MS In America 2017

Living with MS is More Complicated Than You Think – Results from MS In America 2017

Multiple sclerosis is an incredibly complex condition, not only when it comes to the science behind it, but also what it means for living with it on a daily basis. We wanted to know more about life with MS, so we asked our amazing community members to share their experiences of what it is like living with this condition. For the 2017 MS In America survey, we gathered insights from 5,311 individuals who are currently living with MS. It is our goal to better understand the symptoms, management, and daily impact that MS has on those living with it, and also understand what it means for people who are caregivers living with MS.

Being mis-diagnosed is more common than you think

Many people are misdiagnosed with something else before they are finally diagnosed with MS. Some of our community members were diagnosed with conditions like depression, migraine, fibromyalgia, psychiatric disorder, B-12 deficiency, or chronic fatigue syndrome before receiving a diagnosis of MS.

MS is associated with SO MANY symptoms

Fatigue, numbness & tingling, and cognitive dysfunction are all well-known MS symptoms that are experienced by the majority of our community members, but the list of symptoms goes well beyond just those.

MS Pain is Real

More than half of our community members who experience symptoms said they experience some sort of pain associated with their MS, and MS pain can have a significant impact on so many aspects of daily life. Pain can impact your sleep, ability to walk, recreational activities, and mood.

Troubles with Treatment

While there are many more treatments available today than there were even 10 years ago, it is still challenging to find the right one for you. MS is different for everyone, so a treatment that works for one person may not work for another. Further, every treatment has risks in addition to benefits, so taking those into account can make it more complicated to make treatment-related decisions.

MS has a Real Impact on Daily Life

The impact that MS has on a person’s day-to-day is broad – it can impact your ability to sleep, work, and travel. MS also impacts overall quality of life, relationships, and even sexual function.

It’s Not Simple

Life with MS is anything but simple. We are so grateful to all of our community members who took the time to answer our questions and participate in the 2017 MS in America Survey. There’s only so much that can be learned about MS from a textbook, so hearing from real people who experience day-to-day life with MS is so important in bettering everyone’s understanding of what it means to live with MS.

Comments

View Comments (64)
  • christophrighter
    2 days ago

    I’ve been talking with a lot of doctors over the last couple years about what’s going on with me. I don’t have a diagnosis of MS but, my symptoms fit all of the clinical symptoms of MS. The thing is, it fits it to perfectly. I am also experiencing neuromuscular problems on top of the MS symptoms. Is this common?
    All of my blood work came back great. MRI w/so contrast of the brain showed no lesions. CAT scan of my chest came back fine. My lungs and heart are being affected. That’s why the chest scan. My doc has referred me to Barnes-Jewish in St. Louis for a small nerve biopsy. I’ve been asking for a spinal tap but no one seems interested in doing one. I have answers of what it’s not but, I can’t find anyone to tell me what it can be. Is the small nerve biopsy the right way to go on this? Why the small nerve biopsy before a spinal tap? Is he leaning towards neuromuscular with this route? I have been going at this for 10yrs now and I need some help.

  • yeahme2
    4 weeks ago

    So…some of the symptoms I’d blamed on other things. The bottom line, however, would’ve been if I’d gotten a brain MRI at that time?

  • JurdMcBurd
    2 weeks ago

    “I don’t think we need to take an MRI of the brain, this is just a case of the nerves being overactive.”

    – Neurologist at an ER, one year prior to my diagnosis, where they found 3 lesions on my spine and two on my brain.

  • Colleen Fegan
    1 month ago

    ALSO, I find it very interesting that the info in this study was a compilation from 5,311 people. If you look at data from the MS Society, they say that there are way fewer people in the US diagnosed with MS. It’s a wonder that so few biologics are developed by big Pharma if the population is significantly higher than predicted.

  • JurdMcBurd
    2 weeks ago

    https://multiplesclerosis.net/what-is-ms/statistics/

    I know THIS website lists 400,000 – however, I can’t find what you refer to on MS Society.

