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

[Rena705]

I have seen three neurologists.  The first one was in 1993 and she was WONDERFUL!  But she moved back to England and I was tossed into the lap of the Evil Neuro/Researcher number 2.  He is the neuro that diagnosed me with MS but I didn't stay with him for very long.  He has no personality, has very little time for women, doesn't like to be stumped on anything because he thinks he knows everything.  I then proceeded to my 3rd neurologist.  Now she seemed alright and followed me up every 2 years with an exam and then BANG in October 2006 I started to have problems with the pain in my temple and my left eyelid drooping.  She treated me with IV Steroids and weaning prednisone and sent me on my way with no diagnosis.  Then in Feb. 2007, I was struck with this pain again.  I attempted to make an appointment to see whom I considered my neuro and mistakenly assumed that she would be there if I got into trouble but apparently I wasn't sick enough to see until 3 days later...I was in excrutiating pain and needed help NOW!  I went to a clinic that my gp works out of and saw a dr. there and she referred me to a neuro at the University...low and behold it is the second neuro that I HATED but I had no choice.  He sent me for IV Steroids and weaning prednisone and diagnosed me as having Paratrigeminal Neuralgia and he said "I will treat you for this as long as you see no one else about this."  Of course I agreed...he was going to treat me!  Well, he treated me alright...he overdosed me on several medications, never did an MRI until I had severe vertical double vision (for which he advised me to see my gp to see if she could get my emotions under control) 10 months later and when the MRI came back positive for MS...he advised me to seek a second opinion!  A lot of bloody help he was!

So I go to my gp and tell her that the neuro at the University wants me to get a 2nd opinion so I would like to go back to my 3rd neuro.  She states that she is not sure that the 3rd neuro will see me because of the incident last February and the fact that I did not give her a chance to see me!!!!  She was the one that wouldn't see me for 3 days and I needed help that day and after the 2nd neuro said he would treat me if I didn't see anyone else regarding this what the he** was I supposed to do???  I explained all of this to my gp and she apparently sent a letter to Neuro number 3 "apologizing" for the "mistake in judgement" (what a friggin joke...her panties were in a knot cause I saw someone else because she wasn't doing her job!) and she agreed to see me.

I saw her in December of 2007 in one appointment and she deemed my MS as being "in-active" and said that all my problems were due to the "other" neuro over-dosing me on my meds!  Well I am off all of the meds he had me on and I am still having difficulty cognitively, pain in my legs, problems with my equilibrium, severe sensitivity to heat, overwhelming fatigue and deteriorating eyesight (that has been checked by the eye specialist and deemed caused by something neurological)!  However, I am still not on any of the disease modifying drugs.  This evil neuro also told me at my appointment in Dec. 2007 that she will not be dealing with me directly, that I will have to deal with her through my gp.  My gp received a letter from the evil neuro stating that my MS is "in-active" and she will not even consider that any of my problems are due to MS.  My gp has stated loud and clear to my face that "I really don't know very much about MS"!!!

So, I am not  a limbo-lander per se...I have been diagnosed with MS twice you could say but I am not getting any treatment for it because my evil neuro has deemed my disease in-active by the MRI that the second evil neuro did in Nov. 2007. (bloody lesion counter!)  I have had one appointment with the evil neuro number 3 and I don't see anymore in the future because no one believes that I have MS and that it is active (at least anyone in the medical field!).

I don't really know which is worse...not knowing what it is that is causing the debilitating difficulties in your life (limbo land) or having a positive diagnosis of MS TWICE and still being told that your disease is in-active and therefore requires no disease modifying drugs which in turn will mean that I have nothing to slow down the disease process and the results could be catastrophic and there is nothing (so far) that I have been able to do about it.  I have been taught through this whole dilemma that I can't trust people in the health profession much...why would I when my gp has blatantly lied to me several times and my evil neuro won't offer me any help and has made me feel totally alienated.  Even the MS Society wouldn't help me find a new neuro for fear of me being black balled by all of the neuro's...I figure that it wouldn't make much difference...I am getting no help now, am I?

