The Journey Toward My Primary Progressive MS Diagnosis

Gosh, I thought I was reading my own journey yours is so similar to mine.
Diagnosed with T2 diabetes at age 50 and then several niggling symptoms like numbness, unsteadiness and tripping over things. Eventually I had minor surgery to remove a lump and had a dead left arm afterwards. Various investigations and MRIs led to the diagnosis of PPMS confirmed by a lumber puncture.
Aged 63 now and mobility is very poor and left arm useless but still trying to get pleasure from my garden and growing my own veg.

omg this is me im 60 yrs old diagnosed in 2016 very scary right arm is useless anyone tried ocrevus?

I agree that sounds like me as well. I started having bladder problems in 2008, but didn't go see a Urologist until 2010, but later realized my bladder wasn't the problem. In 2013 as I was walking, which was at the time a primary mode of exercise, for no reason my right foot kept stubbing the walk, little did I know then that this was drop foot. Then in 2015, I was sent to John Hopkins in MD, and they diagnosed me with Cervical Myelopathy. I went to see numerous neurologists and no one could determine if I had MS or not. I finally decided to go the Mayo Clinic in Minnesota and at the time had only one lesion at C1. I now live in Idaho and have a great team here. My neurologist here diagnosed my with actual MS because I now have lesions in my brain and at T12 and L1. I'm still walking, but right leg and arm are weak, have a great Physical Therapist and am on Ocrevus. I'm grateful for all of the doctors, nurses, and physical therapists I've had and will continue to take one day at a time.

Just like my wife! She was 55 when diagnosed with PPMS. Both of her older brothers (10 and 12 years older) had PPMS for decades. We thought she had dodged the family bullet. Her trajectory was just like yours. At 50, her doctor told her she was "pre-diabetic" and put her on Metformin (which as you know is linked to MS). The "pre-diabetes" went away, but the Metformin triggered some "MS-like" symptoms. Then at 53 she "herniated" L5-S1. 2 epidurals got her back on her feet with a cane. No docs saw any indication of MS. Then at 55, she slipped and fell, got an MRI that showed legions "typical of MS". Once she started seeing a Neurologist -- who confirmed the PPMS -- the Neuro said "I'm not so sure your L5-S1 was just a simple herniated disk caused by heavy lifting -- more likely it was connected to the MS"... Wow!

Good luck on your Journey. With 3 siblings all having PPMS in my wife's family, we know that PPMS is almost like a separate disease from the 'relapsing' versions of MS. It's a hard road -- and I'm sad to day the docs no next to nothing about PPMS -- stay strong!

My symptoms did not start till I hit 71, they then came on like gang busters. I have gone down hill fast.

This is my husband’s journey. In his early 50s he developed difficulty using his core, killing his golf game, and mobility issues in the sun. First doctors blamed age, then docs said it was back issues. After almost 5 years of searching for answers he sought a second opinion from Mayo in Jacksonville because our Philly docs wanted him to have back surgery. Mayo diagnosed PPMS just after his 60th birthday and referee him to an amazing MS specialist in Jacksonville - we relocated to stay near good doctors. Ocrevus seems to have slowed the progression and he is doing pretty well all things considered. Gait and walking are a challenge at times but we remain optimistic- thought we were one of the very few to get such a late diagnosis. Makes you think how many other folks may have MS that manifests it’s,Ed later in life who might go undiagnosed.

Thanks for sharing your story Steve. Getting a correct diagnosis in a timely manner seems to be an issue. Mine went down the path of initially treating a lower back/disc injury as well. Like you PT did not help. So my PCP sent me to a spine specialist. He too found strange shading on my cervical spine. Sent me to a Neuro surgeon who said I had Transverse Myelitis and surgery could not help. He sent me to a Neurologist. After cervical and brain MRI’s then lumbar puncture, diagnosed me with PPMS in August 2017 at age 47.

I had developed right leg weakness, foot drop, balance issues, heat intolerance and leg stiffness. My Neuro started me on Ocrevus right away, only FDA approved drug for PPMS. After 18 months, I was still noticeably worsening. So, I researched and decided to have HSCT for MS in June of 2019. Since then my disease progression has stopped and my mobility remains good enough to function fairly normally. I only mention this in case MS patients reading this have not heard about HSCT as an option. This was all I had left to stop the train.

