Hypo Gamma Chondria

Well, I am all lathered up about people being told their neurologic symptoms are in their heads, caused by anxiety, or caused by hyper-awareness of our bodily sensations.  It seems we have a new one almost every day.  I consider this attitude by physicians to be one of two things.  It is either pure arrogance such that if they don't know the answer then the patient must be weak-minded or it is a chauvinistic attitude toward women.  This isn't just a rant about the treatment that women get, because we hear the same complaint from men.  In addition to arrogance it is the product of a very mediocre and lazy mind.  Afterall, once you blame the patient there is no need to think further.

There is a disturbing part of our medical and social history that views women as emotionally weak and given to "nervous conditions."  Even though that attitude was dropped from medical teaching 30 years ago, it still seems to pervail in too much of our culture.

I wish there was some way we could go back and throttle Freud who was the huge push in medicine to consider women weak and "hysterical" - who made the latin for uterus "Hystero" (as in hysterectomy)- equal to a fictional mental illness called "hysteria."   Though hysteria had been considered a feminine flaw in previous centuries, it seems that Freud gave it modern and scientific legitimacy.  This was officially taught to doctors up until about 35 years ago, maybe later.  Originally it was considered a purely female problem as we are the only ones with uteruses, but I see the same attitude coming from those neurologists who are so dismissive of so many of us, women AND men.  For people who aren't familiar with this concept I looked up "hysteria" in the Websters Revised Unabridged Dictionary:

Hysteria

Hys*te"ri*a\, n. [NL.: cf. F. hyst['e]rie. See Hysteric.] (Med.) A nervous affection, occurring almost exclusively in women, in which the emotional and reflex excitability is exaggerated, and the will power correspondingly diminished, so that the patient loses control over the emotions, becomes the victim of imaginary sensations, and often falls into paroxism or fits.

Note: The chief symptoms are convulsive, tossing movements of the limbs and head, uncontrollable crying and laughing, and a choking sensation as if a ball were lodged in the throat. The affection presents the most varied symptoms, often simulating those of the gravest diseases, but generally curable by mental treatment alone.

Webster's Revised Unabridged Dictionary, © 1996, 1998 MICRA, Inc.

So, why am I writing this?  Just to bring up the topic for comment and to explain to anyone who is not familiar with this very damaging way of (non)thinking.  It is the beginning of another discussion about the legitimacy of the diagnosis of "Somatoform Disorder" - that is physical symptoms being caused by psychological factors - usually "stress" or "anxiety"  As the veterans of this forum know, I am suspicious that this disorder is anywhere near as common as our experience with physicians might suggest.

I did a thread quite a while back discussing this, but can't find it.  Something like "Psychic Groans or the Real Thing?"  Anyone remember it?

Rant over.  Comments anyone?  Any sociologists among us?

Oh, Hypo Gamma Chondria.  That is our official greek house here.  It is our refuge for anyone who has ever been told it is "all in their head," who has been made to feel crazy, suspects they actually are crazy or is concerned that they will be crazy if all this goes on much longer.  It is for the UnDiagnosed, the MisDiagnosed, and the Diagnosed, but **** ed Off.  We sponsor the Friday Night Wienie Roasts where we can skewer an stupid, lazy, non-thinking, arrogantm dismissive, or otherwise defective doctors while we make our way through the world.

Quix

[Sarahsmom46]

This is such an appropriate and well timed discussion.  You seen to get it right at just the right time!!!

I had a cussion with my PCP on the phone yesterday when she called to let me know that the neuro called her to discuss my renal u/s results and the MS dx.  Anyway, she brought up the old neuro who I was seeing last year who sent her a letter stating that I had "probable conversion disorder".  She laughed and asked if I would like her to let him know that I've been dx with MS and am starting treatment very soon.  Oh, if I were a vindictive type, I'd love to have her throw that in his face.  

His putting the suggested CD dx in writing was not only emotionally hurtful for me, but it also hurt me physically especially when he wouldn't even help me when I had that exaccerbation last November.  I had to go to someone else for help.  He must have thought I was converting stress and anxiety issues into physical symptoms again, unknowlingly of course since that is typical of CD patients.  

Thanks again for bringing this discussion up.  It will be interesting to read other stories from our members.

-Julie

[HVAC]

It goes back even further to Hippocrates.

[missy142]

To All,
I apologize ahead of time for the length of this post, but I feel betrayed, embarassed and that my relationship with my new neurologist has been breached.  I no longer feel conformtable telling him any symptoms I may have from this point forward.  I wasnt going to post it but when I read Quix's post I started crying again and decided to forgo being embarassed and just post it.

The reason I wrote you this email is I was so upset I got off the phone with my neurologist yesterday, and we were discussing my case and what we were doing next.  When he said "You know at some point we have to think about ANXIETY being the cause of some of your symptoms"  Aslo used the "Psychosomatic term".