Rena

Rena

[ohwild]

It would seem that nearly everybody has had a really bad experience with one doc or another and been dismissed as attention seeking or crazy, which is so disheartening for people, no wonder prople get depressed when they are at the mercy of a bad neuro.
I hope you will be able to put these posts somewhere for the new people on joining the forum so they can see that they are not alone
CJ

[IUMOM2]

I've thought about how neuros treat patients off and on for the past few years. This may be stating the obvious, but I have to believe that those of us who are the hardest to diagnose are the ones who receive the worst treatment by the neuros.

I'm sure it's because we frustrate them. Maybe it makes them have to think too much? Maybe this same thing is why those who are easily dx'd don't as often get that feeling of being dismissed, and therefore don't understand some of the frustration that many of us go through.

Of course, every patient deserves to be treated with kindness and respect and needs to know that the doctor is trying to do everything he or she can do help them whether they are dx'd or not.

I may not be making sense here (entirely possible).But, I am trying to make a point. What do some of you think?

I agree, how sad this is.  Hopefully, we can make some changes.

[nikki861]

My first Neuro I saw, I felt like he dismissed me. He only saw me once and looked at my MRI. I was furious. Immediately found another one to take his place. This one is at least trying to help me.

[Sunnytoday]

This list is growing longer every time I check- how sad!
I'd like to say that for now, my new neuro has committed to helping me find out what's wrong and has stated that it's "probably MS" just from my neuro exam and sx. He didn't read the MRI I brought with me, and he booked an appt. for two months from now and didn't start any treament, waiting to see results from previous tests and a VEP scheduled for next week.

It appears that this is a list about neuros' that don't seem to care, but I'd like to say that there are many other doctors out there who fall into the same category, and unfortunetly I've had several of them.

I went to a gastroenterologist who didn't care that I'd lost 25 lbs, and was in constant pain. It turned out that I had a dysfunctional gallbladder that was finally removed by an understanding surgeon.

I went to a allergist who refused to read my transfer records and declared that I was "faking my allergies" and wrote a rude letter to both my family and my kind pervious doctor- in spite of allergy testing that proved otherwise.

My most recent doctor disapointment was in a local rhematologist. He saw that my shoulder dislocate easily when they are pulled on, and then dismissed my joint pain. When we pressed him for tests and answers, he obliged by x-raying my hands, the only joints which didn't hurt and only testing me for Hep. C. I felt so upset when i left the last time, and so I went to another doc. who properly x-rayed my hips and tested for lupus, rheumatoid, and others. While I didn't receive a diagnosis- I felt cared for at the 2nd doctor.

my prayers are for each of you that both you and I may find understanding doctors who are willing to "fight for us" on our journey.
~Sunnytoday~

[shoshin]

Wow, it is depressing to read all these stories of unnecessary pain and frustration.

I guess I'm fortunate that I never saw an obnoxious neuro or was told that it was all in my head. On the other hand, I was extremely frustrated by the fact that my symptoms were minimized and that I kept getting told not to worry so much despite the fact that I felt like my body was in a slow, steady decline, moving inexorably in a direction I don't want to go.

Last June I went back in desperation to the first neuro I saw about these problems, who did a whole new patient exam since it had been a while and then came to the conclusion that I had "hypersensitive nerves." At that time, the two neuros I had seen said I had idiopathic peripheral neuropathy. Six weeks after being told it was just hypersensitive nerves, I saw a PN specialist who did more tests and eventually turned around and said I didn't have PN, I have MS. I don't think there was any significant change in my condition over those six weeks. The only thing different was the doctor. The right doctor really can make a world of difference.

sho

PS for wonko: about never getting the spinal tap because "it would be wasting everyone's time." The same thing happened to me where when I pressed the local neuro for another step. He would suggest something, but then belittle it as a waste of time. I let him talk me out of a repeat MRI (why he thought that even made sense if he was sure I had PN I don't know). In retrospect, I could kick myself, but at the time, I didn't know any better and stupidly believed what I was told.

PS for alastria: I really enjoyed the How Doctors Think book--definitely gave me a different perspective