Why is it so hard to get treated for MS?

I was diagnosed with MS in May of 2010 after years of trying to figure out what was wrong with me. I woke up one morning paralyzed from the waist down, my doctor said I needed back surgery. I was already able to walk again before the back surgery, but I trusted my doctor and went ahead with the surgery. It made no difference at all. I still staggered like a drunk when I walked, at times my hands were so weak I could barely lift a spoon, I would be just walking along and the next thing I knew I was flat on my face.

Finally, my primary care doctor sent me for a MRI of my brain. I finally had a diagnosis, MS. She then spent two years trying to refer me into a neurologist, to no avail. When she retired, my new doctor sent me to a neurologist who, without even looking at my MRI, told me I did not have MS, I had sleep apnea. I don’t have sleep apnea.

I go through periods that last from 2 to 8 weeks where I basically have narcolepsy. I pass out/fall asleep constantly regardless of how much sleep I get. My heart rate slows to between 40-45 beats per minute and I am constantly exhausted. Then, as suddenly as those symptoms appear, they disappear.

My most recent neurologist visit was not much help either. He won’t try any MS medications on me unless I let him do a spinal tap. I refused. Because of my back problems, I have had over 100 needles stuck in my back over the last 18 years. The last one was so excruciating I was trying to get up before the doctor could get the needle out. I cannot tolerate any more needles. Of course, they won’t knock you out to do a spinal tap. I could get “conscious sedation” which is what I had when I tried to get up the last time I had a needle in my back.

I have agreed to do another sleep study to prove, once again, that I do not have sleep apnea. But then what? What is the absolute worst that could happen if my neurologist gave me medication to treat MS and I don’t have it? Would it kill me? My neurologist has said that I do have some symptoms of MS, but the lesions on my brain could be caused from cigarette smoking. The doctor who read my MRI and diagnosed me with MS said that is ridiculous given the depth and severity of my lesions.

I’m just wondering if anyone else has had this much trouble getting treated? I am miserable. I can barely walk, my vision is getting worse every day, I am exhausted all the time and I can’t find anyone who will help me. I will be 48 on May 6th, but I feel 98.

If anyone has any suggestions I would love to hear them.

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Comments

View Comments (23)
  • Sue
    4 years ago

    I guess the state you live I must make a difference. I live in NY. Every neurologist I’ve seen in the past 30 years has accepted Medicare. Some did not accept Empire, but all accepted Medicare.. They were all affiliated with top notch hospitals. Still no one had a cure.
    I take Tysabri, which is covered (about $4,000). I have a supplemental so I don’t pay anything after the first deductible .i have been on social security disability since I was 57. I am very unhappy that I can’t walk, but at least I know that it was worth it to pay taxes for all those years.

  • JULIE SAVENE
    4 years ago

    I did not realize until I read your story that other people had similar experiences as mine…I went to my GP with double vision & right side ‘tingling’. She sent mr for an MRI (the RX said-to rule out 1.tumor 2. MS & 3. stroke. After the MRI my insurance gave me a name of a ‘MS Specialist Nourologist’-he diagnosed me as having a stroke. I kept going back to him for 1 1/2 years with symptoms ranging from re-occuring facial numbness, to leg drag, but he never touched me-he did send me for tests ranging from Gloccoma to Sleep(they proved nothing), A friend suggested a second opinion, so off I went with a copy of mt MRI- I was seen, sent for a double MRI(head & shoulders), a spinal-I had my diagnosis in a week & was on Copaxone within 1 1/2 months.
    So there are a lot of ‘QUACKS’ out there, so keep looking until you find one that works for you! That was in 2001-I was finally diagnosed in 2003.

  • spuds
    4 years ago

    I am sorry to hear you’re having such difficulty with getting a diagnosis. I did as well as do many people with MS. I was told I probably have had it for years and have been adapting around the symptoms. I have been treated for each individual symptoms. With large doses of Vitamin D, Tegretol,Compazine… I am finally now on Extavia. But the MRI of my brain looks like Swiss cheese. I also have Sleep apnea, as well as MS. I hope you find some relief SOON.