I cant tell you how upset I am.  I have just lost faith and trust in him. I feel as if he as breached our relationship even though it has not been long since im seeing him.  I no longer feel I can talk to him or see him and report any type of symptom of anything.  Let me just try to give you the facts of my case:

Fact:  C5/6, C6/7 cervical herniations, C6/7 nerve root compression, C5/6 spinal cord compression.
          Treated repeatedly with steroids orally, epidurals, nerve block, and trigger injections pretty good results thus far
          However steroid wear off as we know.
Fact:   Degenerative Disc Disease in cervical area
Fact:   Cervcial spinal stenosis and foraminal narrowing
Fact:   EMG states C5/6 C6/7 radicular pain related to cervical herniations
Fact:   EMG confirms bilateral carpal tunnel syndrome
Fact:   T7/8 (thoracic) disc herniation, mild compression on spinal cord on right side
Fact:   Degenerative Disc Disease in upper and lower thoracic area
Fact:   L5/S1 herniation, EMG states chronic L4/5 nerve root irritation.
Fact:   Brain MRI without contrast (1st stupid neuro, who called me stupid 4x)  several punctate T2 hyperintensities
           in the periventricular white matter maybe related to migraines.

MRI - No lesions in Cervical or Thoracic MRI supposedly. I have no faith in how anyone reads these films really.

In December I started developing paresthesias in my foot, then eventually right side of genitalia and then left.  Then left anterior thigh.  This all happened over a period of about 3 months.

I started to develop extreme lower extremity weakness, started once when I was in the store and had to sit after about 20 minutes felt like i was standing 3 hours. Then about a week later I suffered extreme leg weakness to the point of not being able to stand more than about 3 minutes.  I progressively got better over about a month and a 1/2.  I actually had a cane for a while.  I got totally better from the waist down by the end of April and could have done a cartwheel.  IT CAME BACK AGAIN 1 AND 1/2 WEEKS AGO, I LOOK LIKE A CEREBRAL PALSY PATIENT WHEN I WALK, MY LEGS ARE STIFF, SPASTIC AND SOMETIMES CAN BARELY HOLD MYSELF UP. I IMMEDIATELY WENT TO THE NEUROLOGISTS OFFICE AS HE HAD NEVER SEEN ME LIKE THIS, BECAUSE I DIDNT KNOW HIM DURING  THE FIRST "ATTACK" for lack of a better word.

I was just seeing my 1st surgeon who misdiagosed me with  cauda equina syndrome (which is compression of the cauda equina - nerves in the lumbar/sacral area) that control down below- legs, bowel and bladder, etc. - MISDIAGONOSED  L5/S1 second and 3rd opinion was herniated but not pressing on any f***ing nerves.  He had the surgery scheduled and everything, it started getting better and finally got better after about 5 or 6 weeks.

I have had facial numbness a few times one sided, cognitive difficulties ie word finding problems, studdering at times from it, memory problems, SO

I went to another surgeon who laughed bascially at that dx of the first surgeon and said this is not cauda equina syndrome, there is something else going on. Lets r/o other things. Sent me to a neurologist who did one MRI on my brain, and called me stupid 4x for not going to the hospital when I couldnt walk.  never saw her again.  So I never went back to that surgeon either.

So I decided to go to a neurosurgeon for my neck and to see what he thought about the lower extremity weakness and paresthesias and if they were related to my cervical injuries.  Also told him about the word finding problems etc. He sent me to a much nicer neurologist about 1 month ago.  He has been testing me for MS (which he thought I had, lymes (although im not sure he sent to a good lab), b12, thyroid, etc.

So now that everything is coming up negative, also EEG negative.  They are going to do one more brain MRI with contrast (cause the first nasty neurologist didnt event do w/wo contrast)  and a a special MRI that takes pictures while you are in cervical flexion/extension to see if my herniations in my neck are compressing my cord further as I flex and extend.  Have to get approval for this, we'll see.

So while my injuries are not disputed the neurosurgeon says "Well yes you have all this in your neck but 90% of people with your neck dont have this severe muscle weakenss in your legs" (This can be caused by cord compression, but apparently I dont fit into the 90% percentile.  So he says "Yes its possible your neck could do this but um lets rule out everything else", which is when he sent me to the second neuro.  Who as I said has done all these tests that come out negative.  He still has the brain with contrast to do and evoked potentials which will probably be negative also.  He has NEVER MENTIONED FIBROMYALGIA or anything like that.

So the REASON FOR ME WRITING ALL THIS IS I am so distraught over him telling me "Well at some point we may have to consider anxiety", "NOT FOR ALL YOUR SYMPTOMS OBVIOUSLY BUT FOR SOME OF THEM".

I BELIEVE THAT my symptoms in my lower extremities are being caused by my neck or by my thoracic herniation which neurosurgeon said is too mild (thoracic too mild), meaning the CORD COMPRESSION is too mild to cause the Lower extremity weakness.  And from what Ive read from other people with neck injuries and they have lower extremity weakness, they are often told the SAME thing that THERE NECK IS NOT CAUSING LOWER EXTREMITY PROBLEMS, SO WHAT ITS IN EVERYBODYS FREAKIN HEAD???