Yep. Almost to a T. I was losing balance. I tripped over a speed bump in a car park, and fractured my pelvis. 5 weeks in hospital. Playing golf one day, and after about 5 holes it was , fellas, I can't walk anymore' And I literally couldn't. GP thought I needed a hip replacement. A year later after much prodding and poking an MRI and Lumbar Puncture; "you've got MS!". I wasn't too disheartened. I'd imagined Parkinsons. Or a brain tumour. That was nearly 3 years ago. I'm 66 and have been retired 12 years, and we travelled our little hearts out.

I need a walker to go out. I can walk a short distance (@50m) without resting. I stopped driving a week ago today. This is a major shit. I can't get myself to the gym, which, I like to think, helped me maintain some level of mobility.

I get some government funding (Australian), that allows us to mantain our apartment, funds physio (although that was at the gym) and pays for assistive technology (a lift chair, and a mobility scooter and/or wheelchair when these become essential).

Getting dressed is a daily chore. I can't do so much of what we loved to do. The impact on my wife almost has me in tears some days with guilt. That's prolly the worst.

But I know your pain

Well. you'd think the PCP's would suspect MS a bit sooner in the process, right? Wrong ... and I'm married to one! Hard to see what's right in front of you. I've had symptoms since 2015, pain in my left foot, mostly. I tried EVERTHING, acupuncture, dry needling, 2 orthos,who said I had severe osteoarthitis, a broken wrist from a bad fall, numerous other (clutsy) falls, Morton's Neuroma diagnosis, 2 Stem Cell treatments into my foot (ouch) and 2 surgeries with fusions in my left 1st and 2nd toes.
Heat started to bother me, our daughter (who is a hospice nurse) finally said "we are making an appointment with a Neurologist". He tested my blood, no antibodies there, lumbar puncture and there they were! Finally, an MS Dx at 63 for PPMS. Oh yea, I forgot about my 2 cousins with MS and a great grandmother (all on myMother's side} who they thought had a "Stroke" at an early age. No, I think it was MS too. One cousin just gave up and has already died, the other is wheelchair bound.
A really good medical history might have helped, but as usual they often make a Dx and then look for reasons why. Doctors are only human but they need to look at the whole person not just one body part.
I'm on Ocrevous twice a year since 2018 when it was approved for PPMS, and now using a walker and wheelchair for longer outings. I need to take frequent rests and the fatigue is the worst. I do take Ampyra and Amantadine also to keep walking the best I can.
My plan is to keep on, keeping on. I.m 67 now but it took way to long to Dx and start a DMT. PT and OT really help, but my massage therapist makes me work the hardest.
MSG

I have a known pituitary tumor for which I have Brain Scans with/without contract every two years. So much was answered after my scan in December of 2020. It revealed changes in the, apparently, existing demyelination of my brain. My endocrinologist referred this to my existing neurologist who referred me to a Neuroimmunologist. After a battery of tests, including a spinal tap, I was diagnosed with Radiological Isolated Syndrome in early March 2021 with the expectation to transition to PPMS within the next few years. I too had become intolerant of hot weather, which I used to adore, and suffer from fatigue near constantly. What the writer described about going to PT for a lower back issue sounds like what I went through last summer. I was told by my Physical Therapist that I had literally failed PT for my right hip/back issues. The numbness down my right leg and into my right foot can be frustrating and enough to disturb sleep. Yet, I’m still waiting for the neuroimmunologist to transition me to full PPMS. In the meantime, I try to keep comfortable.

Wow this is just kind of my scenario! Left sided weakness and thought I had a stroke and was 55 and going through menopause! Long story went to neurologist for my seizure disorder and doctor was like wow something is wrong waited 6 months until I was diagnosed with PPMS

What a frustrating time for you Stephen, hope you've had time to grieve the diagnosis and look towards working to the best of your abilities and continue to enjoy every second you have on this earth (you sound like a strong capable person). Unlike you I was diagnosed with T1 Diabetes at age 7, MS at age 21, Thyroid issues at 25 and Coeliac Disease at age 38 .... I am now 55. Having been diagnosed early has taught me to live with all of this as if I was born with it ..... I live by 3 actions: ACCEPT what is happening to your body, ADJUST what I need to do in order to manage the disability and ADAPT those adjustments into my everyday life, in order to keep enjoying life at the best of my ability. Best of luck moving forward and dont look back ... yesterday is gone and tomorrow is your future :):):)

Are you on any medications for the MS?

