Ahhh, just the place for my newest rant - but this time it isn't about a neuro. As you know my niece is still in the hospital after having her post-op knee drained and washed out from both an infection and ongoing hemorrhage. The family (mostly me) are sure she has Von Willebrands Disease of difficulty clotting. This disease is a pure genetic one, meaning one half of all the children of someone with it, gets it.
Well, my dad and two of his brothers have bleeding problems. His sister has almost bled out (fatally) twice. I test positive for it. And my niece could be the poster child for the disease, having all the classic symptoms: post-op hemorrhage for a tonsillectomy age 12, seriously severe menstual periods, ongoing iron-deficiency anemia, easy bruising - you get the picture.
VWD can be hard to prove with the blood tests because many things make the Von Willebrands Factor (the protein that is deficient) go up and down, so false negative tests are common. She went to see a hematologist with this history and her blood tests were low normal. She was told that not only she "Absolutely Did NOT have Von Willebrands, but that the doctor doubted her family history."
So now she's in a hospital with her knee still draining blood 48 hours after surgery. The surgeon said that her bleeding during during the operation was something that he had seen only with VWD and hemophilia.
Arrogance - from a specialist who should KNOW how hard this disease can be to nail down!!
That's my rant!
Offended and Angered Auntie Quix
Well, mine is short and sweet. Happened this morning at my appt.
First off, I have been up the most part of two days from spasms in my thighs. Can hardly walk, and in terrible, take your breath away pain.
When dr first comes in and we start talking, (she already knows I think it is MS) I mention these spasms. She looks me dead in the face and says that you don't have muscle spasms with MS!!!! Well, duh.....
I was speechless!! And my DH just kinda grunted real loud.
As I was having my LP, my former neuro made the following statements to my husband:
1. (Concerning the fact my MRI had not been read) "Well, that wasn't my fault!"
2. (When my hubby asked what we do if the LP is negative) "Now, you don't want us to run around chasing a diagnosis - do you?"
3. "We may need to look at the possibility of psychosis."
You can imagine my discomfort as this defensive neuro is performing my lumbar puncture, while becoming ever more agitated with my husband. Unable to move and with by back to the group, I had tears streaming. This is when the most idiotic statement fled his mouth . . . .
4. He compassionately asked, "Are you doing okay there?" Just as I was opening my mouth to answer, I realized that his head was turned toward his student observer. He was aking her how she was doing . . . he never checked on my condition.
Guess I should not have been surprised, when I ended up carrying my own spinal fluid downstairs to the lab. After the LP results came back, he diagnosed me with MS (according to nurse over the phone). I never went for my follow-up appointment.
me, me, me,.... One of my neuros told my husband, "I don't know what she has but I can tell you that she will only get worse and worse until she is finally bedridden".
Hmm...How did he know all that was going to happen to me but couldn't tell us what was wrong? haaha
We still make fun of that one.
I'll be praying,
Okay, this one I just thought was kinda funny (considering my cracked sense of humor) from my well loved local Neuro guy..........
When I first went to the neurologist, and hadn't received my prison sentence, uh...I mean...MS diagnosis..........(which beats the heck out of prison if you ask me, with my luck I'd wind up in a cell with a girl with facial hair and a penchant for canes.........) I asked the Neuro, do you think I should get a handicap sign for my car?
At this point I was using my cane, falling down due to my knee "disappearing," with serious pain in the lower part of my back. The neuro said he thought it was a peripheral neuropathy and was almost convinced, although there was a "slight" chance it might be MS. The neuropathy would eventually heal, he said, but I ought to have a handicap sign for my car in the meantime.
He wrote me a "prescription" for one. Imagine my surprise when I received it from the DMV and it wasn't temporary. It was PERMANENT.
I said to myself, "Hey Self? I think you're gonna have a problem here...."
At that point I hadn't started answering myself. Now? I chitchat with myself. Maybe they'll take me away to the happy home, with trees and flowers and chirping birds, and basket weavers that sit and smile and twiddle their thumbs, ha ha...ho...ho..hee... hee....ha ha....uh....
Oh My God!! I just gave away my age.............