  • Dianna lyn
    5 years ago

    I think I got a little off the subject of diagnosis..but for some reason these doctors don’t want to diagnose”us” with MS..one doctor said, how are going to pay for it?..i couldn’t believe what I was hearing?..so, I am going to talk to our representatives in the area to see if we can figure out this problem??

  • Dianna lyn
    5 years ago

    Lesley Anya,
    I hope everyone is having a one hundred and one percent beautiful day, today…

  • LesleyAnya author
    5 years ago

    Dear Nicci F

    I am so very sorry to hear what your mother has gone through. I can’t even begin to imagine. I have dealt with some rude doctors before, but to walk out and refuse to answer questions? She certainly qualifies for the “witch” category and probably a lot worse!

    I don’t understand why doctors refuse to listen to their patients. Obviously, no one enters into the practice of medicine anymore in order to help people, they are only in it for the money.

    The only two truly good doctors I have ever had are both retired now. They were “old school” they went into the practice of medicine in order to help people, not to get rich. They would spend as much time as it took with every patient to make sure they were taken care of properly. Now, doctors like my Pain Management doctor I have to see tomorrow, schedule 3 or 4 patients every fifteen minutes. I have sat in his office for over four hours waiting for him to see me and when he did, he literally spent a minute and a half talking to me, handed me my prescriptions and walked out of the room. I didn’t even have a chance to ask him any questions.

    In any case, I will say a prayer for you and your mother. I hope she finds the doctor she (and quite frankly, everyone) deserves. I will definitely look into any local MS Support groups and maybe I can find some help there.

    Take care, God bless and Fight On,

    Lesley

  • Nicci F
    5 years ago

    Your story sounds very much like that of my mother. She had surgery on a fractured disc that her doctors were associating with her attacks (for lack of a better word), while in the hospital in recovery she had another. My mother’s attacks consist of her speech becoming slurred, losing the feeling in the right half of her body, and when they are really bad the right side of her body constricts to the point were it looks like everything on the right side has lifted 2 inches, including her facial features. Due to the attack in the hospital the doctor then determined that rather than just removing the disc they had to go in and replace in with a new one fashion from her hip bone. Six days later she had another attack. This time at the pharmacy picking up her meds. I was about 9 years old and as she started to lose balance she grabbed my hand to keep her from falling. My mother being “old school” was embarrassed by the seizures and terrified someone would think she was an unfit parent who was drunk, especially since she hadn’t been diagnosed with anything. Unfortunately, this attack came on so violently that she was unable to let go of my hand and broke it in three places. I started screaming in pain, and my poor mom was trying so hard to let go but couldn’t. Thankfully the pharmacist recognized that this was a seizure rather than a drunk parent abusing their kid and hopped over the counter pried her hand open and called an ambulance for the two of us, and we were rushed to the hospital.
    Due to the surgery and having a rambunctious 9 year old, my mother was recovering at a friends house out of town so it was not our usual town hospital we were taken to, and for that we got lucky. The ER nurse, whose husband was suffering from MS, was the first person to ask my mother if she’d ever been tested for it. The ER doctor actually listened to her recommendation (you know back when doctors knew they were people not gods), admitted her, and the next day they performed a spinal tap (mind you this was in 1980 so it was the only test for it at that point), and low and behold the surgeries were not necessary because she had MS. Two weeks later back at her doctors office her doctor decided the tat was inconclusive and told her she’d been misdiagnosed by the other doctors. My mom is not one to usually kick up a fuss, but with me sitting there with a 3 lb plaster cast halfway up my arm, she did this time. She demanded a 2nd opinion and ended up having to drive 4 hours to San Francisco to get one.

    It’s now 34 years later, and she’s still having the same problems with doctors. We’ve been through 23.