  • Colleen Fegan
    1 month ago

    There’s a complication that I have suffered from that’s kinda funny in retrospect…I watch carefully for it now.
    I can no longer drive so do much of my shopping online. I was receiving so many multiples of things! I realized that I have a particularly nasty spastic muscle in my right pointer finger. It’s a FAST trigger finger and it would hit the quantity key so fast I didn’t notice! My payment info is IN Amazon to save me from having to enter it every time. You get the picture….hahaha

  • yeahme2
    4 weeks ago

    I’m new here. What you said made me think of something that’d happened recently with my new computer mouse, no cable. (I’m left handed) I was going through a list of things and found that my left finger kept hitting the mouse so often that I’d have to lay it on top of my next finger so that I wouldn’t have to constantly erase extra whatever-was-in-that-space. Huh, MS could likely be the cause. Thanks for sharing.

  • Luannjl
    2 months ago

    I havent been diognosed with ms, but I have all the symptoms. What I want to know , is there a doctor that specializes in this condition like a neurologist.
    thanks very much

  • Colleen Fegan
    1 month ago

    Yes, a neurologist is who we see, they can diagnose and treat, but they can make the same errors as non-specialists unfortunately. There are Neuros who specialize in MS.

  • Pinky0013
    3 months ago

    I have alot of trouble with what ive been told is called the MS hug they are so painfull

  • yeahme2
    4 weeks ago

    What is an MS hug?

  • ShelbyComito moderator
    4 weeks ago

    Hi @yeahme2, thanks for the question! Here are a couple articles on our site that explain the painful MS symptom commonly referred to as the “MS Hug”: https://multiplesclerosis.net/symptoms/ms-hug/ and https://multiplesclerosis.net/living-with-ms/everybody-love-a-hug-but-not-ms-hugs-what-are-they/
    Thanks for reaching out and being a part of our community!
    Best, Shelby, MultipleSclerosis.net Team Member

  • Ken
    4 months ago

    I agree with many others within the forum…the compilation from the survey rendered some outstanding information. I was diagnosed with Remitting/Relapsing MS back in 2001 Unfortunately, MS had a significant impact on my United States Air Force (USAF) career. My job as an aircrew member came to a screeching halt and I was nearly medically discharged from the USAF. Thankfully, I was allowed to continue in the USAF with a career change and retired after 25 years of service. I am currently on my third MS disease modification medication and have been doing fairly well until a couple of years ago when I was forced to stop working completely due to numerous MS related complications. I thoroughly enjoy the articles, personal experiences, and especially the polls of fellow MS patients on MultipleSclerosis.net; it is nice to know there are others that understand the utterly unique conditions we endure daily.

  • Kelly McNamara moderator
    3 months ago

    Hi Ken! Thanks for the kind words and for being a part of our community! Having a group that is so supportive of what one another is going through is what makes the community so great. So we can’t thank everyone enough! – Kelly, MultipleSclerosis.net Team Member

  • Carol
    4 months ago

    This is a great article. I’m glad that it stressed that there are so many symptoms and feelings that we go through all day every day. Living with MS is complicated.

  • Kelly McNamara moderator
    4 months ago

    Hi Carol,

    Thanks for the kind words! There are so many symptoms and feelings due to MS!!!

    Best,

    Kelly, MultipleSclerosis.net Team Member

  • Kimberlybthatsme
    4 months ago

    #Truth

  • ElseN
    4 months ago

    Please research Pam Bartha, former sufferer of MS and its symptoms, and allow the fruits of her experience and knowledge seep deep into and throughout this website. She is “coaching” people to wellness. The condition is caused initially due to dysbiopsis — an imbalance of good & bad microorganisms in the gut. When the bad bugs are running the show, their infections wreak havoc on our intestines, causing inflammation, leaky gut, poor nutrition assimilation, and an immune system that is trying to tackle them but is being outfoxed in many cases.
    This is HOPE!! Many people are getting WELL!! Don’t suppress the truth. This woman is working with top scientists and researchers and PHYSICIANS!!. Google her, watch her on Youtube, and read her book, “Becime a Wellness Champion.”

  • ElseN
    4 months ago

    *Become, that is

  • Kelly McNamara moderator
    4 months ago

    Hi @ElseN. While there is no scientific consensus on the cause or cure for MS, we’re glad you’re feeling better. You may also be interested in this page on https://multiplesclerosis.net/causes/. Thanks for sharing. – Kelly, MultipleSclerosis.net Team Member

  • Harleydog1
    5 months ago

    Every day is different. I would fall too, it’s hard to except it. My falling has got better.i just make best of it sometimes I even laugh at my self.

  • Harleydog1
    5 months ago

    I know the feeling. It’s terrible.

