My Progressive MS Moment of Truth

I find the comments in this article more related to what I deal with with my progressive MS then any other that I have read. Thank you for your input. I have learned that I need to forecast my future sis symptoms because it's only going to get worse if I plan for now I wind up having to replan. If I act as if the symptoms have already come like now I'm in a wheelchair I do better. It might not be what I want to hear but it's what I need to know thank you

#MS truths as its so corrupted .Dr. George Ebers, one of the world's top multiple sclerosis researchers, exposes the upsetting relationship between the pharmaceutical industry, neurologists and MS charities. https://www.youtube.com/watch?v=i0m_isndqc0 The system is all broken everywhere in the UK concerning #MS No one at all is doing anything at all about #MS truths because no one cares who should be doing sadly.

It would be nice if Doctor's would give it, like it is, or will be. I am so tired of doing research. My eyes blurr after an hour. I have progressive. I asked my doc what type she thought I had. She said she was not sure yet, but she thought it might be remitten progressive. I not sure if remitten was the right word. When I heard progressive, I could not remember anything else she said. I got diagnosed in August, I turned 58 a few days later. She showed me my MRI and it was loaded full of lesions. I knew something was wrong about 10 or 15 years ago. It started when I could not hold my urine or bowels. My eyes got so bad I could not see the person's face standing in front of me. I had so much head pain, swelling, heat in different parts of my body. pricks in my feet and toes. shocks up and down my back. No doctor could tell me what was wrong. I had a few mri's done and none showed lesions.I did get diagnosed with Fibromyalgia and IBSD. So, I settled with that. I started getting full body jerks, mild in 2015 and didn't think much about it. My sister died in 2016 and I thought I had a nervous break down. I could not stop shaking and my doctor put me on Nerve pills that took care of the shaking, for the most part. I kept falling up my stairs as I could not life my legs up to make it. I could not keep up with cleaning our 2400 three story home. We sold it and bought a much smaller home. No stair's. In august, I had a bad spell with the myclonic jerks. My head whipped back so hard and so fast I thought my head was going to break off. I called my Nero, and after a lot of tests they found I did indeed have MS.. btw, I kept telling my doctors I had MS but my mri's did not show that I did. I did find an article that said there are different ways of doing MRI's. To check for MS, they have to do small slices. So, If they would have done this years ago, I might not be progressive and using a walker right now. I went from walking normal and now barely walking with a walker in a matter of months. I told my husband, I think it is time for a scooter, he said no. So, I spend my time in bed or on my computer in my comfy chair. I sleep most the day now anyway. I believe I have primary progressive. It is life changing and It would be nice for doctors to prepare us for what is to come next instead of the deep dread of what is coming next! God bless all that are reading this and are in the same place!!!

I have secondary progressive, you made my day a little better(sobering)!

Nail on the bleeping head my life lately age and symptoms time to cowboy up and accept my new life and move on doctors try and say I'm wrong but after your article I no my fate always head held high

My first symptom occurred in a university library when I was 27 as I was looking out the window. I saw two horizons. My husband and I went to a doctor. He said it was all in my head. I knew it was but not in the way he meant. Over the next years, maybe 20+, my husband and I worked hard to replace physical activities that "disappeared" with equivalent activities by devising different physical activities to practice addressing the deficit. And that's the way it went for years, literally, a waxing and waning of capacity. Then
when I was 66 and teaching at my third university, I exited an elevator early in the morning and "fainted". When I came to I crawled to my office, called my MD who said I probably had a stroke, but to get to the radiology dept and get an MRI. I did. The number of white matter and subventricular plaques was remarkable and the radiologist said it was probably MS.
After that point and for several years it seems everything physical I did devolved into an effort to try and do it without much success. Nobody recommended a drug as there wasn't much big PharMa interest in MS or even knowledge about it. Nobody seemed much interested in my complaint list especially about fatigue.
....Finally this year, my 79th, as my ability to simply walk became impossible I saw the neurologist at my institution who suggested Ampyra (dalfampridine) and it has worked a miracle. He also said I have systemic progressive MS now. That does seem to be the case. But like you all have said, he cannot promote a prognosis.
I am now almost 80 years old. Due to the extreme fatigue and being expected to do more than I should or even can mostly, I have made out my will. I am slowly dispersing my belongings. I am, however, still able to paint, so am doing much of that to my greater pleasure.
I have one daughter who understands my frustration and acceptance of the roller coaster. But not the other two. I have accepted that people really have difficulty understanding what they themselves have not experienced. That is O.K. as I do not wish this on anyone for any reason or anytime.
I wish you all well and I hope you consider complementary and alternate therapies to include mindfulness and mediation, massage and accupressure and accupuncture. Read as much as you can (Why is blurry vision a constant, anyway?) and listen to wonderful music. I do this as I can afford. It is wonderful, I have to admit.

