How many of you.....?

[Quixotic1]

Recently someone challenged me that people aren't dismissed, disdained, discarded or humiliated by neurologists as often as I seem to imply.  How many of you (with a brief description) have come away from a doctor visit angry, in tears, feeling humilated, or feeling ignored?  How many of you have had doctors imply that your symptoms were insignificant or stress-related or imagined?

After the second year that my first "evil" neuro dismissed me as "okay", despite worsening spasticity and then had the gall to suggest that all I wanted was to get medical testing as an attention-seeker (specifically the LP) - I swore that no matter what happen to me, I was never going to risk that with another docotr and cancelled all further appointments.  See my Journal entry.

I would just like to see a showing of posts on who has been treated this way.

Quix

[Kot1972]

Thank you so much for your "How many of you..." discussion, you returned me my confidence! I am not an MS patient, but I bumped into your forum searching for "conversion disorder". I have a muscle disease - and, believe it or not, neuromuscular drs are no better than MS drs. Unlike many of you, I did have a diagnosis (a rare myopathy) for two years, then I got a rapid progression of muscle weakness in the arms over a year, had a temporary paralysis in one arm recently. First, saw specialists in myopathies - "yes, it is consistent with the diagnosis, go see the best expert in the US on your disease" - saw the guy, he did additional tests, and did not confirm the diagnosis...Guess what - now it is "possibly a conversion disorder", but nobody refers me to a psychiatrist even though I ask!  My neuro is unsure, advises me to go to Mayo Clinic first to rule out physical problems. But - once I mention this "conversion disorder" to any neurologist, I instantly become a walking anecdote, they either laugh at my symptoms, or feel offended because I bother them with such a fuss over nothing. I did not have any psychological issues before, but now, after all the humiliation I had, I do have issues - I don't have guts to go see any doctor anymore, even a dentist. I cry all the time remembering how they treated me after my "real" diagnosis was not confirmed. Everybody was just dying to show that my weakness was "give-way" or "effort was suboptimal". One neuro even made me counting aloud while trying to lift my arm, to "distract" me. I felt so broken and helpless, feeling such a nuts - and I am a scientist with Ph.D., working in physical science all my life, probably not less educated and trained in my field than those guys! Throughout my career, I have been always treated with such a respect by my collegues, but when I see a neurologist, I am treated like a schoolkid trying to get an excuse from school. Thanks again, I am feeling much more like myself now; always been an optimist, but these people just broke me down.  

[ariesfire27]

I've been at home with my special needs 5 year old for the last 2 years or so, for many reasons.  One being I was on the verge of getting fired anyway because I just didn't function well enough mentally & physically to do the job anymore.  Fall 08 I got too bad to deny it anymore, the extreme fatigue, leaden limbs, brain fog, and PAIN.  Spent a year on anti-depressants & a few months getting snapped around by the chiro.  Got worse, not better, and my doctor had the nerve to say I was like this because I was BORED being a mother at home, I was tired because "playing with kids makes me (the dr) tired & bored", that being around my child so much had dumbed down my brain, and depression about that was causing my pain!!  How's that to make you feel like sh*t?!  Insulting me as a mother, devaluing the far from boredom in caring for a child with medical  & behavioral disorders & acting like it was just LIFE!!  My new doc diagnosed the old one as "suffering from a severe lack of imagination" among other things!  YEAH< OK- being a MOM makes you sick!

[cassrox]

My evil neuro #1 - after only doing some basic blood tests and a brain MRI that he didn't even look at - told me that there was nothing wrong with me he could help - that I just needed a good psychiatrist. He said he wasn't going to "crack my brain open and do surgery." Of course I never suggested such a thing!

He even made note that I "surprisingly" had clonus in my left foot. Heck, I didn't even know what clonus was at that point.

After we had a mutatl parting of ways and I got copies of my records from him, I was in total shock at the number of mistakes in them. He told my rheumatologist that she may want to send me to a rheumatologist. I started wearing glasses and had to have them changed twice in four months because of problems with my right eye - yet he reported that I hadn't seen an eye doctor in years and that he suggested I do so. He said he was waiting on a report from an ENT that he never even sent me to. He even sent most of my records to a primary that I don't even see. The list could go on and on...

To say the least, my experience with this guy was very bad. I just hope I have better luck Tuesday with the MS specialist. I'm just glad my primary doesn't  think my problems are "all in my head."

[Quixotic1]

That is a doctor that needs to be dumped!  I agree, what an outrageous and mean-spirited thing to say.  Also, Neurontin is not the end-all-and-be-all of meds for MS.  He sounds like an arrogant, shallow thinker with poor self-esteem.

There are wonderful docs (neurologists) out there.  You need one!

Q

[cainer]

  I will try this again - lost my other message!!  WHOA!!  I  cant believe this!!! Just look at all of us that have been jerked around!!  My first nero  had this thing for reflexes and ran it as HARD as he could in my arch- he said - someone had told him he was cruel for doing that-  imagine - at the time i didnt know the numbness comes and goes with some.. Oh yeh he asked if i wanted ms!!  duh!!   How dunb can a so called specialts be??  well 5 yrs later or so i was told of the blessing i have.  But think of all of us, our quality of life would of been so much better for years if they would just tell us!!!  tick  was surely  ticked!!

[AmishErin]

I called my neuro last year complaining of severe eye pain.  I have had optic neurosis and thought that it felt quite similar.  My eye balls them selves hurt and I had a headache that was in the center of my forehead.  (I had forgotten that I had gotten new glasses 2 weeks prior.)  The pain became so bad that I called his office and asked if there was anything I could take.  My previous doctor had specialized in headaches and had always given me very effective drug treatments.  My new Doctor I think has stock in nuerontin as this is his cure all for all ailments.  He upped my dose of neurontin predictably and it didn't help... so I called back and was given an anti inflamitory which also didn't help.

Then my ophthalmologist's office called to check on my new glasses.  They said because my exam and picking out glasses was 6 months apart from one and other... I told them about my eye pain and they had me come in... turns out that my prescription had changed drastically in that time period.  They ordered me more new glasses and the pain subsided.

About a month or so later I went in to see my neuro and I thought that this might be something he would want to hear about so I reported that the eye pain I had been experiencing was due to my glasses.  He looked right at me and said so your telling me that you bothered another doctor about this untill you got an answer you liked huh?

Bothered??  I was soooo pissed off... I guess he forgets that he works for me... how dare he??

My Neuro is the only doctor that I have ever had that acts like I should be grateful for any medical attention that I eventually get anywhere!