  • Dorry
    6 months ago

    All the symptoms you describe I have experienced and yet I am being treated for osteoarthritis. It is a joke I turn up at the clinic and G.P. surgery and if I don’t accept their pain killers because I have an intolerance to most medications making me feel more ill the doctor than shakes her head and says I don’t know how to help you. When I say I may have a circulation problem because I have severely swollen legs and feet. She nods and says I don’t think you have a circulation problem. then why doesn’t she do a doplar test or any test that measures the blood flow in the legs to eliminate that problem. Seriously fed up with the medical profession.
    My husband had weakness in the legs. I went on the internet and it said. This is serious (like a red flag to a bull) get help immediately. The doctor treated my husband more for a bad back and by the time the week got on my husband was sleeping all the time and he could not walk. He fell. The ambulance woman said if he had fallen she would not be able to pick him up due to health and safety.
    My husband was then transferred to another hospital and put in the icu. He was very ill and ended up with ENCEPHALITIS. He could have died. The Neuro said “Why did you leave it so long to come for treatment? I was angry. It was up to the G.P. to do his job. I had a fight on my hands and mounted a battle to the top. The G.P. told lies and I pursued the matter to the highest Healthcare Commission and the G.P. came to our home and apologised and took responsibility that mistakes were made. That is all I wanted. For him to take responsibility and change the way he worked so no one else would have to go through what we went through as a family. Thank you for this website and for your support and understanding. I feel better already knowing I am not alone in what I am feeling even though 100% of the experiences described here I experience also even if it is not diagnosed yet. I feel I am in a family who understand.

  • ElseN
    4 months ago

    There are many missteps and just plain ignorance in the medical profression. They help in some respects, and with some conditions, but MS? Forget about it! Just drug pushers for Big Pharma. I don’t buy their shpiel anymore. I want to get better. Find the cause!! It’s not complicated! Doctors discovered 30 years ago ALL chronic illness begins with the intestinal biome. MS is a chronic illness. So why hasn’t there been research until very recently with regard to intestinal health? Three guesses: no money in it! (Repeat 2 more times!) You have to take charge. Go to Youtube and search “MS is caused by infections.” Educate yourselves. There is hope but if you think there’s a magic pill out there — forget about it! Getting well is going to take money, energy and commitment. It’s hard work. I am trying. My bladder issues resolved with a week. One week!! I am sticking with common sense and results. You should consider doing the same. Good luck!!

  • PeggySargent
    6 months ago

    MS stinks. Having MS, but not enough to show in short-term evaluations is even worse. My old doctor understood. My new one here thinks he knows all and to “make sure” has decided I need to give countless vials of blood (you know it’s bad when the phlebotomist says they’ve never taken so much blood from anyone at one time), just to see what has been “missed”. All tests are where they should be, especially since I’m taking supplements for vitamin D.

    I don’t want it to get worse, but sometimes I wish people would see the fact that my days are littered with pain and issues – I’ve just managed to work around most of them so far. And I am beginning to hate my doctor. Going to his office stresses me out. Dealing with his staff drives me crazy. They turn a simple request into a three-ringed circus. I will get a new one soon, but pray I don’t have to go through this again.

  • Carol
    4 months ago

    What an experience you went through. I’m glad you have decided to get another doctor.

  • 1x90etr
    10 months ago

    Has anyone ever heard of MS Burnout? I am almost 55 and I’ve been diagnosed since I was 40. My lesions have disappeared with constant proactive health care, meditation, daily exercise, eating healthy, adding anti-oxidants to my diet, and eliminating inflammatory foods such as dairy. My Neurologist is on the side of “science” stating that he is surprised if anyone with MS is permanently disabled…my original Neurologist stated that I would be permanently disabled. I am being questioned as to whether I still “need” disability and they are suggesting that I can return to a “sedentary full time job?” Doing what???
    My career consists of teaching for almost 20 years and waitressing for 15…to put myself through college and grad school. ack!

  • MsGelfling
    9 months ago

    I would be very careful about going back to work. You may not be as better as you think. Go slow, start with an easy job, and see where you can go from there.

  • Carol
    4 months ago

    Absolutely! That’s crazy that the neurologist would be surprised if anyone was permanently disabled by MS. Ah, a lot of us are that way, unfortunately.

