how many have been thought to be misdiagnosed?
 

I just came off a looong hospital stay, and one of the first things they jumped to was

1. its an MS thing
2. Maybe you dont have MS. maybe you have another disease.

They went to great lengths to disprove Porphyria. They were quite convinced that I had been given a dx of MS when I didnt need it.

Not long ago, I had weird other sx and the rhumy told me she believed me to be mis-diagnosed. She thought me to have Sjoghrens and not MS.

Not long before that I was told by another specialist that they thought me to have lupus or lyme, not MS

I guess I dont fit perfectly into the MS catagory. Who does?

How many of you have been approached by other specialists with the suspicion of a mis-diagnosis? I have found it kinda common in my world for others to latch on to disprove my MS diagnoisis.

They fail each and every time, and they keep coming up with the same conclusion. "oh, you have MS, and...all of these weird flare up things, well...its an MS thing." They put me through worry, tests, and concerns, only to dump it all back on an MS thing.

Im so tired of this. When will they just allow me to have MS? Even my friends keep saying "maybe you have celiac? or maybe you have this or that!" Sheesh! When is it ok, to just have MS? Why is it so important to everyone that I keep looking for other things it may be?

Does anyone else have this happen in their world?

I remember the first time I went to Barnes Hospital MS center and first had a physical exam by a ms fellow. After the physical, he said maybe you don't have MS. Then he and his supervisor looked over my MRI's and LP results and said -- You definitely have MS. It must be common because just about every time I see my neuro he states, "you do have MS." NO kidding?!:eek::D

My First Neuro, in 1975, who became a renown Neuro/surgeon, hesitated in giving me a deffinate DX of MS. He said that all the tests showed that I have a demylinating disease and that it is, most likely MS, but he hated to give that DX, because people and Health Ins cos, would run scared.:eek:

At that time he thought it was mild and that I could go into a long remission....which I did (17yrs). So, of course I went into deniel until 1992, when MS raised it's ugly head again and confirmed, that I did indeed, have MS, confirmed by my 1st Neuro's, then, Partner and now, in 1992, she, was the head of Neurology of a big hospital....(small world)

So, Dej, it just goes to prove that , even the finest Docs don't like to jump on MS, until absolutely sure and I was a classbook case of MS..:D

:hug::hug:

Dejobo,

Is it possible that you may be one of the patients who have taken one of the ABCR's and yet you really don't have MS?

Several months ago there was a post on another MS site which described how some people on these drugs became severely ill with some deaths reported when they were given these drugs after they had been misdiagnosed with MS.

I believe the fact that no real test is available to diagnose MS makes it a certainty that misdiagnosis occurs all the time.

gmi

[quote=Dejibo;650935]
They were quite convinced that I had been given a dx of MS when I didnt need it. [quote]

Who does?:winky:
It just convinces me that the "experts" don't understand MS or its possible mimics any better than I do.
I'm glad you're out of the hospital, though! Hope everything goes much better for you from here on out.

I just spoke to the big city hospital and they say ...

YOU HAVE MS! Get used to it! Its not a mis-diagnosis, its not a mistake, and we took great pains to dx you carefully, and thoughtfully. it wasnt a rush to judgement, nor was it a kindness that we did. We would have left you on limbo isle for years if need be, but...YOU HAVE MS!

I hate this disease. it has so many unknowns.

I was also told that its not too rare for gastro paresis to occur in MS patients. As a matter of fact, they have several in my same clinic and they are well versed at handling them. They made me feel so much better.

Perhaps you should have gone to the big city hospital?:)

Kinda weird that they have to hammer that nail over and over :confused:
I don't get it. I don't think that docs easily dx MS...they seem to bend over backwards to try to blame anything else under the sun.
So why, after all these years of you being dxd with MS, would docs again do this?

Actually, I'm the one who keeps insisting I don't have MS. the doc is quiet and calm when he puts my doubts to rest. But I don't want it:mad:

The little city hospital tried to have me transferred to the big city hospital, but they wouldnt take me. it was reccomended that the next time I run into crisis, that I bypass the small town place, and take the extra 2 hours to drive north to the big city place.