    Two years ago, due to her doctor retiring and a change of insurance at her job, she had to find a new doctor. Who I have to say really should consider a change of occupation. First, she didn’t think my mother had MS and wanted to runs battery of tests on her, which the insurance ended up denying. Personally, I don’t think 6 minutes with a patient is enough time to make that kind of diagnosis. Then she put her on a daily injectable medication that sometimes helped. To be on this medication required my mother to go to the doctor twice per month to have the doctor poke a pin in her hand. Not a blood test just poking her. We still have no idea why, and she would never tell her.
    In beginning of December my mother was informed that her department would be getting laid off end of Jan. Medicare doesn’t cover the medication, so the price would have gone from $135 to $1500 per month. She tried talking to her doctor about it and the woman told her there was nothing else for her, and my mom should consider that $1500 per month is cheaper than being an invalid in a convalescent home. She told her that she only takes a certain number of Medicare patients and she presently full so her appointments would now be $75 per visit. I attend my mom’s next appointment and started asking a bunch of questions the doctor refused to answer, and she actually had the nerve to walk out of the exam room while I was in mid-sentence saying she was far to busy to answer questions. So, I took it upon myself to park myself at the desk in her office and quietly refused to leave until she answered my questions. The witch (can’t use profanity but I’m guessing everyone here knows what I would like to call her) even threatened to call the police if I didn’t leave. Needless to say we found my mom a new doctor who immediately took her off the medication. Turns out that particular medication was not meant for her and really only good for people who are in their 30’s and under not someone in their 70’s. I’m a non-violent protest person, I almost enjoyed how upset this woman got that I wold raise my voice but kept quietly asking for her to please answer my questions, but finding out that my mother never should have been on that medication makes me want to punch her in face… repeatedly.
    I can’t believe that after dealing with for the last 34 years, and all the money that’s been raised and all the research that’s been done and is being done it’s still this hard for someone to find a decent doctor.
    In our latest search it was recommended, strangely by my orthopedic surgeon, to check with the MS Society in our area and find a support group and either attend a meeting or call the person in charge and ask for recommendations. It might be something to check into if you’re not having any luck finding a doctor you like.
    Sorry this was so long.

  • Jen
    5 years ago

    MS is still such a difficult disease to be dx’d. My experience “began” at age 35. Started with vision problems (bad double vision for a day). By the time I could get an appt & see an eye doctor, my vision was back to normal (I was given a few vision tests and sent home). A few months later–had major leg numbness (lasted about 3 weeks). So, I went to a doctor for the 3-week leg numbness, and I was told “your nylons are too tight, you are fine.” (Ummmm, ok). A few more years go by … then one day, I lost all feeling in one leg (but I could still walk). That major leg numbness lasted about one month. I KNEW the “stockings-too-tight theory” was a bust (I’d stopped wearing stockings for years). Still had no idea what was wrong with me.

    Fast forward 7 years — I ended up in an ER with major slurred speech (I was terrified I was having a stroke.) My speech slurring began very minor, (on a Monday) and by Friday, my speech was so bad that my coworkers probably thought I was drunk. I literally just stopped talking at work by Friday, and knew I had to do something. So, on Saturday, I went to the ER.

    Thankfully, this hospital’s ER admitted me within about 5 minutes. I had walked up to the ER desk — but I was slurring so badly, they could not understand me. I was told “stick out your tongue” (it went sideways), and I was admitted immediately. I was hospitalized for 3 days (I was given steroids for 3 days), and given two tests: An MRI and a lumbar puncture. The MRI showed major brain lesions, the lumbar puncture “confirmed” that I had “fluids that confirmed MS.”

    I went home after the 3 days, and it took about 2 weeks before I was able to speak clearly. Within 2 months, the hospital’s neurlogist put me on the Rebif medical study (before Rebif was approved by the FDA.) Used Rebif for about 10 years. Then I lost my job, my Cobra insurance ran out, and I recently relocated to a small town. I have been on “0” medications for about 2 years. The fatigue is really setting in (w/balance problems). I am thankful I am not worse. I did recently sign up (and now have) health insurance (with very heavy co-pays). I would like to look into the MS pills, but I don’t have a spare $5,000 right now to get that ball rolling. I have not felt “well” in years, and have ongoing balance issues.

    All of us with MS miss the lives we had — before MS hijacked our bodies.