  • itasara
    1 year ago

    I just happened to see this article and comments. I have known about my MS since I was 57 years of age. I am now 69. I have been on Copaxone since about 4 months after diagnosis and am still on it. I have done a LOT of reading and heard lectures about MS. I have a nursing degree ( but have not been active for years-out of choice not because of MS which I knew nothing of at the time,( and my husband is a radiologist so sometimes we watch lectures about MS so he can also get CME credits and I can find out what is the latest information. The more I read and listen to, the more I think there is so much the medical community needs to know about MS that is not known. Everyone is so different in their MS journey so one treatment or diagnosis is different for everyone. My doc has not asked for a repeat MRI since I was diagnosed and he says it wouldn’t matter because my I am doing well and he wouldn’t change anything no matter what. On the other hand I saw a lecture today with my husband about how important tracking the disease on MRI is and there are new 3-D MRI’s available (where I’m not sure) that can give a better idea of how of if the disease will or if it might be progressing. This is difficult to track if one like myself doesn’t get regular MRI’s. I probably had MS long before my dx but really had no idea or clue at the time. 3 years before my diagnosis, my daughter (almost 20 at the time,) was diagnosed with MS. Today she has doctors that say she no longer needs the medication and needs a couple MRI’s a year to make sure she has no more lesions or any changes. She may be in some kind of remission but she says she is basically cure. I wonder how many neurologists would agree with her neurologists or my neurologist? So if you don’t think MS is complicated, it certainly is! Is taking Copaxone keeping me from being disabled? Would I be in the same shape if I never took it? I guess I’m not willing go take that chance yet. Some symptoms listed here I might have, but nothing I can’t say is do to MS or getting older and none that are in my opinion disabling. My daughter was on Avonex for about 11 years and now is off medications by medical recommendation as I said. Is her MS sill working in the grey matter of her brain behind “closed doors” only to surface later? Who knows for sure? So much we don’t know!! Because I take a lot of OTC supplements has that helped me? Is there a connection between being on HRT all these years and keeping my MS at bay? Questions I don’t know have been answered.

  • jdarie
    8 months ago

    Take it from me… please! I have had MS 43+ years, I have now been diagnosed with SPMS. My MRI has not change much at all for 20 yrs but yet my symptoms get worse because it is a degenerative process with the old lesions. I was on on HRT for way to long! It has been verified by several huge studies that staying on HRT’s causes a two fold increase in breast cancer.I was diagnosed with Stage 3c Invasive Lobular BC (11 lump nodes involved ) when I was 60. The drug they put you on afterward has taken more of my life away then MS. It takes away rest of estrogen, makes All my MS symptoms Worse! I have hot flashes too! Please start decreasing your HRT, no study supports there use, for any reason, except for early in Menopause but only 3-4 years. I was a fool!

  • 1hirjrh
    5 months ago

    What are HRT?? I’m not familiar with that 🙁

  • Margot moderator
    8 months ago

    I’m so sorry to hear of your experience @J-darie ! Thank you for sharing with us. We always encourage those in the community to speak with one’s doctor about changes as all may react differently! We appreciate you sharing your experience. Best, Margot, MultipleSclerosis.net Team Member

  • jdarie
    8 months ago

    I am a retired RN also. And I knew risks of HRTs and other risk factors. I gambled with my life and lost.

  • 64vt2
    1 year ago

    Recently, at age 67, I was referred to the “best” MS neurologist in nh. I told her this is the last stop for me. She ordered tests like no one else. The MRI was a 90 minute challenge in self guided imagery! I made it! However, it opened up a whole new problem. I have an aneurysm, wide base at the tip of the basilar artery in my brain. She Expedited Me To Boston, Beth Israel Deaconess, Aneurysm Center. They Are Terrific. November 21 I Will Have A Stent And Coil Operation Thast Should SAve My Life. Now, My Question Is How Are THe TWo RElated? Does THis Happen With MS?

  • 64vt2
    1 year ago

    I am surprised pain was only 55%.

  • LuvMyDog
    1 year ago

    It took 9 years of going to several doctors before I found a wonderful, compassionate and highly intelligent specialist who diagnosed me with MS and took care of me for 23 years. He retired and I’ve never found a good neurologist since. Doctors who specialize in MS are few and far between. Most doctors have little knowledge of it and think pain or brain fog or fatigue is caused by something entirely different. It’s very frustrating and irritating and I’m the first one to tell them so! The majority of Neuro’s in my area specialize in sleep disorders, concussion, but not MS. I don’t even see a neuro. anymore but would love to find a good one.

