fibromylgia & MS

[meg321]

So many people who thought they had MS end up being diagnosed with fibromylgia, what is the difference and how can they find out???   Just confused that it may not be ms.,

meg

[Maks322]

Hi,
I got around the rule by saying I was being evaluated by one doctor for myasthenia gravis and not for MS.  I did make sure the first doctor was on board with me seeing another specialist in the practice.  They did call me the Saturday (of all days) to tell me I couldn't see the second person, but I fought it and won.  It's a stupid rule, especially since its a huge hospital.
Good luck,
Maureen

[jmp77]

I was diagnosed with fibroin 1990. Then several months to years later, had an episode with extreme weakness, heaviness, pain with left arm and leg, accompanied by left eye ptosis and some facial slack on left side.

MRI was done. Told I had MS by first neurologist. But, I didnt want to do the spinal tap, so waited for the next shoe to fall.

Husband had to have a neuro eval, and I liked this neuro so made an appointment for me. She said, no to MS for me, just fibro. I went on my merry way.

Now, 17+ years later, vertigo lasting a month led to a CT that was not normal, led to a third neurologist...neither of the first two still practice here; third neuro now says never fibro, always was MS. Wants me on meds yesterday. Ask for another opinion, since I've been on this road before (by the way, for the last 10 years have had little to any fibro symptoms except on occasion and generally with weather changes or over-exertion, or stress...

Now almost 2 years since 3rd neuro said MS, am still waiting to get a second opinion. The problem? there is a local neuro who specializes in MS...I CANNOT see him because neuro #3 is in the same practice and I am an established patient and they "do not switch patients between drs" Argh!

[Deb61]

I was misdiagnosed with fibromyalgia, first--according to my neuro I don't have fibromyalgia.  On my road to a diagnosis, I was seeing rheumatologists and not thinking my problems were neurological.  I had a lot of weird and painful symptoms that I thought were due to lupus or something like that.  My ANA titers were never high enough for a lupus diagnosis.  

When I had my exam with the rheumy (when I got the fibro diagnosis), the rheumy stretched the criteria for the pain/trigger points.  I only had a couple of them, because he poked his fingers straight into my ribs-- which would be painful for anyone.  I never came close to more the trigger point criteria--but got the diagnosis anyway because I had pain and very serious symptoms.  Plus, it wasn't looking like any of the rheumatological diseases that he knew about (because it wasn't--duh!!!!).  

When I finally saw my neuro, he told me that that diagnosis was bogus--that I had a demyelinating disease (diagnosed with MS six months later) based upon my MRI results.  

My doctor says fibromyalgia is is not a disease--it's a collection of symptoms or a syndrome.  He thinks people or slapped with this label when the doctor gives up (or as he put it--lazy) on trying to figure out what is wrong.  I have no idea about this (pretty confused)--I know many disagree, but this is what my neuro told me.  

So, through my somewhat muddled thinking (but first hand experience) I think that it is much more likely to be misdiagnosed with fibromyalgia.  

Deb

[meg321]

Thanks, that does help...although i asked the question because  some did say that to me, but after you posted i got confused which i do a lot. I am realy tired of being confused...but i did have  MRI's that showed MS.    

meg

[essdipity]

This is quite interesting. I hadn't heard that many people are misdiagnosed with MS when they really have fibro.

I've heard it often is the other way around, though. This can happen when a person has symptoms of pain but MRIs don't support an MS diagnosis, at least not to begin with. As the disease progresses, this changes, and the more distinctive kind of MS symptoms and disability become apparent.

ess

[watson01]

Hi Meg321!

I am unaware that people with fibromyalgia often get misdiagnosed with MS.  But, I guess the confusion or misdiagnosis may stem from the fact that, for both MS and fibromyalgia there is no one specific test to diagnosis someone with either disease.  Additionally, both MS and fibromyalgia have a high degree of pain associated with them but the type of pain is different.  Usually, fibromyalgia patients would have widespread whole body pain lasting more then 3 months which is associated with trigger/tender points in the body.  There are 18 designated possible trigger points in the body (although a person with fibromyalgia may feel pain in other areas as well).  The only way doctors diagnosis fibomyalgia, is to perform a trigger point test where force is exerted at each of the 18 trigger points; the patient must feel pain at 11 or more of these points for fibromyalgia to be considered.  So, these patients may feel muscle soreness, achy type muscle pain that is widespread sort of like how you feel when you get the flu.  This type of widespread pain could also be associated with rheumatic conditions such as arthritis or osteoporosis so these diseased need to be ruled out before a diagnosis of fibromylgia can be made.  Usually, MS patients do not have this type of widespread muscular pain that is typically seen in fibromylgia but my have pain in specific regions of the body.  I hope this helps!