I'm talking about any seriously irresponsible comment(s) made by a medical pro/ or tech(during the testing phase or anytime) prior to one's diagnosis.
Here's how I got seriously crapped on, and my neuro went ballistic when I related the incident.
Years ago, when I was having my VER tests prior to my DX,
the tech said that if I had MS, I'd be in a wheelchair in five years, no question.
What I did not know, but the tech should have, was that the course of this disease is quite unpredictable---But when someone's clearly terrified of the results during testing, obviously this is one thing someone in that position should shut the hell up about.
Even 13 years ago as this was, there was not one iota of reason for this idiotic comment, but it crushed my spirit and hopes for weeks. (Had there truly been, I could have dealt with it.. The old"why NOT me" comes into mental play here..) Nonetheless,I swear, I think my symptoms at the time got worse because of how this affected me mentally and emotionally.
As it turned out, I had/have so far, a pretty light case. It had remained so, thankfully, after 13 years (and the last 4 years on Copaxone). So, yeah-- that tech was full of **it,.. but that fact that he may well have been saying stuff like this to others still gripes my soul.I hope my neuro(whom I'm no longer with because I moved) had him fired, or at least seriously approached on the matter.

I've had people wig out when I get up from my chair to stretch, as if they suddenly assume that I'm faking!

I had a huge team of docs in 1981, I was hospitalized for several weeks... every test known to man...

Well, the attack subsided in due course and I recovered only to later discover that my med records were riddled with accusations of phychological issues and malingering. PAH-LEEEEEEZE! I WAS 19 AND READY TO TAKE ON THE WORLD!!!!!

Years later, it still irked me so I went on a letter-writing campaign and demanded a written apology from each one of them, and told them to include a clause that said they simply didn't know. 8 of them did it!!!!!! Some had died, but copies of those 8 letters go to every single new doc I visit now.

I have to say, that has never happened to me, but if it had, I would have reacted just as Cindy did. I wouldn't have taken that kind of condescending treatment from anyone.

As far as that Idiot Tech....what a dweeb..

It can be so demoralizing. Some people just don't get it. Age of the patient doesn't matter, young or old - it's totally unnecessary to make such statements.

My PCP told me during an episode of numbness and neuropathic pain that he doesn't think it's MS. I responded with "I don't a flying fig what it is - just fix it." He also said it wasn't possible to walk into his one day and not the next. That remark still bothers me since I am in limbo. I find myself second-guessing my symptoms, even though I couldn't have crawled out of bed.

When I was hospitalized with the first episode of neuropathic pain, bladder/bowel issues the dx was shingles without a rash and the differential dx was hysteria. I was furious! My BP on admission was 200/110 from the pain.

Everytime I want a referral now I simply phone the MS clinic down south and within the hour (honestly!) they fax a referral to the specialist I wish to see.

Of course the letter is addressed to my PCP with a copy to the MS clinic. I think he is starting to get it - lately I have noticed that he has become a little more respectful since my diagnoses from the specialists are not psychiatric - they are neurological.

Funny how such a callous remark can stay with you for so many years - it's traumatizing. Guess we have all had to deal with it at some point. It shouldn't have to be that way.

MsBee,

That VER tech was just plain irresponsible. You are right, everyone has a different course, we are not cookie cutter cases of MS. He/she needed a lesson in compassion and literature about MS. I am glad your neuro took care of the reprimand. That doesn't happen very often!

I am sorry this happened to you. Being DX is scary enough without someone so irresponsible adding misinformation to the mix.

Hello MSBee,
I'm sorry you had such a horrid encounter, but it's everywhere. I am a medical professional myself and have had such ridiculous remarks said to me. I am in the OB-GYN field, and have been for years. My husband and I have been trying (very unsucsessfully) to have our own child. After one of my first miscarriages, I had a resident physician tell me that I "wasn't a nuturing type of woman" and perhaps this was for the best!

If I had been any less of a nuturing type of woman, I simply should have taken the probe sitting on the desk beside me and shoved it up his (well, you know what I mean.... ). I believe that people are often so shook up by seeing young, bright people with a chronic illness, that it effects their brains more than it effects ours. Unfortunately, his won't be the last stupid remark, but you can also learn to speak up for us, and teach others a thing or two about the actual facts and course of MS.

Again, I'm sorry you had to hear this.

All the best,
Chris

Thanks for all your thoughtful responses! Yup-- it was years ago, but I still think of it often enough.Sorry, too, that so many on here have had similar negative experiences with various medical professionals. I suppose all too often we're regarded as just another case number, so what the hell-- they can say whatever occurs to them at the time.Cindy-- Bravo for taking the issue further in your case..this sort of crap can be quite damaging otherwise.Such grossly wrong and unfair assessments can have long lasting implications down the road; esp. if ,for instance,potential employers manage somehow to get hold of what are supposedly confidential records. In my line of work(the film biz) there are quite a few who, while in basically okay mental health, are in psychological therapy(DUH-welcome to Hollywood), but prefer not to claim treatments on their insurance for that reason. I didn't even consider this when I had three weeks of therapy after my mother died in '91..
So far no problems in my case in that regard.. but one can never be complacent.
Chris-- OMG!! That's truly shocking..That resident already had his head up his ****.. no room for the probe there!