Mine was when going to see the neuro for a 'renewal' of my temp. capper's tag, HE CHECKED OFF on the PERMANENT block! That day I do believe I went home in one total, complete FOG. IT WAS REAL, IT WAS PERMANENT?
While I appreciate the access, I also pretend to ignore the handicap by parking and walking farther than needed. Forcing myself to move more and ignore the total disability prospect.
The permanent aspect 'hangs' over me tho. It's like a metastic cancer in some ways -more mentally than actual physical?
Yes, I guess it goes with the 'YOU DON'T LOOK SICK' aspects of what we all deal with..

OK FOLKS...WHAT was your worst day?

ps...I've others, but they aren't near as exciting? - j

I too have several but the one that sticks out is when I had my bypass surgery and the doc said that my blood gases were extremely low and that I might have to be on oxygen for the rest of my life. I don't cry often, but I did in the hospital, alone and with this dx. It finally got better and I have no trouble with the breathing at all but it was a life ender for me at that time. Tommyd

Back in 1971, I was young, and working long hours, and was feeling sick.
So we had just moved here, and my husband suggested I go to his family doctor. This guy took blood and then told me I had a serious blood disease!
and gave me a dangerous antibiotic...called chloromycetin...which was taken off the market here (it was removed 6mos later--which I had read was coming) for causing aplastic anemia--- a serious blood disease!
Needless to say, I didn't go back to HIM. quack quack...

But my most awful experience was when I was going into surgery for an
emergency C-section, to have my son. The doctor told me I had a 50/50 chance of dying or having a stroke or becoming a vegetable! That was really great for my blood pressure, which was thru the roof necessitating the surgery.

And as you can see I am still here, and don't have a serious blood disease either!

So much for bedside manner. Mine was in 1999 and I was refered to UCLA dept of neurology. I had seen a couple of doctors there and was bumped up to another specialist in the group. I had driven there from work and I was assuming it would be another uneventful appointment. This particular doc walked into my little room and told me that he had not looked at my file yet but based on a discussion with another doc, I had ALS. He told me that I should put my affairs in order, apply for SSDI and that the life expectancy is two years from date of diagnosis. Needless to say my husband went on all future visits. I don't have ALS and what's odd is that he never noted his diagnosis in my chart. I saw him two more times and moved on. Some docs just shouldn't be docs.

Susan

This is one reason I don't watch House very often. I saw it last week, and will watch tonight, but I typically don't. Each episode revolves around "not being able to find a diagnosis" and in the meantime, the patient goes thru agony, as each failing treatment causes pain and suffering beyond the original illness.
In one episode one poor young man had a hand amputated as a result! I guess we are supposed to think in the end, that the miraculous cure was finally found.
Somehow I miss that message.

People love that show, but I don't think they get the subliminal message, at all.

I've had too many mis'diagnsis...but worst of the worst was going to ER one morning for loss of balance, dizzyness, rapid heart beat, cold feet and hands.
ER doc refused to order blood work, that I was having inner ear viris AND full blown panic attack!...
I argued, begged for labs, said something "IS WRONG"!
My insurance is very good...wouldn't have been a problem.
She was furious with me, who was I to argue!...She a doctor, me a Phlebotomist (fancy name for blood sucker!)
She TOLD me I was self diagnosing...no shift sherlock! Someones got to be smart around here! I KNEW something was wrong with me and I told her so.
Was 2nd time in ER in 25 years....not hypochondriac behavior!
2 weeks later, I fainted while driving.
Different good doctor now, found I was severely anemic...5.1 hgb...
so was NOT a panic attack OR inner ear viris!
I was bleeding to death! Idiot ER "doctor"!

Took them nearly 3 years to find the cause...was an intestinal AVM (anuerism like mass size baseball)
Was first told may have Luekemia...
bone marrow studies and other blood test proved was not...but took long time of just having blood transfusions every other week!...nightmare!
I've also had diagnosis Polymyositis...muscle weakness, twitching, fatigue, but not confirmed with muscle biopsys.
Rheumy begged Neuros to perform.
Was passed around, never got this done...finally did get an EMG and NC test. Had moderate level of Perihperal Neuropathy.
I asked if was vit or min deficency...years of gastro d'reah, bowel resections, Crohns disease and 3 years of severe anemia...was it a deficnecy? Told NO!

I continued my downhill decline in "health"...so fatigued, couldn't even brush my own teeth or hair!
Years of suffering...6 month totally bedridden....found BT...Rose urged me to take Methyl B12...few weeks later, complete turn around in my fatigue, now normal EMG and NC test.
More stupid doctors...mis diagnosed, failed to give me even basic and standard protocol...anyone with Crohns disease, let alone a bowel resection gets B12!...I had 2 of them!...was NEVER given such....OMG!