  • Jesusfish5
    10 months ago

    I don’t see my Neuro anymore either. All he ever says is, “I don’t know.” Well, if you don’t know…please refer me on to someone who does!
    That was 2 yrs ago… I see my GP, he sees to my symptoms (I have PPMS, so I don’t need anything except muscle relaxers, and spasmotics+a pain med for something else. He’s been my Dr for 20 yrs – I’m not a number to him, I’m a friend. He cares and truly wants me to feel better. Good luck to you, and G-d bless!

  • Harleydog1
    5 months ago

    I would be running as fast as I could, I think it’s a money thing. That’s what went through for 3 years. Dr now is wonderful

  • jdarie
    8 months ago

    I am glad u have a doctor that cares! But with PPMS and some of meds they have now and constant research, I think you would benefit from a good neurologist. Do you live in a small town?

  • patti dorval
    11 months ago

    I have yet found a health care professional that doesn’t want to push me off onto specialist after specialist as to keep paying the clinic. I have stopped all medical treatment for the last 5 years but am now considering trying some form of treatment. I am lost though on how to find the perfect doc.

  • Navygirl1978
    1 year ago

    So glad to hear that my neurologist is NOT the only making me feel like all my symptoms are in my head/as he called it I am hyper focused on my body after being diagnosed

  • PatriciaGudin
    1 year ago

    So Happy 2 have found U! I was diagnosed in 1996,after 10 years of pain, misdIagnosis, doctors treating, and telling me there is nothing wrong with you, you just want drugs!!! I was actually HAPPY when I got a diagnosis, so I could finally get treatment. Now I know, in my mid-fifties, I ‘m not imagining new and/or worsening symptoms. GREAT!

  • Dorry
    6 months ago

    Hi Patricia I know how you feel by being mis-diagnosed and doctors acting as if you just want drugs. So Unfair! I am the opposite. I refuse drugs because I get all the serious side effects making me more ill. I make my own cough syrup and I take ginger and garlic minced add lemon juice and boil for 5-15mins and this is my natural anti-biotic. Recipes I got off the internet. I am on blood pressure meds which cause swelling of the legs. And guess what? this is one of my major problems. MEGA swollen legs and ankles. Nothing is being done for me. Doctors are a disgrace when they don’t address their patients needs. I am now starting to feel depression kick in and trying to fight this so I don’t go downhill. Thanks for sharing.

  • Jesusfish5
    10 months ago

    No darlin’, you’re not alone! I was dx at 48, am 53 now. Dx with PPMS though.I’m so sorry you’ve had to join the club, but I’m glad you’ve found some that are like you. I had 3 weeks in the hospital, and neurogy kept crossing MS off the list “because”of my age!! Did my own research, have it to them the next day with footnotes. Haha

  • Dorthy
    1 year ago

    This was very understanding for me, I have some of these problems with my MS.
    Thank you all for this info.

  • Kattrickle
    1 year ago

    I also take tumeric, with ground pepper from pepper mill. I need to replenish it almost out, I will tell you ghat I religiously took it everyday for about 2 months. I had better bowel movements, higher energy, brain fog not as noticeable, my joints we’re not so tight. I like the way if made me feel and will replenish, because I know it works. Try it and let me know how you feel, need to give it z month and a half or so

  • Dorry
    6 months ago

    Turmeric Is very good and has many health benefits that they now sell it in tablet form. but way toooo expensive. Only problem with turmeric is that you have to do some research if you are on medication as it can affect certain medications. Try a naturopath that is also a doctor and can offer you a balanced answer.

  • Jesusfish5
    10 months ago

    How much tumeric do you use? And in what? A tea? Or just as a speck with your black pepper? A little confused. But incredibly interested!!!

  • Kattrickle
    1 year ago

    It’s a struggle to move around sometimes when my legs feel like tight rubber bands with no give. It is something I have had to accept. I am a Capricorn, with German in my blood. I am head strong, don’t give up easy. But I am also human. I feel pain in ways a person that does not have MS. I live it every single day of my life. Problems holding my bladder. Issues from my boyfriend because of his lack of seeing his once girlfriend cable to jog, dance and just hang. It’s hard on him, which makes it hard on me. I am blessed that I was able to do the many things in my life before MS. I don’t feel totally deprived, but blessed for what I have. I hold on to the phraise,” I have MS, MS DOESNT have me

  • hugh1617
    2 years ago

    I went seven years with 3 different diagnosis. The time and money involved is maddening.