They really did make me feel better to know I wasnt alone or weird in the gastroparesis department.

I just hate that so many folks guess, or second guess others. When is it ok to just have MS? No one needs to save me from it, or rescue me from the dx or correct a mistake. it just is, what it is. When will that be enough?

Ding! I was going to make this my focal point. It SHOULD be ok to just have MS, if they're treating the symptoms and you're finding relief and you're on the DMDs or whatever plan of action you take.

It shouldn't be the patient sitting in 'doctor limbo' of the 'Ha! I was right, you were wrong!!' that goes on between 'medical professionals'... :rolleyes: .. especially in a smaller region. They're cutthroats here!

I'm telling you Dej, it's ok for you to just have MS, and tell your doctors just that, until a symptom comes up that's undeniably something else that can't be left untreated outside of MS (like, kidney stones for example).

I wish they'd spend less time trying to disprove one another (medical field) and more time realizing 'Hey, real people have this crap!'.

Ahhh, but wouldn't that be lovely?

Dej :hug:

haha then there is ME opposite, each other specialist from ENT, Neuro pysch, PT, Opthamologist all over the years have asked if I have been tested for MS.... then due to clear MRIs neuros say nope... but do not have an answer for what it is then.... hugss,sarah

Then I come along and have MS.. plus a few other auto-immune diseases besides the MS. :(

It is not unusual to have more than one, or even something else in addition to MS. MS surely is enough for anyone, but that doesn't mean we can't add up more as time goes by.

In 1977-78 when I first presented with Myoclonic tremors and jerks they thought I had Wilson's disease. I was tested and tested. It is a hereditary disease, but glad I didn't have it. I had to have a Liver Biopsy too, not fun. :(

I have too much Copper, 24 hr collection of urine, and in the blood, and too low Ceruloplasmin in the blood. I didn't have the brown/gold eye circle (ring) that a specialist in the field at the Grand Rounds checked for with a split lamp.

He flew in to give a presentation on Wilson's. That's why so many specialists were there.

Hey, back then they had no clue. Had all the tests and the room of Grand rounds doctors from local, and many countries, discussed me. Had me demonstrate my tremors which were very odd.

Other diseases were mentioned but that one stood out in my mind until this day. I don't have it, yet they said avoid eating too much foods with copper in it.:confused:

Every eye doctor I go to, I have them look in my eyes for that sign. Still good. :) Phew!

Since my DX, I kept hearing how I had some symptoms that were "atypical" of MS - but my leisons are and they ruled other stuff out. Been tested for everything under the sun, even after DX. Then lo and behold, they added Fibro to my mix. Knocked away some of those "unusual" symptoms into that bread basket. :rolleyes: Still have things that make one go "hmmm." but learning to deal with it day by day. :)

I had a hemicolectomy 2 years ago for a bowel tumor and had a paralytic ileus afterwards, for more than 2 weeks.

Since then I've moved states and when my new GP (family medicine practitioner/internist) got the post-op information from my surgeon, he (the surgeon) had put the bowel obstruction entirely down to MS, and not as a post operative complication, per se.

That was news to me.

I was seeing a neuro in Miami (for siezures) who said he didn't think I had MS. This was about 6 years after I was dx'ed in Toledo. I didn't tell the guy about the other neuro I was seeing at the time (MS specialist).

I tried to see a neuro a couple years ago here in Houston to get some help with the neuropathy pain I'm experiencing. I went to 2 of them. Neither one would believe I had MS. Neither one of them would look at my MRI films or the radiologist reports either. Idiots. I do have an MS dx in Houston from 2003.

Tom

its nice to know I am not alone. I just hate that the first thing they jump to it one of two.

1. its an MS thing, get used to it, or...
2. hmm...maybe you dont have MS, let me test you for...

When is it ok to just have MS? Even my friends were on the bandwagon for a bit. maybe its celiac! or maybe its a vit def, or maybe ...fill in the blank. sheesh!

I guess because MS is so transient, and invisible to most its hard to let me have it.