from CBD tincture.
    Its expensuve but worth ot in my opinion.
    Make sure you order from a company in Colorado where irs sanctioned and tested.

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