SO THE NOW BECAUSE THE NEUROLOGIST CANT FIND ANYTHING ELSE, EVEN THOUGH IM NOT DONE WITH MY TESTING,  SUDDENLY  WE MUST EXPLORE ANXIETY FOR SOME OF MY ISSUES. I TOLD HIM IT IS NOT PSYCHOSOMATIC AND THAT HE IS MISSING SOMETHING.  He said please dont get hostile with me, im trying to help you, im not saying it is, im just saying we have to explore that.  I told him im not exploring anything like that.  I was a psyche nurse for 4 years and I am well aware of what anxiety is and the somatic symptoms people come up with when they have panic attacks etc. I am aware that psychosomatic illness and symptoms do occur and they are very real to the person as the mind can create whatever it wants.  THAT BEING SAID  I do not have panic attacks or any of the accompanying symptoms of that.  And my symptoms can be explained but the f-ing surgeons are too stubborn to admit that cervical injuries can effect motor skills in your legs, EVEN THOUGH WHEN PRESSED THEY WILL ADMIT IT.

And in conclusion its not like I just strolled in a md's office with no injuries and a ton of vague somatic complaints.  I have real injuires in my spine.  I AM BESIDE MYSELF with this, he RUINED my weekend, and i was crying so much, he has no idea of the pain I have been thru since October with all my neck and radicular pain, epidural, steroids, therapy etc.  I feel he is trying to stigmatize me.

thanks for reading
missy

[missy142]

And lastly the conversation with the neurologist he said "Ok you need another dx, you have thoracic radiculopathy".  Like I dont know this, i can feel the pressure in my sternum all the way around the right side of my ribcage to mid back. It feels a bit like someone is sitting on the mid to lower sternum area of my chest. Not to mention the pain in the rib area.  This is from the T7/8 (thoracic) herniation that is compressing the spinal cord, but Im not TO WORRY CAUSE ITS ONLY MILD!!

missy

[Ufrustrated2]

Hey Doc Q,

maybe tomorrow or later tonight I would like to add something but honestly, between thinking about this thread and the "Psychic Groans - Anxiety or the Real Thing?" thread combined with last week, I'm just out of words due to the yin & yang of elation and rage.

heck, i've already started ...

in a nutshell, the MS dr sent me info on 4 DMDs for me to read up on and choose one. we'll discuss that when i next see him at which time he has ordered new MRIs of brain and I think he menioned C-sec. you may remember the last set was at a 1.0T strength. i asked him if the strength would be higher and he said no. i'll give benefit of a doubt but maybe he needs it at 1.0T due to the last set was at 1.0T and he'll use this for his time & space criteria on brain lesions. and of course [their ]radiologist will read it, not the local ones here. you may remember the .7T & 1.0T both returned via radiologist impression as "demyelinating disease".  their radiologist should be better at the MS reading. but this the VA.

saw my local neuro yesterday. an ok meeting. he is leaving all diagnosis up to the specialist. so with that type of situation, seeing him is basically a place holder. therefore now,  i don't get so frustrated with him as it is useless. he only wants to tell me in no uncertain terms that it could be anything, their way of putting off any diagnosis from my perspective. he doesn't talk about my timeline or the MRIs stating the demyelinating disease, never. if this was not the VA then that would be really odd considering what i've read on this forum and the need for certain criteria. he seems to be so perplexed that i have >5 o-bands. i'm just as perplexed as to all the symptoms i've had on/off over the years too.  if they really wanted to get to the root cause wouldn't they prefer to order the 3.0T scans and quit wasting time with the 1.0T? any doctors on this list want to explain that to me?  

how do you give someone DMDs without a diagnosis? is that like giving chemo to a veteran patient without cancer but it satisfies the law of treatment for the VA's unknown illness?   i'm not trying to be funny either.

the bummer tonight is a feeling of what a fool i have been to have believed thise org all these years and try it their way. all the while having documented symptoms and a history.

there is a high percentage of MS in returning military personnel from the mid-east conflicts. bet you didn't know that.  i've read a few of their stories and it would appear the VA treatment for vets with this type of illness always starts off with the long road up hill of "Hypo Chondria & Hypo Pyscho". it takes years to get past that stage unless one is in a wheelchair, bedridden or dead, at least in the VA system.

you know, not one of these doctors has mentioned that demyelinating disease(MS) causes depression but one of them was concerned about the other 3 DMDs and me taking it. due to a side-effect of depression. they don't mind mentioning i've had bouts of depression but never once mention MS or the original med statement on my medical discharge as "depression secondary to chronic pain".

for those who don't know, the wording on med reports in the military and VA is incredibly important. it makes a big difference between how you are treated personally and medically.

you already know my history with the VA and their love affair with
"Hypo Chondria & Hypo Pyscho". my other posts have commented on it a few times.

hmm, i wrote more than i intended. guess i needed ot sound off a bit and also spell check a lot.

happy & peaceful weekend to all,

[Quixotic1]

I see that this is a painful subject.  Sometimes we all need to vent.

Yes, I know about Hippocrates and all, but we have rid ourselves of all the other ancient notions of having bad "humours" and various stuff.  Freud legitimized this for modern times.