I just want to thank everybody for taking the effort to write out your feeling, and still not indulging in self pity... I am struggling with emotions with each new symptom,and and at my wits end trying to be positive...

Your article and all the responses make me realise that I am not alone...and to find the strength to be positive.

Thank you so much.
Rashmi Jose
(India )

Your reflection speaks to me. I won't go into the long, long tale of attempting to find out the problem. It is enough to say that I was diagnosed with MS eight years ago, at age 70. The progression of MS afflictions has progressed slowly (for which I am very grateful), but given my age and the nature of MS, I do not know what the future holds. I would like to continue where I am, doing what I love to do, staying physically active, but is it wise? I don't know the answer. Due to balance/gait problems, I slipped and broke an ankle in early September, nearly 6 months ago. I have since added a handicapped ramp to access my house because stairs are very difficult and probably unsafe at present. Should I make other changes? Should I relocate? Will I ever return to walking without assistance? Will my MS symptoms continue to slowly erode my independence? So many unanswerable questions.Is it any wonder why those of us with MS may experience depression or anxiety?

Literally the best column describing my life with PPMS that I have read! I was diagnosed in 2014, a month after my 60thg Birthday. A roller coaster ride is the best way to describe it. I live with my youngest son, his wife and 2 daughters. They are my God Sent Angels. My daughter in law has read enough about the illness to at least be empathetic about what I’m dealing with. My granddaughters have had the blessings of high intelligence and the reading, with Grandma, about MS. We believe my son is still in a peculiar state of semi-denial. Although he has driven me to some medical appointments and has not demanded much of me around the home, he has never spoken to me or asked any questions about what is happening. It makes for a very strange dynamic around here. I pray the best for you, all of your readers and myself as we deal with the uncertainty of our futures. Enjoy and LIVE each and every day!

Your article is inspiring and helpful. Thank you. I was diagnosed with primary progressive MS ten years ago at 42 years old. My symptoms had been developing for about 8 years by then. At first it was left leg weakness (very faint), then foot drop in my left foot and increased leg weakness, bladder issues and fatigue. My right leg is starting to weaken also. I'm now 52 (53 in a few days), and my mobility is the biggest hurdle. I use a cane or two walking sticks whenever I'm outside. MS can be depressing. I just don't want to think about what might happen down the road. But as you say in your article, I must. I'm single and have no family close to me. So I feel like I'm fighting this alone. I'm still working and am seeking accommodations at work, which can also be scary. I teach, so my job is not particularly physical although it can be mentally taxing and fatigue does get to me at times. Still, I want to work as long as I can. Your article confirms that I need to be proactive. But there are so many things I still have to figure out: (1) what do I need to do to prepare for life in a wheel chair; (2) what other symptoms may come up and what types of adjustments must I make in my life in terms of living arrangements, (3) what will it look like for me if I must stop working and go out on disability leave? Who should I speak with to get answers to these and other questions? The thing is I'm not sure who to ask. I found an MS support group in my area and I attended a few sessions but when things got busy at work, I stopped going. I want to start attending again. One big problem I've battled with is not exercising (to the extent I am able) and eating too much. Food has become my one comfort. But I've gained a lot of weight and need lose it but it's so hard. I want to have it all together but there is so much about living with MS. I just pray things work out and that I do the best I can.

