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General Questions and Answers For learning, sharing your experience, and exchanging information about Multiple Sclerosis. Please discuss medications in the Medications forum, and natural supplements in Tara's forum.

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Old 12-10-2011, 04:32 PM
ljhaze ljhaze is offline
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MS vs. FMS; Some help please?

Hi everyone, I really hope this is the right place for this post, I am new to this board. I was diagnosed with Fibromyalgia 11 years ago and have been suffering with it pretty badly all these years. I noticed a few odd things however, 1) my symptoms seemed more severe and/or just 'different' than many other FMS sufferers I compared notes with. But, people vary, etc. 2) I also have a variety of symptoms that are not even FMS symptoms at all, such as tingling, vertigo, tripping, balance issues and many others that have been otherwise unexplained and undiagnosed. I especially suffer from what FMS folks call "Fibro Fog", but my cognitive symptoms again seem far worse than theirs.

Anyway, recently I overheard someone talking and they mentioned that FMS & MS can be misdiagnosed for each other. I had never heard this, but it struck me odd, because many years ago, an Ophthalmologist friend of mine suggested I look at MS when my symptoms first began.

I came home and did some online reading about MS and am rather shocked to see I have just about every symptom of MS on typical symptom lists I am finding. Many of my non-FMS/unrelated/unexplained symptoms are actually MS symptoms and then of course all of the symptoms that are associated with FMS too.

It occurred to me that I don't think MS was ever actually ruled out. I don't remember having an MRI, I sure as heck know I never had a spinal tap... so I'm seriously starting to wonder if I have been misdiagnosed this entire time!?! It would explain so much actually, there have been a lot of gaps in my FMS diagnosis and I've never actually felt sure of the diagnosis at all.

I guess I am here to ask for any input you may have. Do you get this question a lot, have you heard of the two getting misdiagnosed for each other? And then, what next? Go tell my doctor, "Hey, I think I might have MS?" It almost sounds ridiculous to think that it could have been overlooked. Have many people with MS been initially misdiagnosed? Any input would be most appreciated, thanks so much!
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Old 12-10-2011, 07:11 PM
Redwings Redwings is offline
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Hi ljhaze:
If a proper medical workup is done, MS and fibromyalgia shouldn't be mistaken for each other. The diagnostic criteria are different. All kinds of diseases are misdiagnosed, but that isn't what usually happens when proper workups are done.

Many diseases have some of the same symptoms, so any prudent medical practitioner knows that no disease can be diagnosed by symptoms alone. And it cannot be assumed that, just because you have symptoms that are on the list of symptoms for MS, you have MS. There are no symptoms that are unique to MS.

It's possible for fibromyalgia and MS to coexist in the same person (but that can't be determined by symptoms alone). It's possible that you [I]might[/I] have both, and no further workup was done after you got your FMS diagnosis. If your presentation at the time was explained by FMS, there wasn't a lot of rationale for looking for other causes. That's how the possibility of MS might have been overlooked.

The only way to know whether you also have MS is to be specifically worked up for it. That means special attention to your medical history, MRIs, possibly a lumbar puncture and other tests that aren't normally done in a fibromyalgia workup. You can get more information about how MS is diagnosed here: [url]http://www.nationalmssociety.org/about-multiple-sclerosis/what-we-know-about-ms/diagnosing-ms/index.aspx[/url].

As awkward as it might be, if you want to be worked up for MS, you [I]will[/I] have to say to your doctor, "Hey, I think I might have MS" and ask to be worked up for it. How that's done depends somewhat on your medical insurance and how referrals are made, but at some point you should see a neurologist for the final (at least temporarily ) word.
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Old 12-10-2011, 07:54 PM
MSW1963 MSW1963 is online now
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ljhaze, this is a long, convoluted, irrelevant and indirect reply to you post. Something for you to read until someone else with similar experience and better advice comes along.

Before my dx, I had a case manager book appointments with a general neuro & ms neuro at the sime time. New patient appointment w/ms neuro took 3 months, the general neuro just weeks; she booked both just in case.

The general neuro dx MS, sent me home with material for 3 DMD meds w/an appointment in 3weeks to make a decision on meds.

I mentioned that I would be seeing the MS doc. Gen neuro said the ms doc was his professor in med school and they both lecture at the med school currently.

On the appointment day to choose DMD meds, he asked if I would be seeing the MS neuro; it never occurred to me to cancel so I said yes.

The general neuro then says he thinks I had fibro and was reversing the MS dx; he turned around and walked out of the exam room. Within 10mins of exchanging hello's, I was in my car back on my 2.5hr drive home with the ms dx reversed.

I was stunned, couldn't comprehend what had possibly changed that drastically in 3 weeks. I eventually figured out the general neuro did not want the dx questioned by his former professor and current lecture coleague. My MS dx was eventually reinstated later in the year.

I guess my point is the well trained, often brilliant medical minds are subject to human frailties. Ego, money, throw in a lot of -C med students docs and lots can go wrong in a patient's journey through the medical system that may have little to do with the patient and often more to do with the docs we trust with our care. My experience is an example of how inconsequencial-willy-nilly docs are capable of treating us.

If I were in your situation, I'd want MRI studies with contrast, from an MS specialist.

Good luck, I hope your questions about your dx are answered soon.
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Old 12-10-2011, 08:04 PM
gomer gomer is offline
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Location: Mich. RRMS 1/26/2010
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Not quite in the same boat, however for decades, what turned out to be MS sx were simply dismissed as complications of diabetes and not looked into.

The VA went so far as to send me to the shirnks even. They decided I was not nuts or even depressed. They also noted in my record that I was "adamant" something "ESLE" was wrong and whatever it was was not showing up on tests (that they actually did). After a new non-VA eye doc opened the MS can -o- worms & over a quarter century later, the VA ran the tests and Dx'd my RRMS.

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.Gomer
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