  • Jenn
    2 years ago

    Tsmith70 I totally agree 100% on what you have written! Neuro’s are a waste of money and I have always said they don’t know sh*t about ms or let alone anything else. My neuro is not happy that I am not taking a drug. I have been on Copax, Rebif (which caused me to go into a severe depression), tysabri,and the newest tecfedra (which I could not afford and got assistance by the drug co.) which did not last long. I told her I could not afford these new meds that she wanted to put me on, but I said no and I no longer wanted this poison in my body. She didn’t like that and said that basically there was not anything she could do for me, so I told her to get me an MRI and see what has gone on since I was off the tec, and been eating totally clean with no gmo’s, no processed food, only organic and I felt so much better. So after my MRI she sent me a letter stating that I show activity and to come in and talk drugs. Well still have not contacted her, we got the info about my MRI and it states no change, and so it just shows how much these doc’s want to just make money off of you. Big pharma pays these doc to prescribe! To this date I have gotten off many of the drugs I have been placed on including the antidepressent cymbalta (as I was never depressed) she def did not like me getting off this drug (cuz you know all MS people deal with depression) plus I was diagnoised with bipolar and again I am not. The doc that dx me as bipolar and depressed was my regular doc. not a psychiatrist ( this doc I found out she also gets payed by big pharma also) I have learned that only psychiatrist should only beable to dx a person for mental health issues. I told my neuro that I was not bipolar nor depressed but she will not listen to me, because all MS people deal with these problems. Infact the last time I saw her she asked about how my incontinence and I said I don’t have that problem (never have) and she looked at me like I was lying and wanted to put me on a drug. The only drug I use for my ms is weed for sleeping (because of my husbands snoring and spasms which are not very painful) and my organic food. These doctors are ripping us off along with big pharma.

  • LuvMyDog
    2 years ago

    I just looked at my emails, opened this one from MS.net, saw the first topic and the first two words that came to mine, NO SH*T !! The “editorial team” is preaching to the choir! I for one know all that has been said having lived or I should say, merely existed with MS for the last 35 years.

  • itasara
    9 months ago

    It is illegal for doctors to make money from prescription drugs. I don’t believe they do, but if you can prove your docs are making money from MS drugs you would have a huge lawsuit against them.,

  • joebic01
    2 years ago

    It’s a shame that treatment has to be so cost prohibitive even with help from non profit organizations. When does it become about the wellness of the patient and not the drug manufacturer? I’m all for capitalism however $75K a year, even $65K per year for the new generic is totally unacceptable especially for those of us who are on disability. This is sometimes worse than the disease itself. Maybe a financial study should be included with numbers in studies like this.
    I apologize for the rant and hope we can find a cure for this awful disease soon!!!

  • Julie
    2 years ago

    I don’t consider it a rant but a true fact that we all have to live with when we are living with MS. Even I was to decide to not be on one of the MS drugs, some of the meds my neuro has me on would be impossible to pay for without insurance. Even WITH insurance mine won’t pay for some of them.

    Back when I was first diagnosed, I thought doctors were there to help you and insurance was there to pay for our treatments and drugs. Wow was I ever naive! As far as I’m concerned, we should all be ranting about the cost of our treatments!

  • Tsmith70
    2 years ago

    Joeic01 – IKR? Currently I’m only taking prescribed amphetamine salts for my MS, which my psychiatrist prescribed to me. My so-called MS/neurologist specialist does very little for me because I will not take the Newest!! Greatest!!! MS Medication On The Market that she pushes. I was burned bad by trying a new medication for another condition (endometriosis) which caused a life long advanced degenerative arthritis condition that has caused my joints/cartilage to be degraded to nearly twice my age – I’m 46 and my MRI’s/X-rays look like the back/hips/hands – heck the whole body – of a person who’s 85 to 87 yr old. This monthly injected medication was in the final trial stages when I started it, so I signed away all of my rights to treatment or compensation for any kind of side effects; from temporary to long term effects to the medication on the advice of my OB/GYN doctor (and because I was 26 and still more naïve to the ways of the world than I believed at the time).
    Now I refuse to take any medication that hasn’t been approved specifically for, and/or hasn’t been prescribed by doctors specifically for MS, or either of the other 2 conditions I have, for at least 7 years, preferably 10 years. This has caused issues between my MS doc and I. I’ve looked and seen other doctors within 90 from where I live (Salem Oregon), and they suck way more than the one’s I’ve had before and who I have now, so I’ve had to settle with what I could get 🙁