  • Wendy
    5 years ago

    I also went through an unnecessary surgery. I was told I had spinal stenosis and needed a cervical fusion. No change! I saw EVERY type of doctor out there, spinal tap included. Nothing showed MS. I basically self diagnosed my symptoms and after over 2 years of tests and mri’s. Voilà…….MS. The diagnosis sucked but it could be worse. I then got a second opinion and joined a clinical trial. You know your body the best and the squeeky wheel gets the grease. Fight fight fight for an answer. If you don’t, nobody else will.

  • Pam
    5 years ago

    I was dx’d by a neurologist who also told me I had benign ms and did not want to give me any meds. I then went to a neurologist recommended by a friend who also has ms.. he looked at my mri and said that without a doubt I have ms. lesions all up and down my spine and on my brain. no mention of a tap. thank goodness:). you really should ask for another opinion. look for a ms specialist? it also took me 20 yrs to get an answer as to what was wrong with me.. good luck. and don’t stop till you’re satisified with their dx.

  • LesleyAnya author
    5 years ago

    Pamelajoy,

    I am very careful about what I eat. No refined/processed sugars, no msg, no preservatives, no caffeine…I quit smoking, I very rarely drink if I do, it is a small amount on a special occasion. I have also done the gluten free diet. I gave up all aged cheeses, red wine…All to no avail. Nothing made any difference at all.

    I have never heard of the metal cleansing, but that wouldn’t make any difference with me since all my front teeth on top and bottom were knocked out in a car accident in 2005. I just had the few remaining teeth in back pulled and now I have a full set of dentures.

    Peace and God bless,

    LesleyAnya

  • pamelajoy
    5 years ago

    I would just like to echo what everyone here has noted as benficial to dietary changes… get all the processed and sugars and trans fats out. I cannot say the difference in my pain and energy levels when I eat and drink clean. I have two separate disc herniations and did not succumb to surgery but to MANY injections– as a result of this “medicine” I was also diagnosed with sleep apnea which I also no longer have… End chemicals, eat and drink clean and see how you are then… things will clear between diagnosis. I also supplement as suggested by swank, with a little additional research of my own… I am praying for you all…

  • LesleyAnya author
    5 years ago

    I just want to thank all of you who responded to my post. Just knowing I am not out here all alone really helps. My MRI’s have never shown any lesions on my spine, just large deep lesions in my brain. The doctor who diagnosed me said that the lesions are why sometimes I will just be walking along and the next thing I know I am face down in the pavement. He also said that the lesions are what caused me to wake up one morning paralyzed from the waist down. That lasted two weeks.

    All the neurologists I have seen so far want to blame my exhaustion on my non-existent “sleep apnea” and my other symptoms on my back problems. I am going to keep looking for a doctor that will help me, regardless of how far I have to drive and I am sticking to my guns, “NO SPINAL TAP” ever.

    Thank you for the support and the prayers. Please know that my prayers are with you as well. Maybe someday there will be a cure and we will not have to go through this any more. God bless you all.

    Peace and love always,

    Lesley Anya Deskins

  • pamelajoy
    5 years ago

    your story sounds so parallel to mine… I want to say specifically that I also do a heavy metal cleanse twice a year…. may sound odd but- do you have a lot of fillings in your teeth? I did this between two MRIs and lesions were lessened, my nuerologist is unable to say why…

  • kay
    5 years ago

    Bless your heart.I have been thru the same thing, seeing one doctor after another and after more than 15 yrs., I was diagnosed with MS. But now I have 5 other auto immune diseases. I have de-myeline all down my spine. I see a MS neurologist but since my MS never goes always she will not give me any medicine. I will pray for you to find a good doctor and now you are not alone.

  • LesleyAnya author
    5 years ago

    Kay,

    I don’t understand why your doctor will not give you any medicine!?! Maybe you need a second opinion. I wasn’t aware that your symptoms had to go away before you could take any meds for MS. I thought the meds were to help make the symptoms go away. I will keep you in my prayers and I hope that you can find some relief soon. Hang in there sister!!!