I feel compelled to comment even though I usually do not. Because we all experience different progression of this disease I will only comment on what I do.
I have primary progressive MS and had since 2004. I have come to realize early on that there is no cure. It has a profound impact to get this understanding because for me it meant putting all my mental effort on finding ways to make life easier going forward. A few comments.
1. A chair lift is $5000.00 and this is one I can use standing on the foot rest and not using the seat. It is more of a escalator! Much cheaper than adding on to our house!
2. I have a regular power wheel chair ($8,000.00)that i no longer use. I instead have a travel 3 wheel scooter ($800.00)that can be taken apart in 45 seconds and fits in a trunk. It is better in the house maneuvering around.
3. Bought a handicap vehicle ($45,000) that was not new. It is really easy and put hand controls ($225.00) on it that can be taken out if I need to drive another vehicle. I could drive using a wheel chair if needed.
4. Did Stem cell using my own stem cells from my stomach. ($45,000). It appears to have stopped my MS progression based on MRI comparisons. It did not cure the MS but it did stop it and eliminated all bladder issues and improved strength. Ocrevus is thought to stop MS progression also but was not available 2 years ago. Stem cell treatment was all out of pocket and Ocrevus has insurance coverage. Ocrevus is ($140,000) for just 2 infusions? What the heck!
4. I stretch out 2 times a day. Really helpful! Also, have a really good massage therapist every 2 weeks. Cheaper than a lot of things.
5. Became my own medical advocate. I was sick of appointments that only assess my symptoms. I know what they are so very little value.
5. Got a hip flexor belt and straps ($225.00) that helps a lot for foot drop. Have gone through 2 walk aides ($4500.00) each. Loved it and helped a bunch but they do not last forever if you are active. May get another but all out of pocket cost.
Take home message is to be your own medical advocate, concentrate on things you can do today to make life easier, stop worrying about the future which only causes stress. You are more likely to be in a car accident than die from MS. There is no cure for MS today. When I accepted this it allowed me to live again.

The most effective treat for SPMS & PPMS is HSCT. Although it is certainly more effective when done in the early RRMS stage, it is effective on the progressive forms of MS too.
www.kickinms.com

Kevin Keplinger

What is HSCT?Husband has SPMS for 40 years- started having gait, balance , urinary probs this past year.
Now problems walking.

I came across an inspiring MS story on
www.ebvms.com/audreysstory.php

Lynn Neal is 100 correct. Except the system is not broken but intact, run by "the pharmaceutical industry, neurologists and MS charities" who want people to think MS is an auto-immune disease, so they have an excuse for the immune-suppressants, that destroy your immune system and leave you to open to all sorts of infections, viruses and bacteria that it is too weak to fight. This takes time and happens over the course of a year or so, so it you are taking any immune suppressor you should consider the down-side. MS cannot be an auto-immune disease for any number of reasons; the most obvious--IT FITS NONE OF THE DEMOGRAPHICS. It is the biggest fraud perpetuated since the cigarette era when cigarette manufacturers knew smoking would increase one's risk of cancer five fold!
Also you should know the U.S. put into law beginning in 2013 that drug companies had to report each and every payment to a U.S. MD, and the “reason”—whether 13.95 for lunch or 15,515.00 for “consultation.” Centers for Medicare and Medicaid Services (CMS) has a website anyone can go to, put in the name of an MD, and see, year by year, if and how much money he/she received from 2013-2018 and its purpose. You should check your neurologist if he/she works in the U.S. (Canada and the U.K. does not have reporting requirements.)
https://www.propublica.org/datastore/dataset/dollars-for-docs

Moreover the U.S. has a law taking money from a drug company no matter how small, and prescribing their drugs to patients if they are on a federal program is a felony!
Generally known as the Anti-Kickback Statute, Federal law says the following: Whoever knowingly and willfully solicits or receives any remuneration (including any kickback, bribe, or rebate) directly or indirectly, overtly or covertly, in cash or in kind. . . in return for purchasing, leasing, ordering, or arranging for, or recommending purchasing, leasing, or ordering any good, facility, service or item for which payment may be made in whole or in part under a Federal healthcare program, shall be guilty of a felony. . . .”
Similarly, whoever knowingly and willfully offers or pays any such remuneration in return for the facility’s business could also be committing a felony.
Also the U.S in 2013 put into law that drugs companies have to register studies and report findings to date after one year. Since that time, only 20 percent have done so.