    I stopped Interferon injections when my boyfriend’s/partner’s insurance changed around how much they covered for what and my out of pocket cost went from about $100 a month to $300 a month for the injections, and I never saw or felt ANY differences with or without the injections, so I haven’t seen the point of taking it. I live on a SSD amount of $1136.00 a month after Medicare is taken out, so even the hundred was hard. $300? – Forget It. Especially because of my other condition, which I also take 8 prescribed medications (which total about $180 to $200 each month) for. Adding another $300 for a medication that never really did anything for me after 5 years of taking (2 interferons – Avonex and Copaxone (sp) is insane with my limited income.

    You wrote ” When does it become about the wellness of the patient and not the drug manufacturer? I’m all for capitalism however $75K a year, even $65K per year”, and ” hope we can find a cure for this awful disease soon”. Here in the US a cure will never be found. There’s no money in curing a disease or condition. An actual cure is generally a one time treatment for a period of time and you’re all better, like antibiotics for an infection. The money is in a life time need of an expensive medication taken daily, weekly, monthly that may help some of the symptoms of MS (or other conditions), but will also cause side affects. Bonus – big pharma have another prescription for you to take every day to combat a side affect or two of the first medication prescribed. When was the last time big pharma cured something??? Made a new vaccine for???

    Since big pharma discovered they can keep a medication out of generic hands by altering any ingredient, even an inactive ingredient to restart the (7?) years before the drug can go generic as many times as they want, they are able to continue to make huge profits off of a medication for 20 or 30 years if they’d like. But…..that’s not good enough for our owners; the major share holders. So now they are pushing hard to have older generic medications prescribed less and less through purchased “quasi-science reports” about exaggerated concerns, dangers and/or less effectiveness than previous actual scientific, peer reviewed, published reports have shown; less concerns/dangers for… and more effectiveness with..over and over.

    Example:
    If you are in moderate to severe chronic pain it is becoming much worse and way more difficult to get pain relief medicine from any of your doctors that actually works and doesn’t have one full page to a 2 page list of possible short and long term side affects; which includes death most of the time, as the few medications I listed above do.
    Why is this? Because generic medications that work on pain are cheap and do not generate the kind of money their newer, expensive, alternative, worthless junk does. The idea that narcotics aren’t prescribed because they are addictive is a stupid, gullible lie. There are hundreds of medications that are addictive and handed out like candy. Anti-depressant’s are classed as non addictive but also contain warnings about the moderate to severe withdrawals with quitting them. The withdrawal symptoms with just stopping are the same as a narcotic; with the added bonus of seizures, death and increased suicide rates. Now they’ve added anti-psychotics to anti-depressants which also are classed as not addictive but have the same warnings about withdrawal symptoms and the added dangers of stopping/quitting a medication like death, inability to control movement, seizures, and brain damage.

    None of the stuff this country is trying to control by screaming danger or epidemic has anything to do with actual danger to any of us. Come on…….do you really think that a country and its law makers would continue: To pollute the air, land, and water you and children use and get sick from; spray millions of acres of crops with poisons like Glyphosate and Atrazine, which also drain into our water supply as well as sink into our food causing illness, sensitivities, allergies and who knows what over the long term; allow an entire metro area to drink lead contaminated water for years…. gives a dam about whether or not you commit suicide with Percocet or overdose on Heroin????? It’s all about money in a “all for capitalism” world.

    Gabapentin also has the same withdrawal symptoms of stopping a narcotic with added dangers as well. You can also add Trazodone and Tegretol to this list.

