First post - Questions on Misdiagnosis

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First post - Questions on Misdiagnosis

Postby feesher » Fri Jun 25, 2004 9:54 am

First post!

My wife was dx'ed as RRMS in 1999. She had optic neuritis, hand/fett tingling, etc... MRI's and spinal led to the MS dx.

She was on betaseron for maybe 6 months, and then we started trying for kids. Since then, we've had 2 boys, she felt great while pregnant, and took no meds. She went on Avonex about 2 months ago.

She has stayed largely in remission. I say that because there's been nothing new and major. Just small ebbs and flows of the tingling and eye. All in all, we cannot complain (although the avonex is a BITCH!)

I have been reading over the last few month, sites like this, trying to understnad what I can about the research and altering viewpoints.

However, I look back at her original dx. Within a shot span, she was dx with MS, the world was turned upside down, we got married, and had kids. So we never really took a step back and thought about the dx.

I know it's improbable that she was misgiagnosed, but I am taking this angle because a) the meds are so scarry and b) even if the chance is 1 in a million, I'd like to look into it.

So I ask...
Are there diseases that are misdiagnosed as MS but are really something else? And onthe flip-side, any that are diagnosed as something else but are really MS?

I suspect that many MS can become a neurological grab-bag for "other". Just wondering.

thx in advance - feesh
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Postby OddDuck » Fri Jun 25, 2004 12:41 pm

Hi, feesher.

That's great to hear that your wife is doing so well!

Actually, to my knowledge and experience, since a definite diagnosis of MS is so difficult to obtain in the first place (MS is hard to find and doctors do NOT diagnose someone with MS quickly at all), and your wife was put on injectables, I'd have to suspect she was diagnosed with definite MS, which takes quite a bit of unrefutable evidence before that diagnosis will be given in the first place.

Yes, there are many diseases that may mimic MS and vice versa, but an MS diagnosis is only given out when all other possibles have been tested for and ruled out, and even then there's an extreme hesitancy from the medical field to diagnose a person with MS. Especially since there is no one conclusive test that tells the doctors that yes, you have definite MS. There are different levels of MS diagnosis, also. They might start out saying "possible MS", then they might go up one more step and say "probable MS", and the very LAST diagnosis they hand out is "definite MS". That isn't diagnosed easily or lightly at all.

Is it "possible" that someone could be misdiagnosed with MS and immediately placed on injectables? Yes, but very highly unlikely. Some people struggle for many years trying to get a definite diagnosis even when MS is "suspected".

It is a well known observation that during pregnancy, MS remits, and only tends to return after the pregnancy has ended. The supposition is because a woman's hormones change drastically (to avoid the body's automatic rejection of foreign matter) in order to avoid miscarriage.

Levels of certain substances (that make up the immune system) change during pregnancy, which provides protection for the fetus, and in doing so, also provides some relief and remission of MS. After pregnancy, a woman's hormones and immune system return back to the levels they were at before pregnancy. Hence the reappearance (most often) of MS symptoms.

So......how often is MS diagnosed when it's really something else? Almost nil. MS can be misdiagnosed to be something else, though, (when it's really MS and they didn't find it or diagnose it correctly).

Frankly, I would personally advise you to continue to research as much as you can about MS itself and how she can help herself with the proper medication (as she apparently is currently), diet, exercise, etc. etc. I truly believe it would be a waste of valuable time and effort to try to pursue the misdiagnosis angle.

I hope I haven't been too blunt. But, remember, don't freak over MS. It has become more manageable in recent years, and hopefully will continue rapidly to be even more effectively treatable in the near future than it is now. The future looks bright!!!

I've had MS since practically birth, and I'm still doing real well. I had three children, and currently have 4 grandchildren with another on the way. You'd never know that I've had MS for 49 years! So, keep your chin up. MS is not necessarily always a "sentence". Try to remember that as often as you can.

Nice to meet you. And you sound like a wonderful family!!

Best to you all,

Deb
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Postby Felly » Sat Jun 26, 2004 6:40 am

I agree with Deb, it is most unlikely that the diagnosis was wrong if both MRIs and spinal tap done. Yes, occasionally mistakes happen but MS should not be a diagnosis that is given lightly and they must be pretty certain if they decide to medicate so quickly.

For example, it took a long time for my diagnosis even though I had positive MRIs because my evoked potentials are fine as was the physical examination (L'hermittes the only sign), so unusually in the UK under the new Macdonald criteria, they decided to do a spinal tap as well. This along with various blood tests for Bechets and lyme, lupus and cat scans for neurosarcoidosis. Just a few of the disease that can mimic MS in some regards such as white matter lesion pattern etc.

