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.
Still in Limbo
- It all started with the "electric shocks" when I look down, then Numbness in my lower back when I went anywhere, then it spread; thighs, trunk, and both arms, tongue, slurring speech. the first told me MS and sent me on my way(happy 25th birthday?). the second, I had Transverse Myelitis and shuffled me out the door, 4 months later the migraines started. I forced them to send me to the MS Clinic, the Neuro sent me for more shots, told me Brain is clear but there was a new spot nearing the C1, but the Other MRI missed it, gave me some drugs and sent me on my way. 2 years later, they called me for a new MRI but I had moved, they referred me to the MS research Clinic at UBC, I found the other Neuro lied. I have a t2 on the right temporal lobe, the spot on C1 WAS new and have Multiple T2 and Hyper-intense Foci. She can't give me a definitive Diagnosis of MS so far (most damage is in the SC) But agrees I have a auto-immune disease. I'm 30 in three weeks, now I ahve hand/finger tremors...
- —Guest In-Limbo
Doctors, Nurses, M.S. PAIN
- As a previously neuro nurse, I saw the absolute worse cases and many pts. that still could get around-were in hospital for steroids to treat relapses. The majority of them were on pain management programs & I never questioned their need for pain meds. I have had M.S. for almost 7 years, have many spine problems, & have a inoperable tumor on my lower spine. Every time I am hospitalized, from the E.R. t/o my stay, so many nurses and docs who either come out & comment on my pain meds or bluntly treat me like drug seeker. I know not all M.S. pts. have pain, however, many of us do & many of us have extreme pain that is worse when you are in a relapse. I think any hospital that admits us should have mandatory education regarding M.S. including the pain mgnt. aspect. For me, there is nothing mor insulting to treat me like a junky instead of reading my history or just respecting the fact that pain mgnt. experts have concluded that my comfort is important for the quality of my life..........
need to find ms dr.
- i had ms all my life, but started getting worse about 10 years ago, when i started working on computers. i had problems with my eyessight first, then memory, then pain sweating numbness etc. finally quit job, went to about 20 dr. who did blood tests and told me their is nothing wrong with you.
finally diagnosed myself with fibro. i had an mri about 6 years ago and they found schlerosis in my spinal canal, but the dr. told me it was a tumor, and they going to have to remove it, before it grows and i die. but of course they couldent get it out. i finally figured out i have ms. now i need to find a good dr. in phx az. does anyone know of one? let me know thanks lilli
- —Guest lilli from phx
"I don't know, YOU figure it out!"
- In 2008 I was suffering from intense, constant vertigo, migraines, body aches, weakness, and other symptoms (it turned out to be the first bad attack of many, but I didn't know that yet). I was referred by my regular doctor to an ENT/otolaryngologist. I was so dizzy and off balance I couldn't even walk down the hall to his office, and I fell out of the chair while talking to him. He looked me over, commented on my poor balance, and then said he had no clue what to do with me. He said, "While you're here, I might as well check your hearing." So he gave me a hearing test, then sat me down in his office with a book 6 inches thick, and suggested I look up my own diagnosis. After I few minutes, I left, figuring GOOGLE was easier to search than his stupid book. (This disorder still hasn't been diagnosed, and I've had LOTS of awful doctors, including one who fired me for being difficult to diagnose, but this ENT was really the weirdest, least helpful doctor I saw).
- —Guest sociallyskilled
- 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
- 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
- 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
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
- 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!