Whatever you do....don't read this post.......... lol
YES, YOU DID!!
Remember when you went away and I got down and my hands and knees and begged you not to leave because I'd go berserk?..........Well...You left me any how and then the days got worse and worse .......(insert words)....and now you see I've gone completely ou of my mind.
They're coming to take me away ho ho, he he, ha ha.......repeat. (note that the basket weavers twiddle their thumbs and toes) If the next verse comes to me I'll post.
Thanks....for the memories....
Risnerrose! Holy C rap! I forgot all about that LP of yours!
Mere and Quix, was thinking you 2 must be pretty durn far out there, until......my light bulb went off... I started to hear the words in my head...lol
Who's got more?
Granny Carol! How nice to see you!!!!!!!!!!!!!!!!!!!!
At least you got a handicap sign for you car. After talking to my PC about my cardiac/lung problems where he said that I will never get any better I asked to get a handicap plate for my car. When I got the form back from him he had marked it as TEMPORARY. But since a temporary handicap sign requires how long you will need it (which he didn't put in) the form is of no use to me. He also didn't put in that I use a cane to walk. It takes 2.5 hours each way to drive to Nashville to see him.
I guess my most interesting quote was some 20 years ago when I first started getting symptoms. My PC referred me to a Infectious Disease specialist who spent about 20 minutes talking with me. He then said I was depressed and needed shock therapy in his report to my PC. I was in total shock when my PC said this. My PC, to be on the safe side, then referred me to a psychologist. I spent 2 hours talking with the shrink after which he said that I had one of the healthiest minds he had ever seen. After that report my PC then started to run tests of all kinds in order to try and figure out was going on with me.
I've lost track of the number of doctors that have said I'm depressed since then because there have been so many. In their note they always say the same thing. I never smile so therefore I'm depressed. I don't know about others but when I am in a lot of pain, tired, and in general feel bad I just do not smile. And since I usually feel this way it is no wonder they don't see me smile.
I've got a couple, well lots and I have posted them before but they stick in my mind and make me fume every time I think of that GEEK (neuro) saying them.
Me: "I am having trouble with heat and more so when I am out in the sun, it makes me nauseous, my symptoms increase, I feel dizzy and tired. I find I have to go to bed and lie down, then I sleep for hours."
Geek:" Well, don't go outside in the sun" he then laughs out loud....
Me: "Well, why am I having all these symptoms, and why do I have so many T2 hyper intensities in my brain, what could this all be?"
Geek: He looks at my file and then notes my age (50) and this pearl drops out of his mouth:
"Well, you are getting OLD you know!"
Me:" I am feeling dizzy and the floor moved in waves and I have nearly passed out in the supermarket, I had to hang onto the trolley. This has happened several times over the past 2 weeks. I am scared I am going to faint on the floor." He then takes my bp lying down sitting up. No difference, it isn't my bp.
Geek:" Well, it's not your blood pressure so you had better go and see your Doctor"
I think I'll draw his face on some balloons and every time I think of the **** that came out of his mouth I will stick a pin in his face and watch it burst!
Oops, sorry everyone, I said a bad word, I didn't think it was quite that bad. I hope I haven't offended anyone.
Make that word "rubbish!"
Upon seeing that my MRI was normal N2 said "I guess we ought to take you out back and shoot ya...."
When I was in the hospital back in July, I had some pretty horrible Dr's, like the Professor of Rheumatology coming in with about 10 of his students, he did not once look at my joints but told me that I dont have any rheumatological process going on and I could not have Stills disease. How can one say it is so, when they wont even look at you? Or read the right med file!!!
And the dimwit who was looking for fluid in all the wrong places on my ankles, the nodules I have are pretty self explanatory but that idiot would not run that little wand over my huge pocket of fluid, I just wanted to smack him right across his face. So much for that test they were supposed to do...And please, please, don't let him graduate med school so he can do tubal ligations from the ankles....
I could go on and on about my nightmare of a hospital stay, and get this guys, three months later, I finally get to talk to a Dr about the bone marrow results. Good thing they scared me for nothing with the leukemia bit, right? I was scared sh it-less, good thing I go to some of the "best" Dr's around my parts, they were probably just reading someone elses file, like they did the whole time I was in the hospital!!! hehehe
Three months later, the "Hospital Stay Saga" continues.....
