From the moment that we hear the words “you have multiple sclerosis,” our lives shift in many ways. We suddenly become people who need to form a partnership with a neurologist (or other physician) to help us navigate our lives with a chronic disease. At least, that’s how it supposed to work. I hear from people who love their docs, but I also get an equal or greater number of messages from people who report that their doctors scoff at them or refuse to listen to what they have to say. What about you? Tell us about when your doc brought you peace or made things worse. Share Your Story
Compassion was not in his vocabulary
- When my cognitive problems started to interfere with working, I asked my Neurologist about starting the process for receiving Social Security Benefits. He told me that he had patients in wheelchairs that didn't receive SS Benefits, and he would not help me. I asked him what was going to happen when my employer noticed how my work was slipping. His answer was "you'll get fired". He was the same Dr that walked out of the room (and left me with interns) after he told me that I had MS. Needless to say, he's no longer my Neurologist.
- —Guest jaymer
Worst Dr. Experince
- The worst experience I had is when a Dr. told me that my symptoms were all in my head; that I was making things up. Oh, I was so mad!
After I fired him, I was diagnosed with MS. Today, I am Secondary Progressive.
- —Guest Kathy in Oregon
he called me a liar
- Three times in one visit, my doctor called me a liar. Then he yelled at me, "nobody looks as good as you do, and is as sick as you claim to be, lady!" Then he got up, yanked the door open, stormed out, and slammed the door as hard as he could. I sat there in absolute shock. Ten minutes later, he came back all smiles and finished the appointment. Where did he go and what did he do during those minutes?
- —Guest Karen
- Doctor was great until lost my insurance. ms helpline hasn't helped me. dealing with this all on my own
- —Guest Christine in Florida
Bad and Good
- Had been diagnosed by 4 docs (one a leading expert) as suspected of having MS 15 years ago. Didn't show up on tests. Had to change doc due to insurance and he tells me it is not MS. He could barely take the time to listen, was arrogant and was more interested in telling me he went to college with my previous doc. Skip ahead 15 years diagnosed with fibro. & go to neurologist for migraines. He says he thinks it is really MS & tells me arrogant doc is great for telling people they don't have it when they do. Now MRI shows lesion so I guess new doc is right. He's great. Wish they were all like him.
- —Guest Tammy
- After suffering chronic back pain, (bulging spinal discs + arthritis) and the wait for the public health system being so slow, I decided to bite the bullet and pay for a specialist. This is what happened. I walk in, the 'doctor' throws my chart on his desk, and says "What do you want me to do, I'm a back surgeon." I said, "Ah fix my back?". After silence, I said my GP mentioned a cortisone injection in my spine guided by CT. The specialist looked me up and down like a bug, and said quote "Would you even fit in a CT machine? How much do you weigh?" I was in shock. After more silence, he just wrote a referral to have the injections done, handed it to me without looking at me, that was it. I walked out in shock and very upset. To add insult to injury, I then had to pay the receptionist $200 for that experience. I also just happened to be having a major MS attack, and was then admitted into hospital, through which I was then placed on the public waiting list for my back!!
- —Guest Suze
From nincompoops to arrogant idiots
- Since my dx in 95, I have yet to meet a decent neuro. The first wrote to my then employer advising them of my dx (I was a Director for a firm of solicitors). A month later I was sacked, no reason given.
Another quack had the audacity to tell me how ignorant I was when I rang and spoke with him about the pros and cons of antioxidants. I had two words for this asshole and they weren't Happy Birthday.
Last neuro I ever saw (supposedly the top neuro in the UK for MS) was nice enough but totally not interested. Said 10 minutes into the consult "sorry, nothing can be done for you" (now would you please just go away and die). When I tried to discuss and obtain Fampira with him he ignored all my emails (he apparently doesn't speak with his patients over the phone, extraordinary). In my final email I reminded him that without patients, he wouldn't have a job. His reply? Find a new neuro.
These guys are all, without exception, morons.
- —Guest Atheana
Lost trying to get diagnosed
- I was 19 when I was diagnosed with MS. I had so many symptoms within the period of 5 months, but the doctors in this area didn't piece them together correctly. There was a thought that I had "pinched' my sciatic nerve when I dropped a box (had gone numb from the waist down on both sides of my trunk), and the orthopedic doctor advised me after I had tried to lift my leg (with no success), that "it's all in my head" and
"there's nothing wrong with me". My original Neurologist who diagnosed me after piecing all the symptoms together (along with spinal tap and multiple MRI's) that "You have MS, but I have to go now-I have a golf tournament to attend". I was admitted to a hospital for rehab while I wheeled myself to the hospital library to find out what MS meant... :( Learned to walk again with rehab and have taught myself to learn through literature and multiple neurologists, rehab, medicines. Walking still after 19 years :)
- —Guest tinatblue
- In 2012, I am progressing rapidly after 12 years with MS. I now have to use a walker and a scooter. My doc, who I have been with since the beginning of this ordeal said, when I expressed some sadness at my current state, that she saw someone recently with ALS and it made her cry. Basically she told me to buck up -- that things were not so bad for me and that they could be worse.
- I was diagnosed 14 years ago. My GP "suspected" and immediately referred me to a Nero who confirmed MS. Then the Nero "retired" out of private practice. So......I then had the "joy" of discovering like so many....there are good, and then there are "REALLY?" are you for real? Dr's out there. I went Dr. Shopping. Went thru 5 before finding Dr. perfect! The one right before Dr. Perfect made my husband and I wait in his waiting room for 2 1/2 hours before meeting with us only to proceed in telling us he would be making his millions "making suits" men's business suits! In total exasperation I asked for a referral to the top Nero in my state. He gave it to me! The drive is 4 hours each way to see him but at least I know I am getting the best health care and advice without having to by any business suits along the way!
- —Guest Jolynn
- Thank you for your kind words. I truly feel for your mother. I enjoy going to the canioss for entertainment and I get worn out just going for fun! Working there; while struggling with MS, would be a challenge for sure! Best wishes for a New Year full of promise and good fortune.
- —Guest AJKphoSIQDjbiLIa
- Kim,My sister was digasoned with MS at about the same age as you were. She is my hero, just as you are an inspiration to others. Though my sister Jeannie now walks with a cane, she never stops giving. She always asks what she can do to help everyone else, yet never asks for anything for herself. She congratulates me when I finish races and I wonder if anyone ever applauds her at the end of a day for the effort and endurance she expends. I love your blog and will share. Keep doing what you are doing, and best wishes.
- —Guest AQHSStpuThmpXV
- he just look in my ear my nose and my month and he told me i had ms and tap my knees and said i could have ms one doctorre told i had bell palsy whats really going on
- —Guest leola thompson
TOOK 8 NEURO AND 8 YEARS FOR A DIAGNOSE.
- None of the 8 specialist neuro I saw thought of doing a spinal tap on me. After 8 years of MRI, and seeing the best dr they would NOT give me a diagnosis. Finnally, I decided to see a women Neuro, she gave me a thorough exam, a new MRI, a "Spinal Tap", and walllaaaa! She came up with the correct diagnosis: MS. She is the best neuro dr to me. She is caring, she listen, and helps me to cope. It took a young women Neuro to give me the right diagnosis.... God bless her! I'm convinced that dr do NOT take seriously the complaints from women, and specially at my age 66.
- —Guest ORN
help me find a good ms dr.
- i have ms but cant find a doctor to diagnose me. if you know of a good dr, in phx az please let me know thank you sooooo muck lilli
- —Guest lilli hornbaker