From the article: How to Talk to Your Doctor About Pain (or Anything Else)
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
undiagnosed
- For about 10 years I have been having vertigo, headaches and body parts that would just quit working. I went to the doctor he tells me I'm depressed and says antidepressants is what Ieu need. I refuse. Almost 4 years ago I black out while driving and smash up my truck. I couldn't dial a phone number (it came out backwards) I couldn't speak properly. New what I wanted to say but couldn't get it out. So problemsems, had problems move my right side, memory loss has been ongoing. One day I am fine the next I can't count or speak. It's been tough. The doctor refused to check for a stroke saying I'm too young. My doctor has made me a part of the chronic pain clinic and tried putting me on morphine and antidepressantsas treatment for pain. I refused. I went to a natural doctor and some relief was had. I thought I was getting better but then the pain came back in new areas and began having muscle spasms, getting more and more clumsy, grew very tired over nothing, . I need helpc
- —Guest Alberta
Scare Tactics
- Neuro told me that if I didn't take a medication that I would be wheelchair-bound in 5 years - which would be too late because HE was going to find a cure by then and I would be too ill to recover. That was 4 years ago. I am still ambulatory w/o taking that particular medication. The egomaniac unfortunately has not found a cure. I have met a couple of neuros that use scare tactics. Thankfully, there are some that treat patients like reasonable, intelligent adults. It just takes a while to find them.
- —Guest Andy
Good Neuro
- met my neuro in hospital as on-call neuro - did 2 MRI's, lumbar puncture (did not hurt-great dr. did it), saw the on-call neuro the next week, dz with MS & had further test - have neuropathy also. On Copaxone - doing well. Love my neuro so far he sits and listens, spends as much time as I need - his office staff is great too. Have not had any relapse - about 2 1/2 months. Will have another MRI in 3 months. So, even though he is a man - he actually takes time to listen. Sorry for all the bad ones out there.
- —Guest Faith
Healthcare in Canada -Dx w. MS @ 61
- At the age of 61 diagnosed with MS in Sept, having an episode of slurred speech, tiredness, & foggy vision 25 years ago when I was told I had a virus & now years of pain later & losing my ability to walk w/o a cane . I'd been telling symptoms to my GP for the last 5 years, who ignored me & when I did actually ask her if I had MS 2 1/2 years ago, was told a flat "No". I had stepped on her toes with my own dx as after that she seemed to hear me even less. When I told her about my increased bladder control problems, told that this is a typical post menopausal issue. Incredibly hard to keep going back to her & the thought of trying to find another GP (almost impossible in Canada) was so discouraging especially with the pain & sleepless nights I was having from the constant tingling electric shock feelings I had in my back & legs - a nightmare. Finally sent to a neurologist who ordered a thoracic MRI for
- —ladybinford
Treat These Idiot Doctors Like Employees
- Why, oh why do we put up with these morons? I, for one, don't. I treat physicians like employees. You work hard for me...fine, I'll keep you. You act like a dolt...I fire you & take such gleeful joy to tell you to your face as to why your "services are no longer required". Hehehe. They NEVER see a patient like me coming. Good. As someone with MS, the last thing I need is to deal with pompous, under educated halfwits.
- —Guest Andrea
ms
- I have been living in severe pain for 16 years. I was diagnosed with hearniated disk 15 years ago, followed by fibromyalgia, tendinitis, bursitis, CFS, arthritis and carpal tunnel. Never got help from doctors. Went to er last week due to numbness in left side of body and doc said he thinks I have MS. Process begins tomorrow
- —Guest cindy
No pain with ms?
- Have had chronic pain and constant spasms since my diagnosis 12 years ago. Have had 3 neurologists tell me that ms patients do not suffer with pain. One of them is regarded as the "ms guru" in Vero beach, fl and is the director of a clinic there. I was recently hospitalized for ms related complications and the neurologist on duty treated me like a junky when I told Him about my intense pain. He told me that he is an expert in ms and there is never any pain associated with the diagnosis. I was in horrible pain and wished I could trade bodies with him! I mailed him a number of research articles on the subject but never received a "thank you". Shouldn't the neurologists in this country have a greater handle on the symptoms of this disease, and a more empathetic approach when working with patients who are at their mercy?
- —Guest Kerry in port st lucie florida
Neuro's in OZ
- GP says i have MS based on history, lesions on MRI & relapsing remitting sx. Neuro appt, bounced when i walked, fell over hard twice, left hyper refelex, left ancle clonus & reactive spasms up to my groin, i felt like i was being tasered but he did that test over & over, same results, he got annoyed & kept telling off, huh? He kept asking q's on mental health, been tested & i'm fine! but he kept asking & said psychiatrists dont often recognise mental health issues,huh? He said eye sight has nothing to do with MS, huh? Dismissed my cognitive changes & identified IQ losses as subjective, huh? Took my blood pressure for about 5 minutes, which was normal then as bold as brass said I didn't have a neurological condition! When I asked how he came to that conclusion his behavior got worse, i was confused, hurting from his tests and mentally seething after he asked my husband how he was doing. GP still convinced its MS, i'll see another neuro when hell freezes over!