But you don’t have to be a victim. Find out as much as possible about MS and get a second opinion. MS is incredibly hard to diagnose and one neurologist will say it is Primary Progressive (PPMS) another will say it is (Relapsing Remitting), and another will say you have mononucleosis and refer you to that doctor.
Moreover PPMS and RRMS ARE DIFFERENT DISEASES! But the medical establishment refuses to admit it, so they are lumped together, research is totally confounded, and after 100 years we know nothing of any value.
As for SPMS, it is not an original diagnosis, as it is a “transition” from RRMS. Why would so many cases of RRMS become Progressive? It should be as obvious. It is none other than the immunosuppressant drugs individuals have been given. If they are on them long enough, their immune system will begin to fail and all sorts of new and severe conditions or illnesses will result. Returning to their neurologist, they will be told, that, unfortunately, they are one of the cases that transitioned to SPMS—a pre-existing category making it convenient for practitioners to rationalize the course of the disease. Virtually every patient, of course, is ignorant of the truth.
 

But you can Be proactive:
(1) Check if your neurologist has received over $50,000 between 2013-2018 from drug companies—what companies and what drugs? If so, fire him/her!
(2) Pray…and my prayers are with you.
(3) If you are overweight…you need to lose as much as possible regardless how hard it is.. you have no option, if you want to live as long as possible.
(4) Pray…and my prayers are with you.
(5) Work out…start slow and build it up. It will do a for your nervous system. (I heard good things about the MS Gym. http://www.themsgym.com/
(6) Pray…and my prayers are with you.
(7) Meditate or do something like T’ai Chi which has been shown in studies to reduce pain significantly

Finally while each case is different, my guess in reading the blogs above and how disease has progressed is that around 50 percent who think they have PPMS because that is what their neurologist told them, actually have RRMS.

As far as Lynne stating the establishment and drug companies do not care about you, Mike cares, I care, and most important God cares! They will get theirs—sooner than they think!!

I was diagnosed with PPMS 11/2019. About ten years ago My entire body went numb. I went to the emergency room was sent away told I was having an anxiety attack. I went home waited for improvement for 5 days no improvement I went back. They sent me to neurology I had an MRI. I was told that I had migraines. I never had headaches. My symptoms improved on their own. Over the last year I began having problems walking. I went to my primary care in March and she sent me in all the wrong directions. I finally just on a whim made an appointment with the neurologist I saw 10 years ago and he did another MRI and a lumbar puncture. He diagnosed me finally. During those years I gave it no thought. After the diagnosis everything clicked. I realized I've been having symptoms for the last few years and just kept pushing through it. I broke my ankle and had to have surgery 2 days after my diagnosis. I use a Walker right now. I can't do much of anything without assistance and doing the laundry one of the only household chores I can do will exhaust me to the point I needs a 4 hour nap. I am having my 1st 1/2 dose of Ocreves in a week. My job is pretty much taking my position from me. Should I be fighting for my job? Am I going to be able to do the job if I do? I'm so confused and conflicted. I just feel like I'm being punished by getting sick and for getting sick.

Hi Mike,

I realize this post was made some time ago now and you might not be responding to comments left here anymore. Like your doctor, my neurologist initially did not know how to label my condition. I was prescribed a common DMT for RRMS, so I assumed that was the variety I had. But as time went on, I realized that I never had a relapse/remit event that everyone else in the MS facebook groups were going on about, so I became suspicious. A MS clinic, more recently, gave me the diagnosis of progressive MS.

But here's my question to you: looking back, how many years prior to 2013 did you have symptoms that could have been MS-related, and do you think that that era of your life was when you were in a relapsing/remitting phase of MS? Or perhaps more to the point, does your neurologist think that you have PPMS or SPMS? I may have follow-up questions, depending on your answer!

Hello, Pamela,

Thank you so much for reading my column, I appreciate it (I no longer write for MS News Today, simply can't keep the pace due to MS complications). My symptoms really began with tingling hands in 1994, and yes, I believe that was the beginning of SPMS. Hope that helps!

I’m 51, I live in Indiana, since being diagnosed in 2017. Things are unsettling,lost sister in 2006 from complications of MS. My Ms Specialist says I’ve had it for about 15 years. 3 strokes within a week led to diagnosis. Paralyzed on left side.Nothing has gone into remission as they say ,all my lesions are stable but active and have been for the last two years. I have been diagnosed also with Severe Stenosis in my spine, I have lesions on brain,therasic and spine. I have all over heat issues, i stiffen up pretty quickly and my hip and pelvis on the right side are deteriorating. I do my best to try and move as much as possible but feel it’s all coming to an end. Insurance isn’t wanting to help me get electric wheelchair I need . I feel like I’m loosing my battle everyday.