Missy, I can just hear your anger and frustration.  I gues these doctors aren't listening to themselves when they say,   "Well yes you have all this in your neck but 90% of people with your neck dont have this severe muscle weakenss in your legs".  WELL, THEN that means that 10% (one in ten) DO have this weakness with your amount of compression.  WTF???   Did you ever hear of the Bell Curve??  Some one is out there on those extreme percentiles!  Arrgghh!!

U2 - I cannot believe that you are getting repeat MRIs on another 1T machine!!!  That sounds like the VA's way of guaranteeing that you don't show any more lesions!!!  How do you live with this frustration??

Quix

[Ufrustrated2]

Doc "Q",

exactly, that is exactly what it sounds like. i'm glad you posted it for the world to see. i hope it helps other vets to see this for what it is.

how do i live with it? i do not really know. part of the reason i'm a bit bummed today is i'm elated he sent me the DMD list to choose from but when he told me 1.0T, i knew their intentions then.  your comment coincides with my gut intuition too.

the local neuro couldn't give me a consult for an outside psych doctor to speak to. i told him i wouldn't see a VA one due there was no reason to trust him/her.  anyone blame me?

i don't want to quit until i see this through i suppose. i can always come here and vent to some degree. i laugh and joke about it all but there is a real serious underbelly to all this that presents a high degree of frustration. lucky i can still work out a little and have a couple of  friends who understand.

U2

[LLWB]

I'm sure I have mentioned before the Internal Medicine Specialist (female) who told me all my symptoms were in my head. There was no such thing as fibromyalgia. And my stomach acid was from eating the wrong things, and my neck was from reading too much. Yeah, right. Walked out of her office and never went back, after a 5 year relationship. 2 Neurologists diagnosed me with fibro, as well as a rheumatologist, ended up with  C4-5 disc removal and fusion, and laparoscopic nissan fundiplication for GERD, one of the highest levels of acid ever measured by the dr who invented the surgery. All in my head???? Seems to me if the dr can't, or won't treat the symptoms or find the problem, they blame it on the pt. Oh well, soon we'll all have national health care, and that will solve all our problems!! (yeah right, what are they smoking, LOL)

Maggie

[wishforchange]

Decided to share one of my private fantasies publicly.  All I need is the financial backing, and for years I have dreamt of opening my own medical school, starting to change from the outset how doctors are trained and the ethos of medicine as it is.  I know exactly how I'd go about it, tighten up the imaginary business plan regularly.  Q you would for sure be on the clinical directorate, if not co-principal.  Think of the thousands of lives that would be saved if medicine was taught in a humane way and the culture of the hospital and primary care overhalled in favour of putting the patient first.

Studied nursing, studying law, have a business background, been ill for a very long time.  If the last issue was to disappear and money come my way this would be my life's work.

Also want to collate a collection of short stories/real life experiences of patients in health care, you probably know I love writing and have an unpublished book (fiction) gathering dust from years back because I never did anything with it.  Want to use my writing as a way of sharing our experiences with the world.  

Re other post you know all is dependant on how and if I get through the coming weeks, but up to my last breath I can dream.

The history of western medicine is very intersting.  It's women who get the short end or the stick mostly (I know there are many men suffering here too), but medicine was never designed for women.  It was about getting the working class man back to work.  In the UK it has been less than 60 years or so that women were entitled to health care at all.  Now our problems are still trivialized.  Example - urinary retention.  Men - look at the wealth of research and efforts to cure prostate problems; women - trreated as hysterical and those who research into the causes sidelined by medicine.  Like all the great people in history, their findings are always laughed off by their peers, until long after they have gone.  

True hysteria is RARE.  RARE.  And the sufferer now would be easily identified by the tests we have available now.  Making a diagnosis before getting all the facts in?  Sometimes refusing to accept the facts as they don't fit in with the prejudices of the doctor?  The wishforchange medical school would terminate their licences to practise until they have retrained.  

If I live through this.  Will do it.  This life has to have been for a reason.  May not live long enough to fulfil it, but have all the right background.  Money will become available, will make sure of that.  Somehow think people who have may be willing to sponsor such a vanture, we've all been at the sharp end of our current system.

wish

[Super_sally888]

Aside from being super tired all the time (the fatigue has reappeared wtih a vengeance), my symptoms are mostly sensory. Being tired is of course from my lifestyle and baby... no matter that i still feel this way after 10 hours sleep and by mid morning...

And these are self-reported symptoms NOT clear Clinical Signs that can  hit a MD in the face.  So of course these symptoms can be ignored and just put down to other things...

Am too scared of being brushed off to bring this up again with my drs... will let them focus on the stuff they have diagnosed and are comfortable dealing with... so at least they'll give me the time of day.

Like having appendicits for 3 months last year and no-one taking my reports of pain seriously because I was pregnant and it is normal for pregnant women to have abdominal pain.... The top gastro at the hospital is the one who didn't examine me, but gave me a metaphorical pat on the head and told me to come back for a checkup 6 months later - after the baby was born. Only when I couldn't walk from the pain did my Obe insist on exploratory surgery and did they find the appendicitis.   So it's not just neuros that need to be roasted!!