- —Guest JJ
Too fit to have MS?
- Went for a second opinion after initial diagnosis and the Dr looked at my arms and legs and said I was too toned looking in my limbs to have MS and to come see him in a month and he'll take a look at my MRI results. which I had with me on my next visit. You start to wonder how these doctors got their license to practice.
- —Guest jj
The best and worst
- My first Neurologist was empathetic and kind. Although I had to drive 3 hours to see him, it was well worth it. After my first evaluation he put his hand on my shoulder and said "We're gonna take care of you!". I cried with relief. He moved to another state and so I went to a neurologist closer to home (1 hour away) who was just out of med school. She didn't think my MS diagnosis was conclusive altho 2 other neurologists had confirmed the diagnosis. She wanted to do an array of tests and I said no. She made me do another MRI and I reluctantly agreed. My Rx of copaxone was going to run out and she refused to fill it unless I came back and meet with her (so she could make more money) I was going to school, working 35 hours a week and had a family. I said no so she refused to fill my prescription of copaxone. I have not been back to see another neurologist.
- —Guest Guest from Cedar
Best/Worst doctor experience
- I had been in the hospital for 3 days and all of my tests results were back for a day already, but the neurologist was not going to be able to see me. The nurse paged her and she called me on the phone in my room. My husband answered and asked if she was coming in because it was already 7:00pm. She said, "your wife has multiple sclerosis" and that she would see me tomorrow! I didn't know anyone that had MS or what it was, I only thought of Annette Funicello in her wheelchair, and that she was unable to speak I still cannot believe that! I was devastated as well as my entire family, we never knew that she was considering a dx of MS. I guess you could call that NO BEDSIDE MANNER, literally!
- —mich1963
Good Bunch of Doctors
- I was lucky.I have a fantastic GP. I was complaining of giddiness and it went on for 2 weeks. She made an appointment for me with an ENT thinking I was suffering from vertigo.He put me in a chair and tilted it back to settle the sediment in my ear, he did it 5 times and was still the same.He then made an appointment for me to do an MRI and it was 2 days later I had the results and it was MS. I am now being treated by a doctor who specializes with Neuro. and also MS. Great bunch of doctors
- —Guest Susan Fernando
The MS Guessing Game
- DX with MS 17 years ago. Blindly have taken orders from my docs and started taking Avonex, Rebif and the latest, Copaxone over 15+ of 17 years. Honestly, after much research and evaluation of this disease it is my opinion the medical community are strictly guessing on the true causes of this disease and have no clue how to best treat. 18 months ago I decided to quit playing this MS game and stopped taking ANY MS drug. Thankfully, since I stopped sticking myself everyday with Copaxone I have not seen any further progression of the disease based on my latest MRI scan. I am a firm believer a daily regimen of exercise will far better serve each of us that live with this disease. In addition, in my desire to help docs and their patients better understand the effectiveness of the many MS drugs available, I requested quantifiable data be provided. Was hoping the MS Society would take the lead on this endeavor. The NMSS rejected this request. Makes one wonder true intent of the NMSS.
- —Guest Bill Rouse
Misdiagnosis
- I do construction work. In 2007, I lost feeling in my left leg. I asked a neurologist to check if I had a pinched nerve. They MRIed my spine - and by the time I had waited for the MRI (2 months) my leg was fine again. When my neurologist contacted me to tell me the results of the MRI, I told him I have all feeling back in my leg now, thank-you. I cancelled the appointment. My Neuro did not tell me that at 27, they found no pinched nerve rather I was prime for MS diagnosis. I wish he had told me to come in - as I got a full blown diagnosis this year instead. Woulda liked to know back when I had a CIT, rather than full-blown. Doesn't a neuro know better? I am a classic case...
- —joewhoever
My wonderful wonderful MS doctor
- I have the most awesome MS doctor anyone could have. She has made me feel cared about since the first day I saw her. Every new thing that comes along we always discuss it and I trust whatever she recomends. I wouldn't trade her for anything. She has been my rock through this and especially in the very beginning. I have been lucky to have wonderful people doing all my tests. The only problem I ever had was me...the very first MRI I ever had in my life I went into the tube with my eyes open and she had to bring me right back out. As long as I shut my eyes before going in, I am fine. I just feel very lucky to have had all good experiences and sure hope I haven't jinxed myself. :-)
- —krznana
1-15 of 64Next