    Peace and love,

    LesleyAnya

  • "Rain
    5 years ago

    LesleyAnya,
    Dr Terry Wahls MD and the Wahls Protocol is a form of Paleo Diet, it’s Gluten Free and Dairy Free and is helping with all kinds of AutoImmune Diseases and she is a MS sufferer herself, it can’t hurt to check her out. She is on FaceBook has YouTube Video’s and some books and is doing study’s check out this article.
    http://www.bottomlinepublications.com/content/article/diet-a-exercise/dr-terry-wahlss-brain-boosting-diet-helped-her-conquer-multiple-sclerosis
    God Bless,
    Best To You,
    ‘Rain

  • Sonya
    5 years ago

    LesleyAnya,
    It is when I read, or hear stories such as yours , that I feel so ashamed for the complaining I do. My heart goes out to you & I shall remember you in my prayers.
    I totally agree with the other comments…you need to find a neurologist that will listen to you & act accordingly! I was diagnosed 7 years ago, & a spinal tap was not mentioned. My doctor went on the MRI findings. Did your MRI show lesions on the spine as well as the brain?
    My prayer is that you will be able to find a neurologist that can help you. I know an hour & half, is quite the drive, but if you could find the help you need, I would definitely try Cincinnati.
    Best of luck to you. Please keep us informed.

  • LesleyAnya author
    5 years ago

    Sonya,

    Never feel ashamed for complaining. Everything is relative. A while back, I would hear stories so much worse than mine that I felt like crawling under a rock for mentioning my seemingly insignificant issues. Then a very wise woman reminded me of something, we are all here because we have a common bond. We are all here because we have MS and we share with our fellow sisters (and brothers) how it has affected and continues to affect our lives.

    We are here to support each other. Nothing is insignificant and no one should ever feel ashamed for sharing the way they feel about how MS has affected their lives. You are in my prayers.

    Peace and love,

    LesleyAnya

  • 27orange
    5 years ago

    LesleyAnya, I’m sorry for all your troubles. I think it’s important to find a neurologist who specializes in MS and is up-to-date on the latest research and medications. I realize this can be difficult depending on your location and your insurance coverage. When I was diagnosed in 2008, I lived in California; now I’m in Maryland, and both times I lived near university health centers with major neurology research centers. I started treatment based on results of MRIs; no one has ever asked me to have a spinal tap. MS is such a frustratingly changeable disease. Keep looking for a doctor that you trust and can talk to.

  • LesleyAnya author
    5 years ago

    I live in Kentucky. I have been to three neurologists. None of them will give me any meds for the MS without confirming the diagnosis with a spinal tap. I started having MS symptoms in my mid twenties. I am now 48 and was diagnosed 4 years ago. I was diagnosed with rheumatoid arthritis, lupus and fibromyalgia before I finally got diagnosed with MS after an MRI. The doctors I have seen have all said that because I don’t have what they consider “classic” MS symptoms that the lesions on my brain must have been caused by smoking cigarettes. I have been through tests for sleep apnea and a myriad of other things, but no one will try me on any MS meds unless I consent to a spinal tap. Which I will not do.

    Thanks for the comment and I will keep trying to find a neurologist that will help me. I live in such a rural area the closest neurologist is 30 min. away. I’ve been thinking about checking in Cincinnati, OH. That’s about an hour and a half away.

  • Lowdramamama
    5 years ago

    I do not know what country you live in – but if you live in the U.S. – you need to get another neurologist’s opinion!!!
    I was dx’d in 1985 w/MS, age 25 via MRI. A SPINAL TAP WAS NEVER EVEN MENTIONED! (Back when it was very difficult to dx MS)
    Fast forward to 2010 – dx’d with SPMS. AGAIN – A SPINAL TAP WAS NEVER MENTIONED!!! I go to one of the best MS clinics in the nation, UTSouthwestern Dallas.
    And in 2010 – I was one of the 1st people in the U.S. to start on GILENYA, the 1st oral MS drug…even though it’s intended use was for patients w/RRMS.
    I’ve been taking GILENYA for 3.5 YEARS – and my MRI’s since then have shown no new dz or dz activity! DON’T TAKE NO FOR AN ANSWER!

  • pamelajoy
    5 years ago

    LIKE 🙂

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