What are some of these doctors doing in med school? Watching cartoons?
They need to watch Mystery Diagnosis...my story (well could have been) was on the other day "Bizzare Visions"...this one womans 12 year saga, finally diagnosed....B12 defiiency!
My muscle weakness and twitching began after reiceiving the drug Remicade.
But who knows...if my body reacted to THAT...or it stripped the B12 from my body?
My muscle weakness and fatigue gets a little better with steroids...so that says I may have Polymyositis afterall...only God knows!
But Methyl B12 has been a godsend to me!
Perhaps if I'd gotten that in the first place...I would never have suffered from all the muscle problems and Neuropathy.
I was very lucky my AVM was JUST in my intestines and not in the head where most of them grow...you're born with them! Lukcy me~
Blessings, cheryl....cry tears!

My worst was recent. My younger brother called and confirmed that he had a leukodystrophy, probably the same as I and two other siblings. So that makes over a dozen nieces and nephews that have a 50/50 chance of inheriting the same thing. When I found out, I was sick enough that I did not much care what I had, I didn't think living was worth that much at the time, I guess.

Wow Michael178...what a horrible blow this is.
I must put things in perspective when I feel sorry for self.
From what I've read or know about this...is bad as ALS, perhaps worse?
I am soooo sorry...my heart goes out to you and your family.
Life on planet earth just isn't fair is it?
May God comfort you during this horrible trial.
Cheryl

First off, let me start by saying that I am so very very sorry for everything that everyone has had to suffer from and through to get a diagnosis. We were really lucky that my ACM was diagnosed as early as it was after symptoms began to become troublesome.

Secondly, let me state for the record, that I absolutely ADORE my neurologist. He's competent, has a great bedside manner, listens, and above all else, he's extremely easy to talk to in general. However, he has an unusual quirky sense of humor with patients who have "anxiety issues". Least, I have anxiety issues personally, and his sense of humor and joking always served to relieve me of some of the stress during appointments and consultations.

Ok, the story.... I was on my way to the "decision day" appt. with my neuro. To consult about the results of a blood test, an NCV, an EMG and a Head and Cervical MRI. Hubby and I were joking on the 45 minute drive (we find relief in humor, its strange, but it works) about how they were probably gonna wind up finding some hereto unknown disorder, that they would end up naming after me and there would be text cases and what not.

We get to the appointment, and the neuro comes in the exam room, sits down and opens my file. "Well" he says, "I have some good news, and I've got some bad news."

Hubby and I just kinda prepared ourselves. We'd been through possible dx's of possible MS, possible Parkensons, possible Carpal Tunnel, possible Lou Gherigs, possible Alzheimers, possible arthritis, etc. However, what we got was totally unexpected.

Neuro continues after a dramatic pause.... "The good news is that the test results came up negative for Parkensons. However, the bad news is that your brain is..... FALLING OUT!"

Ok, at this point I'm in shock, about 30 seconds later, hubby literally falls out of his chair laughing almost to the point of hysteria. I have mental flashes of cartoon characters getting hit with an anvil or mallet or something, and their brain just pops out on the ground in front of them, and admittedly, I began laughing myself. It was just too rediculous to even fathom, ya know? 30 year old women, who have never been hospitalized for anything other than a normal delivery (havent even had a single broken bone, still had my tonsils, gall bladder, appendix, everything), they just dont have their brains FALLING OUT!!!!

After a few minutes of hesterics on our part, we realize that the neuro is just sitting there calm as a cucumber, with this entirely too serious look on his face. Course, knowing his bedside manner, this is a wake up call.... definately NOT a joking matter. He plops up some of the MRI films, and circles the parts of the cerebral tonsils hanging, then draws an oval showing the normal posistioning. Hubby and I realize, as perposterous as it sounded, the films didnt lie, and parts of my brain were definately "fallen and couldnt get up".

So that's my little ditty. I hope God blesses each and everyone of you all.

Dawn

We should document these odd behaviours of our docs...for the good or not. So that others can learn and understand that they are not ALONE. The whole sets of testing processes sort of 'set one apart' and then...we find out we are well, 'distinct' in ways never imagined.

Sad that we have to 'go through' all this, sadder still that we have to search and find competency to actually treat us, before it's too late. I got lucky, and so far [knock wood] am staying lucky. But others here are not so lucky.
Please all here who check in, post your own worst experiences? We all really need to keep in touch with all others both here and out in the world. I just WISH it didn't have to be the way it is....the 'systems' that is/are?....
Hugs and hope to all! 's - j