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.
- My doc saw a birthmark on my leg. He asked "what is that on your leg?" i told him "it's a birthmark" he than asked "how long have you had it?" response: "sept 1961"
- —Guest james_dav_bmcg
WORST MD !!
- My worst MD experience was when the male (!) MD answered his cell phone in the examining room! A persoinal call! About his son's mortgage!
Great Doctor Found in NE PA
- Dr. D Nathanson; Was in Allentown PA @ the time. Now is practicing in Wilkes Barre PA. So I did what any good patient would do, I FOLLOWED HIM! So what, it takes a little longer to get there and get home! Winter time of 07 I went to a seminar he was talking about MS and I was able to walk up to him and introduce myself. Ever since that day he has been my FRIEND, and also my MS doctor! He has got to be one of the very best at his job. He listens to all your questions and answers them openly and honestly. I am a married man of 20 years and NOT ASHAMED to tell you I LOVE THIS MAN! HE IS ONE OF THE VERY BEST MS Doctors I have ever seen but even a better friend! Because so many bad stories are on here I won't share the bad experience on that end. Rather just know it is possible to find a doctor who will listen and care! Please keep looking until you find what you NEED!
- —Guest Tom (Schwindy) Schwindenhammer
- After 8 months of testing I was told I had MS. Decided to have a second opinion. The second doctor didn't even look at all my MRI's, tests, etc and told me I had carpel tunnel on my right hand. All my signs were on the left side!! Third doctor confirmed the diagnosis.....
- —Guest Cyndi
It's all psychosomatic!
- When I had my first major exacerbation I was having extreme loss of balance and intermittent loss of motor control on my entire right side. I went to the ER, they did a CT, said it was clear and referred me to an outpt neuro. A week later I lost fine motor, could barely walk and had the worst headache in my life. Went back to the ER and they were angry. Why was I not just doing my outpt testing? The neuro at the hospital told me they'd run some tests but I had to prepare myself for the fact that they wouldn't find anything because my symptoms were all psychosomatic brought on by stress. I was livid. After they did an MRI and found lesions I didn't get so much as an apology. They wouldn't diagnose MS until the lumbar puncture results came back, which would not be for a week after I left the hospital, so they wouldn't even tell me what they thought was wrong or what they were testing for, or why they were giving me steroids, or even what the lesions were. I guess they were psychosomatic!
- —Guest Typhany
- I have had many symptoms for years. At least twenty. My dr whom I have been seeing since 1996. She has always told me she believes I have ms. In 2007 I was hospitalized with what they thought was a tia which they said would dissipate. It got larger. So I decided to see an ms specialist. I saw him for 8 years. Still no diagnosis. Because I keep getting worse didn't make sense to him. My mri didn't show the amount of white matter lesions needed for my disability. I decided to see a neurologist not an ms specialist. After his exam and reviewing my films it was obvious to him that I have primary progressive ms. I have been doing research on my own and everything I read about poems matched in my mind what was wrong. I felt bad leaving my ms Dr but on the other hand happy to know I wasn't crazy.
- —Guest Gail
MS "specialist" threw me out!
- I had a neurologist who claimed to be an MS specialist, however he immediately dismissed my fatigue and body aches as merely symptoms of depression and he counseled me to begin a new exercise program, even though one of my chief complaints was that I was too tired and achy to exercise anymore. The second time I saw him he persisted with his depression theory and told me in an extremely condescending tone that fatigue and dizziness were not symptoms of MS at all. I told him that, according to the Natl MS Society, 80% of people with MS experienced these symptoms. He raised his voice and exclaimed, "So you're the doctor now?!" After some discourse and he became increasingly more defensive, my husband complained to him that he was being dismissive of my problems, the Dr yelled at us that he would not be yelled at in his office and that we were to leave and never come back.
That same Dr gave a talk a few months later on how to better communicate with your neuro! Unbelievable.
- —Guest Typhany
Diagnosis of MS
- Had back pain and went to ortho doc cause it was going down my leg. He sent me to Neurosurgeon. Neuro surgeon said my nerve endings was butting up against my uterus. Sent me to gyno. My gynecologist called the neurosurgeon and asked why he said that. He went on and on so she interrupted him and said, "how can it be her uterus and fallopian tubes when she had a HYSTERECTOMY in 1987?" Back to square one. In and out of hospital ER's with excruciating pain. Left side of face numb, tingling. Can't tolerate heat and went blind for 10 mts. Ran to a new neuro who said I had a headache. I said no... I don't have a headache. Back to square one. Another doctor told me I had MS... he is a spine surgeon and pointed out my lesion. He sent me to his neuro who didn't even order an MRI of my head but sent me to primary who he said could give me anti-depressants and pain meds. Called the doctor he referred me to? They are not taking new patients. Back to square one. I can barely walk now. NO COMPASSION!
- —Guest Screw the MD's!
- I was diagnosed with MS in Jan 2013. My right eyelid was drooping when I woke up one morning in November 2012. I had a ct scan, an MRI and a spinal tap. The neurologist who diagnosed me said there is no pain with MS. The MS doctor I was referred to is great. She said there is plenty of pain in some people. I am having horrendous trigeminal neuralgia. I have had a occipital nerve pain block and I am on pain medications. I have had constant headaches for over 6 weeks.
still no answers
- My doctor told me I just have osteoarthritis and a lot of women get that and there is not much we can do. He also said that since my mother has temporal arthritis, he thinks I do too! I said Doc, I am adopted, she is not really my mother so I do not think I could inherit her disease. He then said yes I know your adopted but I still think you have the same thing as your mom. I just got up and walked out and have never seen him since.
- I had supposedly the best m.s specalist in boston but I have progressed faster and more severly than most. I would really like to hear some recomdations re good ms specalists especially for people like me who have secondary progressive ms
- —Guest ks
Neurologist not interested I'm my MS
- I have had ms for over 12 years was dx two years ago had 4 relapses in one year, took long time to walk again, had careers coming in 3 times a day. Seen a different Naurologist last week, took him 2mins to do examination. He told me he does not agree with diagnosis and now says I do not need medication and has taken me off all meds. He was so rude I am lost now. As been on neuro meds since first diagnosed. I was made to feel a fraud. Still a little shocked. Some Specialist have no idea, I am worried, going to see my Doctor with all my meds and ask for advice. Shocked too say the leaste. Any comments more than welcome.
- —Guest Lizzylou
should find another job
- About one week after being diagnosed w/MS, a med tech told me , "at least you're alive". My response almost made her cry.
- —Guest Guest in NJ
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..........