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-   -   Hmmm . . . misdiagnosed? (https://www.neurotalk.org/multiple-sclerosis/69478-hmmm-misdiagnosed.html)

Blessings2You 01-12-2009 06:38 AM

There's something about the nature of MS that makes the undiagnosed wonder if they don't really have MS, and the diagnosed wonder if what if they DON'T have MS but some other "mystery diagnosis" disease that only 1% of doctors have ever heard of.

It's all so confusing. I can't help but think of the people who will hear about this and start another round of second-guessing. And how many friends and relatives will call their MSrs and say, "I just read this and you might not have MS!"

azoyizes 01-12-2009 09:11 AM

Quote:

Originally Posted by weegot5kiz (Post 443514)
have you poked your head in the ON forum http://neurotalk.psychcentral.com/forum105.html

Golly, I didn't know there was an ON forum. Thanks, Frank!

I can see how this could cause anxiety in a lot of people a lot of different ways. Gosh, to be treated for MS for years and years, especially taking one or more of the DMD drugs, and then to be told you actually don't have MS but something else would be awful. Then again, it would be good.

In that case, I think I would doubt everything the doctors had told me from day one!

dmplaura 01-13-2009 12:06 AM

Quote:

Originally Posted by Lady (Post 443555)
Hi Laura,
Where on your head do you feel the head pain? Just curious. I get it on the very top at times, or sometimes in the back of the middle of my head, where the two low skull bones are (and glands under them). It may include the back of my neck (brainstem area) in the mix.

It worsens with a relapse and steroids help after a month. Clonazepam daily helps when it is not too bad.

I always have sinus headaches when they are bothered by infection and twice a year a Migraine that puts me to bed in the dark.

There are so many kinds. Which do you have if I might ask?:)
Lady

:)

My head pain most of the time, extends from the top of my skull on the left side, down to my temple (left side) and under my left eye. It can also involve my top row of teeth on the left. I also get similar pain on the right, just not as frequently and it seems to center around the ear and outwards into the temple/eye area.

The left side is definitely the most problematic. I almost never have pain in my forehead. I had a 'true' headache recently and was almost surprised to feel what a true headache feels like... this is quite different.

My dentist diagnosed Trigeminal Neuralgia and I'm certain I had attacks of the 'classic' type years back. Now what I think I'm dealing with (and my neuro agrees) is Atypical Trigeminal Neuralgia.

I'm affected by this type of head pain almost daily. To differing degrees. Since I quit smoking in September, I've been in pain with the head. But at the end of the day, I quit smoking, so I can suck up the head pains and eventually my body will untangle itself :)

PolarExpress 01-13-2009 12:51 AM

I would be thrilled if some doctor came along and said he was sure I didn't have MS..But then, and this may sound crazy, I'd be more worried about my future than I am now, because if it isn't MS, what could it be? Oh, why can't there be something easy about this freakin' disease?:mad:

Blessings2You 01-13-2009 06:05 AM

That's exactly what I was saying! If a doctor said I didn't really have MS, would I end up with something worse? Or end up in eternal limbo, unable to work, feeling lousy, and saying to my friends and family "Yes, I'm really sick, but no, they don't know what's wrong with me."

I already spent a couple of years lying there at night crying and thinking "What is WRONG with me? Am I nuts?" I'd sure hate to go back to that.

azoyizes 01-13-2009 08:26 AM

Right, when they tell you it's all in your head and that you need to see a psychiatrist, you doubt yourself and the fact that your body is telling you that there is definitely something wrong. It does make you cry, and it does make you think maybe you are a little nuts.

Even after nearly 20 years with a diagnosis, I still find myself wondering at times if this is really what they say it is. But, most of the time, in my heart and in my head (!), I know it's MS.

weegot5kiz 01-13-2009 09:13 AM

I have never doubted myself I have always been a very positive person, until they started telling me to see a shrink, I started to question myself and what if I am nuts ok nuttier,

my darling wife never lost faith in me she knew something was wrong with me, she saw my decline in energy and stability, i even told her i am gonna get Parkinson cause my left arm shook, my vision was going and the test showed little to no need for glasses back in 06 by 07 bi focals:yikes:

the doubt the docs created in me cause they had no answer was wrong, now someone should of, somewhere after 32 ER visits, figured it out why did it take my first ON attack to make them think harder and find it, even my GP knew it was something more but was boggled guess cause I am a guy thats part of it, and was a pretty healthy person in good shape and all, except for the 4 constant SX's i kept having, that was one docs excuse was i am a guy they never suspected it, I for one am pretty sure assuming any thing medically can be a very dangerous way to think and practice medicine

lady_express_44 01-13-2009 02:21 PM

Quote:

Originally Posted by PolarExpress (Post 444483)
I would be thrilled if some doctor came along and said he was sure I didn't have MS..But then, and this may sound crazy, I'd be more worried about my future than I am now, because if it isn't MS, what could it be? Oh, why can't there be something easy about this freakin' disease?:mad:

I agree, Polar.

It sounds like this guy IS determining the cause of the patient's medical issues (stroke, migraines, etc.), although he doesn't say if he has for ALL the patients he undx. :confused:

Frankly, I'd take many dx over MS . . . but not all, for sure.

Cherie

PolarExpress 01-13-2009 10:29 PM

Quote:

Originally Posted by lady_express_44 (Post 444979)
Frankly, I'd take many dx over MS . . . but not all, for sure.

Cherie

Me, too..I call hangnail!:D

Erin524 01-14-2009 02:40 AM

Quote:

Originally Posted by PolarExpress (Post 445294)
Me, too..I call hangnail!:D

I'll claim the toenail fungus! (mostly because I took care of that two weeks ago..and it's finally healing very nicely)


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