For those of you w/ both Fibromyalgia and MS

[julia111]

I am curious to hear the stories of those of your who may have first had a diagnoses of FM and then how MS presented itself in addition to FM.  

I was diagnosed w/ Fibromyalgia 12 years ago and despite the onset of a whole list of new symptoms (numbness, weakness, buzzing, pins & needles, face pain, muscle cramps, twitches, slurred speech, memory problems, dropping things  .  .  . ) ,  I recently received a "re-diagnosis" of FM.  MS was not ruled out - but "could not be diagnosed at this time" and I am to "go back for further testing should my symptoms become more objective."

I am not "seeking" a diagnosis of MS, but I also don't want to lump all of my symptoms and health issues under FM - only to find out they should be treated separately.

So, I am curious to hear your timelines, or if you have them posted already just let me know and I can go find it.

Thanks, Julia

[Amyloo]

God bless you Julia.  Keep pressing on.  Amy

[julia111]

Thanks so much guys!

Amy -  -  -  its amazing how similar the progression of my timeline is to yours.  The increase in pain that became unbearable, the "numb feeling" eyeball and blurred vision were some of the earliest of the new symptoms I experienced.  I can remember trying to clip my daughter's fingers nails one morning before school and I just could not focus enough to do it, much less control the tiny clippers, I was afraid I would cut her.  The feet and the legs buzzing and my "girly part" going numb - and I could go on .  .  . I have had one MRI of my Brain (without MS Protocol) on Open MRI Without Contrast - - result was normal.  I've had a blood work up done at Mayo - ruled out Lupus, Celiac Disease.  I have not seen a MS Neuro.  But, I am so glad to hear that you finally found a good one and are on track now.    I hope you aren't suffering too much these days and that things are heading in a positive direction given a proper diagnoses.  

Humming4U - - - yes, I agree the problem is, is it the FM really kicking in or MS lurking.  I'm sorry the journey to discovery has been so rough for you but glad to hear you are strong and determined. I feel like I am really at the beginning of that journey and have learned so much on this forum - being informed does help you to be strong !

Deb - - - Wow! You sure have been through so much!  I'm glad you found a neuro you like.  That is so important!  Thanks for sharing your story, its helped a great deal.  I am getting major brain fog right now so I'll have to cut this short.  I will let you all know how things go for me and I wish you all the best.

Thanks again, Julia

[Deb61]

I have been diagnosed with all sorts of things, including fibromyalgia.  My story is murky as to what caused what symptom.  My neuro believes that I never had fibromyalgia, he says I was misdiagnosed and the symptoms I've had were due to MS.  Anyway, I'll give you the briefest version of my timeline as I can.

About 1995-
Lupus-like symptoms, with low positive ANA, skin rash, joint aches, fevers, C-reactive protein, elevated sed. rate, mouth ulcers, hair loss high blood pressure, ringing ears, migraines, muscle pain, brain fog.

Somewhere around 1998-
ANA test never higher than low positive and other tests would never be positive for lupus, which I thought I had.  There was some arthritis in my fingers that didn't look like osteoarthritis, so I was diagnosed with reactive arthritis.  I never had the genetic marker (HLA-B27) or an illness prior to developing my problems.

2000 or 2001
Diagnosed with fibromyalgia.  However, I didn't have but three points of the criteria. I knew after the diagnosis, that there was more to the story, but I took the medicines prescribed which did help with the pain.  This rheumy, undiagnosed me with reactive arthritis.  Also diagnosed with Raynaud's.  

2001
Was in a minor car crash because of some medical issue--my blood pressure was high during that time and my heart beat irregularly.  I couldn't remember how it happened.  I went to the ER and was sent out with a referral for a psychiatrist.

2003
Irregular heart beat seemed worse, blood pressure was higher than ever before, more severe pain, hair loss continued, extremely cold, weight gain.  I mentioned these symptoms to my gynecologist who ran a test for thyroid problems and lo and behold I had something that could be easily be treated and was thrilled!!!  I was diagnosed with moderate-severe hypothyroidism and started Synthroid.  I think during this time period, some tingling and numbness problems started.  I thought this was due to my thyroid disorder (peripheral neuropathy secondary to hypothyroidism).

2003/2004
After starting Synthroid, my world improved (at least for the time being) and I began to feel like a normal person that wasn't in constant pain.  I went off the pain medicines, antidepressants, etc. for fibromyalgia.  When I stopped, I never needed them again.  