Love Ya Guys!!!
The nurse at my PCP said that my symptoms are being caused by my torn rotator cuff. I didn't realize that the shoulder would cause numbness on my scalp, tongue & the COMPLETE other side of my body or make my numbness go all the way to my toes. I also did not know that the shoulder tear would cause me to have twitching all over my body & my eye to start going side to side. Very interesting those shoulder tears! :)
The most interesting quotes I got was from my first neuro. He really gave me a few bad ones that I had to laugh at.
When telling him about the tremor I occasionally get in my hand when reaching for things he turned and asked, "Have you tried sitting on it?" Can anyone tell me how that would help?
When telling him about the seizure like episode my hubby witnessed (I did this during sleep, I loss control of my urine, and I don't remember the episode) he said (as to not remembering the episode) "I must be a heavy sleeper"...and to the jerking and the urinating, "Maybe that's something you do in your sleep." As to this quote....if this was normal for me, I don't think it would have alarmed my hubby so bad, especially since we've been together for 12 years. I think he knows my sleep habits by now.
I had an experience that has happened twice in the last 4 years. I was having a ECG (I think htat is what it is called - where they paste wires all over your head). Anyway, during the test where they flash the lights in front of your eyes, I got the epilespy jerks pretty badly and just started bawling for no reason at all. Both times, the lady who was doing the tests, was very concerned about me and was totally dumbfounded at the results as nothing showed up on the tests, even though she witnessed the jerks. She told the neuro what happened and his comment was:- mmm, strange. And that was it !!!
Never offered to follow up what could have caused this or anything. Decided that even though my tests didn't prove that I ahd epilespy, I had the symptoms so decided that medication for epilespy should do the trick.
"Half of you has conversion disorder." That's probably my favorite, courtesy of neuro 2, followed by...
"Well, I guess it could be that the slight L5 protrusion to the left that is not impinging on anything is somehow causing all those problems on the right." From a neurosurgeon who obviously really really should have known better.
"You have restless leg syndrome. Here is a four-page, badly Xeroxed handout about RLS, see ya later. What? The Lhermittes? No idea why you're having that." From Neuro 3, a Parkinsons specialist who was DYING to give me some dopa drugs. Gee. Wonder why?
And from a long time ago..."Let's see. You're 5'5", and charts say you should weigh 100 pounds at 5 feet and five pounds for every inch over that, so you should weigh 125 pounds. You should try to lose about 15 pounds." She was using ancient actuarial charts. I was wearing a size 8 at the time (and still am). Think I was probably OK weight wise...and still am, with a perfectly good BMI. And that woman actually told me to LOSE 15 pounds. Not because of ME, but because of the CHARTS.
There're good docs and there are bad docs. Unfortunately, they don't wear signs.
I hope this was supposed to cheer us up. I laughed so hard I had tears in my eyes. Lets see, urinating at night is normal, jerking is normal, we're all depressed. We're all going to be bedridden.Oh My G od! They really are going to come and take us away ha ha. The men in the white coats, to the funny farm Ha Ha.
The sad part is that it really isn't funny. I', sure there were many tears shed over these comments by insensitive, uncaring, just plane dumb doctors. I just wish that I was Jennie, could wiggle my nose, and make you all well. Since I can't, I send all the hugs and prayers that my body can hold to you all.
PS I'll say it since no-one else did "It's all in your head"
Just got this yesterday getting test reports, more puzzling than funny...
"Well on paper you're doing good" huh????
"I know the radiologist says you may have a demylinating disease, but when "I" (pronounce it eyyyyye) look at the films, I'm just not impressed".
"Let's see you walk" (timy exam room, I slide off table, take three steps, turn around, 3 steps back) his opinion: "looks fine".
"Let's check your reflexes" (runs a metal instrument from my heel to the ball of my foot, toes spaz out) his opinion: "looks fine"
Wish I could see his stock portfolio, I'd tell him it looks fine :)