I think when you feel really good as many of us do with RRMS it is really hard to imagine that you have anything wrong with you. It is easy to forget the relapses, especially if they are mild.

With an initial diagnosis of ON and only sensory symptoms your wife could be extremely lucky. I had a form of ON at 23 and never had another attack for about 14 years, ever since then they have been mild and, on the whole, sensory with no residual disability.

So she may be lucky. Who knows. I tend to live in the present - there is nothing I can do about the MS (although I am having a good try), but there is something I can about how I choose to perceive it and deal with it.

None of us are mindreaders, I could be in a wheelchair tomorrow or may sail through life with no further relapses. If I dwelt on it then I would go mad. Control is one thing - a very important thing, but obsession brings its own set of problems.

Read as much as you can, take what you can that may possibly help the MS and live as much as possible one day at a time finding time to laugh and enjoy your life. And with that I'm off for a walk in the woods.

Goodluck,
Felly
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Postby CCmom » Mon Jul 19, 2004 11:18 am

I would definitely make sure Lyme Disease was ruled out. It is commonly misdiagnosed as MS, and testing is very vague, since the older tests are only accurate during a certain "time window".

For your interest, you might go to

www.allergyresearchgroup.com

and select the newsletter option in the top left hand corner. Scroll down to the January 2004 newsletter. It is quite enlightening regarding Lyme and misdiagnosis.

My son was diagnosed probable MS based on lesion appearance only, so I do believe the diagnosis can be handed out a bit more casually at times than it should. However, you just never know. A doctor worth his/her weight would be sure to check for Lyme and rule it out before diagnosing MS, but there are so many false negatives with the old testing that it's not something you can "take to the bank".

I will never stop researching and asking for tests as far as my son goes. If his diagnosis were more concrete, I might react differently. I might be able to resign myself to it. If the diagnosis were mine, I might be able to resign myself to it, but it is so very vague, and it is my son involved, so I can't give up questioning and learning all there is to know. I understand your concern.

Good luck!

Kim
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be glad

Postby Outlawbiker » Sun Nov 14, 2004 1:06 pm

Avonex is just once a week. It can be so much worse. I hate needles sooooo much. But like I said. It CAN be worse. Take care of her and your babies. Love the bejeebers outta her and DO EVERYTHING YOU CAN TOGETHER while you still can. We're blessed with borrowed time.

This past September I rode cross country alone on my Harley to attend my 20th H.S. reunion. It was the most wonderful adventure I've ever had!! God willing I'll have a part two to add to this next summer. Damn!, Writing this just brought tears to my eyes. This disease sucks dude, God bless y'all and stay strong.

Gil :cry:
Dx RRMS 10/2000

Avonex-2000-2002
Rebif- 2002-present
Provigil- 2001-present
Baclofen- 2000-present
Lipitor(statin)-2002-present
Celexa
relapses since 2000------ZERO!!!!!
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Postby Mollysmom » Thu Nov 18, 2004 10:10 pm

I don't know if the Original Poster is still reading these since he posted back in July, but I wanted to chime in.

Your wife's story seems very similar to mine. I was dx in 2002 after just one exacerbation (numbness and tingling in feet and legs up to the knees with L'Hermitte's sign) and supporting MRI and spinal tap. I, too, was given a definite dx and put right on medication. I chose Rebif, which had just been approved.

A year and a half later, I got pregnant and went off the meds, felt GREAT in the pregnancy, had a baby girl in April of 04, and felt great right after the birth. I was having A LOT of second thoughts about the diagnosis. I told my husband I thought I'd been misdiagnosed and I was convinced that the MRI my neuro had set up for me 6 weeks postpartum would show no change from the one 2 years before.

Unfortunately for me, it did show change. 2 new lesions. And my neuro. exam in August revealed a bit more sensory loss in my feet than at my last exam. So, back on the meds I went - Betaseron this time because I couldn't handle the sting of the Rebif. I've been really fatigued lately - the meds plus the baby plus MS is tough - but I still haven't had a relapse. I DO believe I've got MS now, and 2 different neuros. agree.

I'd urge your wife to have an MRI if she hasn't had one since her dx. It is helpful to see if there is any new activity. I know how tempting it is to think that it's not really there, especially when you're taking a drug you hate and you feel pretty darn good. But a new MRI could help to convince you, or convince the doctors to take another look at her case.

Hope this helps!

Mollysmom
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