Geez!  I do have a chip on my shoulder over that one! Still!

So what? Live with it and pray and hope that it will never get bad enough to really get a proper diagnosis of anything other than I already have.

Or that they may just pick something up incidentally when checking something else (can  probably get myself another MRI scheduled for the pituitary adenoma if I play up the visual symptoms some more...)...

Proud and long term member of hyper-gamma-chondria.

I am convinced it's all in my head!

[Sarahsmom46]

Now that I have been diagnosod with MS, there is a part of me that woudl wants to go back to the idea that it is all in my head.  I know that sounds strange.

Over hte past couple of months I was starting to believe the first neuro I had who made a snap jugdement in my case thatI I had conversion disorder.  Oh, he was trying to appear as nice and caring as he could when he "reassure" me that he didn't think I was faking and that the symptoms are real whatever that is supposed to mean.  But that judgement before he truly knew me really affected the care I was getting from him.

Looking back over the past year when everything went south health-wise for me as well as recalling "events" that are probably related that have been going on for years, I now realize how lucky I have been with these doctors.  While my first neuro was on this CD path, thus not runnig appropriate tests, inevitably another doctor would step in and do what he wasn't doing.  Those doctors included one of this neuro's colleagues who is the head of the practice he is in and the chief of neurology in the hospital that I spent 3 weeks in last year. The next was the neurosurgeon the bad neuro sent me to for a consult. Then bad neuro wanted a 2nd opinion and sent me to a former professor of his who specialized in MS and that guy stepped up to the plate to help me and was the one who finally diagnosed me.

So, sometimes we are just plain lucky and get someone or a series of someones who will go that extra mile for you so you can get some meaningful help and ultimately a diagnosis.

And, just because I finally do have a diagnosis doens't mean that my days of being seen as a "conversion" case or stress/anziety are over.  I'll be ever watchful that no one puts me through this frustrating and upsetting experience again unless my problem is truly anxiety or stress.

[PastorDan]

I'm less concerned with what's in my head than I am with what's been vanishing from it.

If it weren't Sunday morning and the rest of my day not fully scheduled, I might challenge some of you for the longest rant award on this thread.

God be with each of you.  May Memorial Day remind each of us to count our blessings, even though our doctors may be counting sheep.

[sllowe]

Present and dues paying member of the HGC Club

Full membership came when I couldn't talk, walk, think or react and was told "classic stress!"  

Thank you Doc Q for this write-up - you'd think webster would have "redefined" that definition by now - at least to include men - so sexist!

[biowham]

I may have the weirdest story of all, having initially been told that my symptoms for my lower half were "real," but that the ones for the upper half were CD. Yes, I was only half crazy.

Now, a year-and-a-half later, I've had two MRIs that show an upper tspine myelopathy and t2 hyperintensities in the brain in relevant areas, I've had one of the TOP neuros in the country state that I have a cspine myelopathy possibly secondary to MS, and I still do not have a final diagnosis. On the tspine myelopathies, which were described from the second MRI as "a demyelinating lesion," I simply can't get my neuro to commit. Even though it was there in April '08 and there again more clearly in March '09. Even though the spots on my brain change and accumulate. Even though I have clear clinical signs of myelopathy (abnormal superficial and deep tendon reflexes, etc.) and no signs on MRI that it can be attributed to a mechanical cause.

At least, however, no one's telling me I'm crazy any more. I keep fearing that with every doctor I see, one will say that again and dismiss me, and I keep having to remind myself that I have a TSPINE DEMYELINATING PLAQUE, meaning that it is literally not all in my head. And this is from someone (me) with postdoctoral education at one of the top medical schools in the country. I'm stable, sensible, rational, well educated...and yes, female. What the doctors see before anything else is that last factor, and I have NO DOUBT that it influences their behavior. If I showed up with all of the above and testicles? I'd've been dx'd a year ago.

Bio

[PastorDan]

My voice can't get much deeper.  Maybe I should shave my head.

[Ufrustrated2]

biowham,

i don't think the testicles make a difference with these neuro types. and with much respect to the women i say that. with a history of pushing the envelope, it hasn't made a difference in my case to these folks.

though to some degree i know where you are coming from with regards to the bizarre trek to a diagnosis. just take a look at some of the veteran websites regarding this.

many female & male veterans have and are getting swept aside by the medical folks you speak about.

[Fluffysmom]

I've ranteed in the past about my first two neuros; I won't go into it again.

I have a new twist to  this situation; I've been discharged as a patient from my MS specialist and her clinic.  Their explanation:

"We are disappointed that despite our provider's best efforts to deliver a high quality healthcare service, you did not seem to trust her opinion".

I'm about 7 pages into and explanation of why I did not trust her opinion, quoting her chart notes, e-mail messages, failure to respond to my request for a review of chart notes for 5 months, and much more.  

I also give examples that show that her efforts to deliver a high quality health care service fell WAYYYYYYY short.

I will edit it into a factual and professional sounding complaint, quoting HIPPA violations and such, leaving out any emotional reaction that might be interpreted as hysteria.