  • Jesusfish5
    3 months ago

    WOW! Thank you for that! I no longer have the cognitive ability to write what you wrote.
    Great job!
    America is all in money, we are but a number-nothing more.
    I take a spasmodic and a muscle relaxer because they’re NEEDED, or I’d never move again. That’s it. Nothing more.
    I’m FAR too afraid of every new drug. What will it do 10 years down the road?
    Things can’t get much worse for me than they are, but BigPharm will get none of my money.
    Thank you very much for your post!
    Most sincerely,
    Jfish

  • lolagraknowla
    5 months ago

    Have you found a decent doctor in Oregon? Have you gone as far south as Medford. I was just diagnosed by a neuro there. The office staff seem pretty good, but he is rarely available. He also is a teaching neuro at Doenbeckers.

  • Dorry
    6 months ago

    Most drugs have side effects. I refused a drug once that could cause my eyeball to explode and other drugs that could cause death.
    I agree. Crop spraying and other things we find out later are causing us more health problems. Our food is being contaminated by pesticides. The water is polluted and here in the U.K. they want to impose a sugar tax because of obesity whilst the food manufacturers are not penalized for making the food we eat. Full of fat and sugar. Come on Government. Educate the food manufacturers. How do we know that much of the food additives is not making MS worse? Food for thought.

  • itasara
    1 year ago

    I just got to this site today. I appreciate your “rant.” I think you said a lot of what I and some of us already think. Not only is politics involved in our treatments, but so are insurance companies. I have read blogs where a brand name will not be allowed from an insurance company if a generic brand is available, but not all generics are the same as brand names. The insurance companies then control what medicines we can receive and what treatments we can receive. One of my foot medications, when I went to renew it, was no longer supported by medicare or my pharmacy, so I could pay $1000 for it instead of a much lesser amount I had been paying over the years!! It worked for me for years. Now I have to find something else if there is something that works like that medication did. When Copaxone first came out as 3x/week (and that too was a political move I am pretty sure,) my insurance company wouldn’t approve it at first and gave out a bunch of bogus reasons for not approving it to which I fired back with a lot of reasons of how ridiculous their reasons were. However, truth was the retail cost of 3x/week, even though it is less medication/week and less supplies/week was more than twice the retail cost of the everyday version. However, I know insurance companies make deals with the drug companies and eventually about 3 months or so later, it was approved. I am worried that eventually the new generic version just approved will be forced upon me. I read a blog the other day of an MS patient who could only get the generic form now out for Copaxone b/c her insurance company wouldn’t pay for the Copaxone brand. I believe in leave well enough alone if a medication is not causing problems. The first three months of the year I pay around $3500 out of pocket. After that I pay around $880 every three months. It is a lot but I worry about just quitting and taking my chances that my MS could get worse. It is like an insurance policy in that I take a risk either way but I’m not willing to take the risk not to have the medication, at least not yet.

  • LuvMyDog
    2 years ago

    joebic01: I see no need for you to apologize for ranting, stating your opinions or being brutally honest! Why shouldn’t you??!! Since I had to leave work because of this disease and a few other health problems many years ago now, I am constantly furious about the FACT that unless you are an immoral sl*t pushing out an illegitimate kid every year or some drug addicted jerk with anger management problems, extra money does NOT come your way, no med’s help, no food help, no free anything!!!!!!!!! The drug companies like everyone else are out to make a buck any way they can and if you can’t pay, then the he// with you!!!!!! Financial studies…..Don’t hold your breath…you’ll be dead first before a really sick person gets real help as opposed to the bums of the world.

  • Dorry
    6 months ago

    Here in the U.K. we have the same problems. The drug companies are the ones making huge profits and we are the guinea pigs. Drugs today are way too harsh and cause more side effects making one feel more ill. We also have a zip code lottery. If you live in the right zip code you can get cancer treatment. For many zip codes this is withheld. All down to Funding and which Care Provider has the money.
    When my husband was dying of cancer I was screaming down the phone for someone to come and give him an injection for the pain. Whilst I had to hold his painful body and cry. The reason my husband did not get the syringe driver in early to control medication to make him comfortable was when one of the care professional uttered. “Well if you are paying for it he can have the syringe driver in.” It all boils down to money and the care which should be a priority is a thing of the past.

  • Nobu
    2 years ago

    I saved the artwork from this article – I think they will become posters for when my family and friends ask me – are you in pain or anything else. My answer is YES, always. But these posters might remind them that just because I am not talking about these things, it doesn’t mean they are not happening. And they are happening right now. Talking about symptoms does not improve them, and whinging gets old. Even for me the whinger.

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