2005
Later, started developing swallowing problems, minor tremors, tripping over my feet, falling, vision problems (blurriness, double vision, etc.), numbness and tingling continues, bowel problems/incontinence, bladder problems/incontinence, bladder infections, off the charts fatigue, esophogeal spasms, more pronounced ringing in the ears, severe migraine headaches (every day), embarrasingly bad memory issues and focusing problems, stiff neck, buzzing, zapping, muscle stiffness (which was unlike before), muscle spasms just about everywhere, heat intolerance (I thought it was the sunlight, but now I know differently), and many other things.

2006
Severe migraines sent me to my first neuro, who got these in control.  However, the symptoms above, continued.  First MRI, to rule out brain tumor (open machine without contrast) revealed normal results.  Sister fell as the result of foot drop--later diagnosed with MS.  She insisted that I go to a neuro (besides a headache neuro).  I went, he blew me off, saying that I should have a positive MRI at my age if it was MS.  He didn't want to run another MRI, so I was ready to give up on the MS thing, but my sister insisted that I go to her neuro.

2007
I saw new neuro who order new MRI with contrast on a closed machine.  Had a gazillion blood tests ordered, CAT scan of the chest to rule out TB (had a positive TB test) but revealed negative results.  I also had a echocardiogram which showed a minor problem which backs up the heart fluttering thing that I feel--but so minor that the cardiologist viewed the echo as normal.  First MRI with this neuro revealed lesions (older ones) around corpus collasum and a couple of other places and I was diagnosed with demyelinating disease.  Had an LP completed, but the MS results were probably not sent off to Mayo (so I'll never know, because I don't want to do that again unless I really, really have to).

2007/2008
I've had two distinct relapses since that first MRI and was going through one when the second MRI was ordered.  Four new lesions showed up (and old lesions were bigger) and was diagnosed with relapsing-remitting MS.  Neuro pulled up the MRI that I had that day and diagnosed me.  Started Copaxone a couple of months ago.

If you're aren't asleep yet, I hope that you find an excellent doctor (if it be a rheumatologist, MS Specialist, regular neurologist, internist, etc.) who can put the puzzle pieces together.  

Are you under the care of an MS Specialist/neurologist?  Most people on this forum recommend an MS Specialist (see Health Pages).  I'm seeing a regular neurologist, but love him (he keeps abreast of new treatments and diagnostics for MS).  

I really, really hope that you get good care by someone who will see the whole picture (not like what I had in my journey for a diagnosis).

Deb

[humming4u]

your story is the same a mine to a "tee'. first nero said possiable/proable MS.
2ond said no MS, said just your fibro, which i had for 12 years at that point.Left it at that for now, just treated for symptoms by my GP.sometimes i feel anxious that MS is indeed lurking, but fibro symptoms are kicking  in big time,and that feels like all i can handle for now.i'm very discouraged by the medical professionals that i've had.
i never knew it would be so hard to feel safe and beleivable! I wish you a better journey then i have had so far. You have to be strong and determined and stay that way.
I'm learning this,and trying it on for size now.

[Amyloo]

Hi Julia,

I have been diagnosed with both.  Fibromyalgia was diagnosed about three years ago.  That in itself is debilitating at times as you know.  My biggest issue was pain, but fatigue was a close second.  I also had tingling in my hands and feet, pretty much all the time.    

About a year ago, pain increased substantially.  I started having a "numb feeling" eyeball, and blurry vision.  Eye pain upon movement.  Then my body (mostly feet and legs) started buzzing, like bees were under my skin.  Half of my "girly part" went numb.  (That was charming.)  Bladder started not wanting to empty all the way, urethra spasms,  on and on.  Had MRI's, lesions showed up but were dismissed by two neuros.  (One said they were from migraines which I don't have, the other was chalking them up to fibromyalgia or just "magic".  Yes he really said that.  Even though the radiologists said the lesions were multiplying and pointed toward MS, they both blew me off.

Finally my legs stopped working.  This was last November.  I ended up in a wheelchair for about five weeks.  Saw my third neuro, (an MS specialist by the way) and he got me on the right path with a proper diagnosis.

I know that the symptoms of fibro and MS can be VERY similar, but they are both central nervous system disorders (a lot of evidence is pointing in that direction for fibro) and can possibly overlap.  If you have any new or changing symptoms, get with an MS neuro if possible.  Have you had any MRI's done?  Very important to have the cspine and t spine looked at as well.  (I had two lesions show up in my t spine but my third neuro was the only one to run an MRI on that location.  God bless you, if I can help you with anything else let me know.  Amy