I hope I will receive a call from my new MS Clinic soon, scheduling an appointment.  

If I do happen to receive a diagnosis, I wouldn't mind if my new neuro would send a report to Dr. Small-vessel-ischemic-disease who felt I didn't trust her.  

Or to Dr. I-think-your-tremors-are-from-anxiety.

Or to Dr. Possible-somatization.

Just dreaming.  I'll leave the past behind more easily once I'm moving forward.  I've been trying very hard for over 15 months to do so, and I hope to be moving ahead soon.

Kathy

[biowham]

Pastor Dan, et al., what I really meant was in the context of my background. I think if I'd been a man with a PhD, med school post doc, etc., they'd've taken me a lot more seriously from the get-go, looked upon me as a sort of colleague (I've had one who has done that). I think maybe Quix may have felt the same way as an MD in a similar situation. ...these were all older neuros, I'm a young-looking 40, and I'm female, and I really do think that these factors made a difference and introduced the idea of "half hysteria" to at least one of them.

I simply have persevered and used my logic and education to remain patient and continue to seek answers. The funny thing is, the neuro I'm with now was THE NEURO who gave me that **** about CD. I came back to him a year later, he recanted and asked me why I returned, and I said, "I'm a patient woman, and at the very least, you seemed interested in finding answers."

Bio

[PastorDan]

Bio, I am sorry; I didn't mean to minimize the inexcusable sexist bias against which I am sure you, Quix, and many other women have fought in many career paths.  Many, many times I have heard people who received a thorough explanation of rules and procedures from one of our female clerks insist on hearing confirmation of what they've just heard from someone else, typically a man.  Funny how it never seems to work the other way around; when a plans examiner like myself (a male-dominated field, sadly) tells someone what's required, they never call up one of the women to question my accuracy.

My only point was that those of us on the opposite side of that great divide have also sometimes felt dismissed and discarded by doctors near and far, and probably by more than neuros.

[biowham]

PastorDan, also please accept my apology if I made it sound like I don't think this stuff happens to men, as well. I know it does. I think that there seems to be a general tendency to dismiss *anything* neurological as "in your head" in the absence of a clear clinical picture, at least on the part of lazy or busy or dismissive or burnt-out neurologists. I try to imagine being a neuro burnout on my 25,000th patient and simply wishing they'd all be straightforward cases...and thus dismissing any tough cases as "anxiety." I can see why they do that, but it's patently bad medical practice. And then more specifically, I think that there's an even greater, specific tendency to do that with us "hysterical" women who just can't handle stress...

Bio

[ampky]

I think the worst though, is when your own family starts to listen to all of the docs.  There is nothing worse than trying to get validity from those you trust.

[Military_Wifey]

I too am a veteran. I have heard how bad the medical treatment at the VA is. My only personal experience with them was on active duty during leave away from any bases...they were wonderful, AND during my claims appeal process....they were HORRIBLE.

Now I could say this was because it was two different facilities, but I think the more likely explanation is that some of the people there seem to think disability payment and treatment comes from their own pocket, and therefore they benefit from preventing us from being taken care of the way were promised when we signed up,agreeing to risk our lives.

I am fortunate that my hubby is still active duty, and thus I have chosen to use Tricare instead. As slow and horrible as they can be, the civilian docs they send me to have been pretty good (save a few). The military facilities docs they send me too seem to feel about spouses as the VA feels about it's vets! We are just a bunch of complainers and are sucking the healthcare funding dry,therefore they should not do any diagnostics, they should willfully misdiagnose, and when in doubt...lie or blame the patient.

Very, Very sad! In any case, the VA has created some MS Centers of Excellence at three locations. Of course that's providing you ever get your diagnosis and live in one of these three states. People covet federal healthcare programs like Tricare and VA.....to them I would say this:
Because you are paying little or no out of pocket expense, they make sure to let you know that they don't have to treat you well, as you get what you pay for ,or rather what you are not paying for!

How easily they forget what is not payed in money is payed in the promise of our lives for our country should it be needed. Why is that so cheap to them? Sorry guys! I'm getting off my giant soapbox now. :-)

-Dee

[Ufrustrated2]

Good to hear you chime in on that. Good to hear like-minded feedback

>>We are just a bunch of complainers and are sucking the healthcare funding dry,therefore they should not do any diagnostics, they should willfully misdiagnose, and when in doubt...lie or blame the patient.

That is exactly how they treat many many vets. one can view notes at hadit.com to see this in real time if one doubts it.

btw, where are the three "MS Centers of Excellence" you speak of?

thanks for you and your husband's service, Happy Memorial Day

[Karen99]

In time, you might want to reconsider your choice to allow your PCP to inform your old neuro of your diagnosis.  I do not think that action would be vindictive, but rather a great opportunity to educate this pickle-head.  It would be a missed opportunity to have this guy pull his head out of the sand.  Yes, it is deliciously gratifying to say "I told you so" in a polite letter.  Vindictive?  Not.

I've done this on the behalf of a family member who was misdiagnosed and treated badly recently.  It was clear the doctor had his head in the sand (somewhere else actually) from the onset.  Another facility made the correct diagnosis and ruled out complications easily.  

