If that isn't the darn truth. Even female doctors can be guilty of slapping a label on another female. She was all to willing to see me all too regularly (and take my money, and a lot of it!) until I started a fast downward spiral. She dumped me like a hot potato - didn't refer me out, nothing. I don't think so...............I showed up for my appt. that she tried to cancel feigning illness. I sat her little self down and took her to task, double vision and all. The REAL problem was not me. My illness was beyond her expertise, she admitted it and suggested I travel out of town to get appropriate care.
Too many doctors hold onto their patients when they should be referring them out. WTF. Sometimes I think they consider us like cash cows. They are only human and not the gods some like to think they are.
With that said, they are some wonderful doctors out there who truly place their patients needs above their own egos.
You're not an NBA player or a movies star, a senator or TV news anchor, so you're unlikely to get the kind of public attention as a former Blazer.
You have a cyber-family of support, and I don't think we've joined any consensus that you're some kind of hypochondriac; I didn't join up!
It is normal to feel so frustrated and discouraged, I think a lot of us have felt slightly neurotic at times, and I really feel for you. But, dear lady, you are not lacking in courage, or you wouldn't have kept looking for answers, you wouldn't be here with us. You are not some neurotic female sitting around, telling strangers how the world has conspired against you.
You are strong enough to keep on truckin', to help others with the sharing of your experiences and what you've learned, to have a sense of humor about all you've been through.
I can understand the bitterness at Dr. RR, but he has his limitations, apparently. I've had many such doctors over the years, from a gynecologist, several urologists; don't get me started into my quest for answers about neurological issues!
I hope this post has helped dispell some of that bitterness; it can really eat at you. I know, seriously, I know.
Great post - I can relate totally to it also -having been dismissed by so many myself over the years I am also totally convinced that middle aged women with the sort of issues that we all suffer here are actually INVISIBLE too.
I agree about the bitterness also but it's is so hard not to be.
Hi, me again, just wanted to say that I did "get it", what you were saying with your post; it was just an automatic reflex to tell you that you're none of those things.
I've lived it and fought it and I just keep on fighting, even for my friends.
I have three neuro's worth of bitterness to let go of, and it really hangs on; like i said, I know.
You are anything but lacking in courage. Your sound (not neurotic!) advice was very helpful to me while I was undiagnosed (with what turned out to be tick-borne infections).
You are not in an enviable position, but you handle it well, even taking the time and interest to support others.
Hang in there.
It takes a LOT of courage to keep plugging away for answers even though doors keep closing on you. We just keep turning all the handles of every door we come across until one opens. One that has a caring and compassionate doctor behind it who not only says he/she will get to the bottom of what is wrong iwth you, but actually follow's through.
You are courageous, truly corageous. If you weren't you wouldn't be writing what you wrote and would have probably given up long ago.
You are couragous. And you are strong. AND you will find the answers you are looking for.
Hi folks, thanks for the comments--you are all very nice. However, I intended my "obviously lacking courage" remark to be tongue-in-cheek, ironic--meaning that people generally don't give credit for another kind of courage: that which is needed by ordinary (non-famous) people living their lives with a chronic disease or, even worse, with undiagnosed but difficult symptoms. I should have been more clear about that!
My point was to draw the contrast between the breathless praise and attention showered on famous young people with clear diagnoses and the dismissiveness shown toward certain other categories of people with health problems.
I am not bitter anymore; I just felt a great deal of amusement, with only a mild streak of irritation, upon seeing that news segment last night featuring my onetime neurologist.
Karen: Oh, yes, I agree with you that female doctors are FAR from immune from dismissing patients; the worst one I had was a woman, and the best one is a man! Also, men aren't exempt from being dismissed; my father--an engineer and a lawyer--had his complaints dismissed for years until, surprise, they did an X-ray (this was 1968) and found a fatal brain tumor!
Julie: Actually, I DID give up long ago on getting a diagnosis, so I'm rather an anomaly or a heretic here (but one with relatively mild symptoms). And I really don't know whether I'll find any answers. Not everyone does. But I'm glad you finally got diagnosed. I think that having a neuro diagnose you after the NIH couldn't (if I'm remembering correctly) just goes to show how arbitrary the whole thing is, how dependent on individual opinions. As if we don't all know that already!
I smugly rate the majority of the people on this forum higher in the courage department than the basketball player, although he will no doubt EARN the right to be called courageous as he lives through years of a progressive disease, like most of you are doing.
Best wishes to you all,
Apparently, according to my last N.H.S neuro, the symptoms displayed are all " stress".... so all you lovely people out there alongside myself just need to " de- stress your lives ".... so you can all be " cured ".....
Do they think that a few days "happy time " is the cure of the evils we endure ?
Why are the people in this proffession if they seem to beyond the basic ability of compassion, I thought thats why they wanted to be there to start with huh !?
I must be so nieve ??
Oh yeah I know...the money...the ego... the power...its so much of a temptation not to get drawn up in the flow of the medical " team game "... to get to the top of your league....you forget that the ability to do that encompasses the fact that you have to dismiss other mere humans that are afflicted with ..." mind and body stress "...poor souls!!...just show us your money and we will "party " on you for a while till its out of our league, we may pass you on to "PLAY" with our fellow consultants for a while!
How can these people have morals like this to be able to knowingly accept this on a daily basis , its beyond me ??