I've had a similar experience but issues in my case were with my feet and legs. Started with numbness in my toes and over time progressed to my legs and well as lower back pain. My primary care doctor didn't see any issues on a lumbar MRI. I saw 2 neurologists and a neurosurgeon with no results. Dealt with it for about 9 years. Woke up one morning with no feeling or sensation from the waist down. Went to a second neurosurgeon and he ordered an thoracic spine MRI. Spent 5 days in hospital getting high dose steroid treatment. Received RRMS diagnosis 3 months later. I was on Tysabri dmt and now on Ocrevus.

I was in my 50's when I told my doctor my balance was off and I was having trouble walking straight. He sent me to a doctor who tested me for peripheral neuropathy and said it was normal. His diagnosis was that my shoes were too pointy and they were throwing me off balance. My next doctor told me that my back pain was facet joint syndrome. Every time I complained of a new problem, she told me it was my back and prescribed fexeril. I made an appointment on my own with a neurologist and he ordered MRI's He told me there were lesions in my brain and spinal cord and I had PPMS. I was 65. Now I am 71 and am doing pretty well (except for the broken plateau fracture in my knee and the plantar fasciitis in my foot}.

It’s nice to read everyone’s experiences with MS. I was diagnosed with PPMS a year ago. My first sign came around 2005, while living in Canada. My doctor and I were fishing around for a arthritis diagnostic. I had a lot of joint pains and stiffness, headaches, tired with often no energy, and balance problems. I did see a rheumatologist but I never got a 100% diagnostic, as not all my symptoms were part of arthritis.
Moving forward, I moved to California in 2017, with my son and husband. At this point, I was falling down when going for walks (I was starting to be embarrassed when it happened), to a point that I stopped going outside. The muscle spasms were increasing, I had burning sensations in my legs, arms and hands. I also broke an ankle as I lost my balance, turning around.
So in early 2021, I saw a new PCP and she sent me to a rheumatologist. Which this one made me an appointment to a neurologist as she was convinced my symptoms were not related to arthritis (did a MRI that only displayed issues in lower back). Within 2 and a half months, I had a EMG, 3 MRI, and a lumbar puncture and the diagnostic of PPMS.
I am now 57 years old and learning to pick my battles in my daily life. So far, I’m doing good with a cane, when moving slowly in public, as my brain doesn’t adjust well with the changes around me. I’m on Ocrevus, 2 infusions per year.

Very similar, starting with cold feet in 2007. Went through multiple specialists trying to figure out, until Cleveland Clinic visit in 2015 with better MRI machine defined MS. Have never had a relapse, so it is PPMS. I have tried three DMT's (including Ocrevus) and felt they all made things worse and did not give them more than a year. Neurologist suggests that perhaps MS was progressing and the DMT's just were not stopping it. Having been off any DMT for three years, agree with that suggestion and about to try another. But just wanted to share that I have been on Wahls Diet since 2014, which is a pain, but I believe has been helpful. Best wishes to all in keeping a positive outlook!

I was diagnosed in 2009 at the age of 60, now aged 73 and things are as described by you all. I receive no medication except from Fampyra. Here in Denmark they do not give Ocrevus to folks above 45 of age. Is that the same procedure in the US I wonder?

Thank you for sharing this informative post. I am very interested in any information about trials, treatments, medications and or therapies for someone with PPMS who is primarily bed ridden.

Thank you!

No Mr. Hansen, that is not the same procedure in America... thank God! I am currently 66 years old. Last July at the age of 65, my neurologist diagnosed me with MS. Two months later I saw an MS specialist and he narrowed it down to PPMS. I received my first half dose of Ocrevus in October, my second half in November, and my first full dose this past May. No problems with the infusions. Won't know if it is helping until we see the results from my upcoming MRI in a couple months. I commend Genetech (the drug manufacturer) for all of their help and support in getting me started with Ocrevus. They even set me up to receive my infusions at our local hospital rather than having to travel 100 miles away to the nearest infusion center! I wish you the best with your treatment, sir.