It is unfortunate when a patient gets a label slapped on their forehead.

[Nancy T]

Hey missy, I'm sorry I didn't answer this sooner. I was trying to find my neurologist's reports, because what yours said sounded so familiar and I wanted to find his exact wording. I do not understand any more than you do why doctors say, yes, you have something wrong, but at the same time we have to bring up this anxiety thing! They HAVE to? WHY do they have to, when you clearly have physical/organic problems??

Please don't get hostile, he says? He's trying to help you, he says? What planet is he living on when he thinks it's HELPFUL to tell such a patient that their symptoms are due to anxiety??

I know exactly how you feel about losing trust in your doctor--the feeling of anger and the feeling of being unable to talk to him anymore about anything. To prove it, here are some excerpts from my journal that I wrote after I came home from that appointment with my neuro where everything turned upside-down and I felt unbelievably shocked and bewildered. Word for word from my journal entry of Sept. 4, 2001:

------------
[I had been telling him some symptoms,] and that’s when he smiled and really made it clear what he thought--he said that’s the thing, you just have to let this stuff go, and asked me what was my “fantasy” about what all this was....Now why would he say those things unless he thought I were either making things up or just having psychosomatic symptoms and having a fantasy about having a disease? ...

What my “fantasy” is right now, Dr. X, is never going back to another doctor. All they want to deal with, all they know how to deal with, is something completely obvious and straightforward. ...

Why is he playing games with me? Or is he just incompetent, saying I have MS one time and now saying “but that turned out not to be the case”? ...

He said that well, after all we were all getting older, in our forties, lots of times you wake up and don’t feel as well as you do on some other days. ... He said I was going to have to let go of all this....He had said at one point, well, we’re into the whole mind-body thing...

[When I got home,] I eventually got so angry that I threw my sweater down very forcefully, wanted to pound on the bed, lay in bed a long time half watching a Jim Henson version of Jack and the Beanstalk but mostly just breaking out in agonized tears every few minutes and I’ve kept doing it all the time...

I am surprised at how angry I got, how emotional I’ve been, how I’ve let this get to me. I feel that my life has really taken a turn--now I am looked at, classified as, one who is not to be taken seriously ... I hate being one of the tortured “limbolanders”, I never thought I would be given this psych label, and joining that group of people ... Now it appears I could be like those stuck for years and years with symptoms and no answers and pooh-poohed or given conflicting answers by six different neurlogists, but I swear I don’t want to go that route.

What is the truth here? Are they right, would any neurologist agree with them? Or if I went to another one and started “fresh” as so many people are advised to do, would I get a different answer, and if I got a diagnosis from someone else, how much would it mean to me when there was no concurrence?

My confidence in him is totally shaken, I am so very deeply disappointed and angry and again completely rudderless and not knowing who to ask for help and how ... This sadness and anger and disappointment and fear and uncertainty have broken something irreparably, shattered my stupid illusions ...
-------------

So, Missy, does that sound familiar? :) You are not alone!

And here's what HE wrote on that same day (besides getting a number of things wrong about my reported symptoms and trying to "give" me low-back pain, as many doctors do, even though I've never had low-back pain--but that's apparently a clue to "psychosomatic," so they want to put that in there, I guess)... my comments in brackets:

Nancy T. returns for one-year follow-up... She has had no new studies but tends to feel that these symptoms are indicative of some underlying severe illness and is very worried about their implications. She focuses on the fact that I discussed multiple sclerosis with her on one occasion.

[Me here: Uh, does bringing up MS at the first appointment--even when you know the patient has previously had a normal neuro exam and a normal MRI (though it was later re-interpreted by the same radiologist as having small nonspecific lesions)--and then talking about MS over and over and over, and then, when the patient mentions the buzzing and pulling when she bends her head down, saying flatly "That's MS"--that's more than "discussing" MS, that is essentially telling the patient she has MS--wouldn't any normal person conclude that's what he meant??]

Overall, her examination is normal...Multiple sclerosis remains in the differential [he didn't tell me that] but the pattern of symptoms is not suggestive of this condition. She does have a history of an abnormal ABR and a sudden hearing loss so I think at some point we might want to do a lumbar puncture as I have discussed in the past. [Later he did schedule me for an LP, but then made it clear I didn't need it, so it never happened.] I simply think that she is overreacting to the symptoms to a large degree but we need to respond to this in some fashion. [In other words, she's overreacting by asking questions after the doctor all but told her she has a chronic, progressive disabling disease that needs early treatment, but we have to do something to pacify her and shut her up.] She has an ever-expanding problem list which is quite problematic from the medical standpoint. [There's a reason they call it MULTIPLE sclerosis!]

I have sent her for a CPK, acetylcholine receptor antibody, sodium, potassium, and calcium. I have requested authorization for an EMG and nerve conduction study of the legs. [He did the blood tests but never did the EMG and nerve conduction study, even though my insurance would have approved it.] Following that, and I do expect these tests to be normal, I think she is a candidate for a lumbar puncture as I think we need to do something to fully rule out demyelinating disease [that is, we need to convince her she doesn't have MS, after I myself put the idea into her head].