I am off to see a "new player".... another neuro on july 6.... what tactical game play he will take we shall see hey !....perhaps if I went to a private doc and "flashed the cash"... would I be on the wiining team??? ( in uk we have no insurance system, its NHS-free healthcare via national insurance through tax system or private via health plans or cash on the table !!)...
Time will tell.....this seems to be a game of two long halfs..... the pre - illness and the life whilst being in limbo of diagnosed or fobbed off for many years and life after ...... to whom with m.s has many a moment of trials on all inconcievable levels of life enduring moments!
Rock on july 6........the game continues....!?
I find that usually we only find things funny when we see or feel a bit of truth in them. So while I detected your tongue-in-cheek tone, I felt it nonetheless appropriate to affirm that you're not crazy :)
In my case I actually gave up too. I decided that I probably will go undiagnosed and was finally content with jsut getting some relief from the symptoms so I could have a more normal life. What happened the other day was kind of like a woman trying and trying to get pregnant and then when she finally stopped trying - she got pregnant.
As far as the NIH, it wasn't that they couldn't diagnose me, it was because they have such a stringent relationship with the McDonald Criteria, they have to because they are doing research. I get that. The just could not commit to a dx because of the rules that they have to operate under. And, this particular study was not in the business of diagnosing anyway. I don't know if you have ever considered doing a clinical study, but if you get an opportunity I would reccommend it as you can learn so much.
With that said, I did get the T&C aspect of your lists, finally. It was very clever and something we can all certainly relate to.
You and I have something in common. My father was 49 when he was met with the same fate and dx as your father. He was misdiagnosed with asthma when he experienced difficulty breathing due to increased intracranial pressure. The numbness he experienced was misdiagnosed as Bursitis. The true cause of his symptoms would have been obvious if any of several doctors he saw actually performed a rudimentary physical examination.
This partly explains why I go on rants occasionally about the need for thorough physical examinations. It seems to be a lost art. Needless to say, I'm a bit "sensitive" when it comes to anything neurological, for myself or others.
I just wanted to add that it isn't just "middle aged" women who are blown off. I was 27 when my second child was born and started having sensory sx. Okay, by the time I saw the neuro I was 28, but still not middle aged. I was in graduate school and when after a thorough investigation he couldn't find anything, he blew me off as a stressed out grad student.
I too decided to quit looking for answers for many years. There were some things along the way that I in retrospect were more sx, but it wasn't until the trigeminal neuralgia, ataxia, mild weakness and incoordination struct this past winter that I started looking again.
Well said. I have been there...got a dx and am now " courageous" However, I am turning my daughter-in-law on to this forum now because she needs it. She is being knocked down by a myriad of symptoms that no one can seem to figure out. It makes me sick. She is such a hard worker, and now needs so much help. Thank goodness my son and grandchildren are there for her in a big way.
We gotta hang together! SOMEBODY needs to figure out what is making everyone so sick...I have a hunch it's our environment....
My comment on the middle-aged invisibility was related to work also not just here, and so wasn't intended to be exclusive - it's an 'in' joke at work between me and some other ladies as so many of the men tend to talk over women in a conversation - watch for it the next time you are in mixed company.
My daughter told me about it when she was studying psychology - something to do with gender and upbringing etc.
It gets quite funny when you people watch - only nit funny when you are talking to your neuro :-)
Harleon--yes, many people receive the "stress" diagnosis; it seems to be pretty much routine for many doctors to say that when they don't know what's going on! Frustrating, isn't it? I never got told "stress," but I got the "anxiety" label.
Wonko--you are correct, and thanks for the affirmation! :)
Julie--yes, maybe the getting pregnant analogy has something to it! My new PCP would refer me to a neurologist if I wanted, but I don't think anything would come of it, given the lack of dramatic new symptoms. I've tried to get into 2 studies (not on MS) but was rejected--once for having too-good bone density, and the other--a shingles-vaccine study--rejected me at the very last minute when the doctor saw my chart--I already have paresthesias, so I would be an unreliable subject, I guess. But I got to keep the thermometer and the gift card they'd already given me, what a deal! :)
Karen: so sorry to hear about your father. How old were you at the time? My father received the diagnosis of being "just fat and lazy" and was told he was sleeping all the time "to escape a hysterical wife and five small children." And this was in 1968, so even then there were careless doctors. The surgeon later told my mom that he didn't know how my father had walked into his office, since his pituitary gland was eaten away. I never became "sensitive" about things until all these weird symptoms started at age 42; never saw doctors before then except for a broken arm once, otherwise maybe once every two years for female checkups.
Hi Stephanie--yes, you're right it's not just middle-aged women. Young women get it, too (prime age for hypochondria). It's just that middle-aged women are a rather juicier target because docs can throw the "menopause" thing at them (and there's something to that, of course, but ASSUMING the symptoms are due to menopause is often incorrect). I just helped a refugee woman sort out her insurance paperwork--she'd had a brain tumor removed--for months she'd been insisting to her doctor (a woman) that her headaches were different from the migraines she'd had all her life, and the doctor kept saying stress, migraines. She finally went to a different doctor and voila, MRI, brain tumor found.
Mary Kay: best of luck to your daughter. Glad you got a diagnosis, at least.
My sentiments precisely!! If we are female and postmenopausal, we must automatically be depressed and neurotic - right??
Only thing I would change in your post is under "How To Be Neurotic" statement #4: Why restrict it to "local" neurologist? I spent big bucks to hear the very same statement (I think it must be the current in-vogue neurobabble) from the top neuro at a prestigious institution far away. It seems most neuros must have graduated at the bottom of their classes!