[And here comes the kicker:]

I did open up the discussion about psychology and the mind/body interaction with her and why she was interpreting these things as so serious but gained little headway into insight in this area.
---------------

Isn't it funny (ha ha) how so many of us have had the same experiences.

If that expert forum ever opens up again, I'll pay $25 (or whatever) to try to get a neurologist to explain WHY they feel it so necessary to bring up the stress, anxiety, somatizing, conversion-disorder, etc. stuff to a person who clearly has organic physical problems and/or who has not yet had proper investigations and follow-up done. And more important, I want some neurologist to answer this question: Does your profession have the SLIGHTEST idea how harmful this is to people?

The length and emotional force of this thread, and others like it, are testimony to how much psychological and physical harm is being done to patients by this attitude of doctors. They think they're helping, no doubt; but they don't have a CLUE that they're making things ten times worse.

Missy, I don't envy you having to sort out neurological symptoms when you have spinal damage. I just hope you can find a doctor who takes you seriously. You'd think when you are having so much trouble walking that they would go all out to help you. You'd think.

Best wishes to everyone who's been through this and similar stuff.

Nancy

[Nancy T]

P.S. And I am a person with NO previous history of anxiety, depression, stress, trauma, etc... no mental disorders of any kind, never been in a car accident, never been abused, never abused (or even used) ANY drugs or alcohol, never been in the hospital except for childbirth...not seeking disability or sympathy from my family, don't have young kids... they have no reason to blame my symptoms on anything else, yet they HAD to attribute my reasonable questions and concerns to ANXIETY. They just HAD to. It's like a sacred ritual they have to perform when the MRI and exam don't scream MS (or something else).

[rudyhorse]

It seems like many of us needed to vent!  I don't have anxiety Ha I am depressed LOL, which was said by a Neuro now retired, and my FP Dr and all other I see laughed also, as I am the last person to get down.  Not that I don't I sure have been lately, but my Dr actually informed him that he missed the mark on that one.  So he wanted to see me again, I declined.!

Over the years all of us have had such horrible experiences, and I am sorry anyone else would ever have to suffer someone questioning your knowledge of yourself- it is such an intimate thing to me--it my sense about me, my body and emotions, how do you know when you are not me?  For me it is my family who is the worst, despite Dr support.  I can empathize with the true betrayal you feel when others demean us this way.  That is my feeling on the matter.  What they say ect doesn't matter as far as medical terms, bottom line is it demeaning to a person.

Their diagnosis to me is "idiopathic" the idiots don't know what is wrong with us, and don't want to admit it.  Rarely would want to call someone an idiot but behavior may warrant it.
So I am sorry any of you have endured this, but it isn't your problem it is theirs.

[Military_Wifey]

Thank you for your service as well! I poked around on the VA's website and found they have a lot of information on MS. I was medically discharged in 2004, on their site it says if you're diagnosed within 7 years of discharge then your MS will be service connected, and the minimum rating is 30%. Not sure when you got out but thought I would mention it.  :-)  The 3 Excellence Centers are in Seattle, Baltimore, and Portland. Here's a link to their page to save you some time.

http://www.va.gov/ms/

-Dee

[Ufrustrated2]

thanks for the info! really appreciate it.

hmm, Seattle and Portland, could be mind boggling possibilities. i do have a thing about diving in the ocean and hanging out in the forests. [somehow gotta get my energy/stamina back on track].  and too, it is a bit cooler on avg there versus where i am currently.

we'll keep an eye on the six and we'll all get through this some how ... many thanks

[Military_Wifey]

LOL. Hey when we get good days we got to enjoy them right?! I am hoping Uncle Sam will send my hubby to Ft Lewis next. Then again, if that's where we want then maybe I should be asking for Texas. :-}

-Dee

[Ufrustrated2]

those good days feel so great! had one today. felt like i was in my 20's it felt so good. like i'm on cloud nine and want to go to some adrenaline things. a false sense of security for me though, due to these great days do not last for very long but heck i'll take what i can get. i ain't that proud.

we used to call the duty station req's, "dream sheets" for obvious reasons. sure, your husband will stand a better chance getting duty at Ft Lewis if you request the 38th parallel or Ft Hood. gotta love it!

Cheers!

[brice1967]

Uhm, just because somebody has anxiety or is otherwise anxious, it doesnt mean that they are weak minded.....

[COBOB]

Brice, welcome to the MS forum.  I'm a bit South of you in Northern Colorado.  Most of the group here has MS or neurologic symptoms that might be MS.  Many of us have been called crazy, hysterical, anxious, hypochondriacs, etc. by relatives, medical professionals, coworkers, etc

It's an older thread, and Dr. Quix (being one of the sharper of our bunch) would not accuse any undeserving person of being weak-minded. Much of Quix's commentary is said with a wink and a nod.  I think most of us reserve the "Weak-minded" comments for some of the neurologist we have had to deal with over time.  

In all fairness, both of mine were pretty good.

Bob