how about multiple sclerosis? sounds a lot like FM

[foxgrove]

Well, that stinks...  Demyelinating disease of the CNS...  Wow!!     Yeah, from that, MS would be the most likely variety.  Everything past that is more rare and less likely.  Well... just goes to show that you're a good researcher... neurologically screwed... but a good researcher nonetheless.  Have you been able to track the progress or is it moving too slowly for that?

Keeping you in my prayers, brother. So sad to hear your diagnosis wasn't more positive.

[db]

So sorry to hear that they confirmed lesions.  It does sound like MS but I don't know if there is more to it. 

db 

[Robby]

Sorry to hear that. You'll be in my prayers. 

[denny]

Do u have fibro too?
Or,too hard to tell I guess.
Well that really sucks man!    

I sometimes wonder which disease is causeing which symptoms myself.

[db]

I think if you have have a known condition like MS then they don't consider you in the fibro basket.  Not that you can't have the same symptoms.   

My point is, they only call it fibro after they rule out everything that's known.  It sort of the final diagnosis, I think.    I keep waiting for a diagnosis to come along to explain my problems.   

db

[augoldminer]

My point is, they only call it fibro after they rule out everything that's known.

This depends on how long ago you were DXed.
In the last couple years they have found many with fibro have small fiber neuropathy that was never tested for and is still not tested for by most doctors.
http://www.medscape.com/viewarticle/772864
Give it another couple years and they may find other disorders that mimic fibro that need tested for

[LizardKing]

My point is, they only call it fibro after they rule out everything that's known.

This depends on how long ago you were DXed.
In the last couple years they have found many with fibro have small fiber neuropathy that was never tested for and is still not tested for by most doctors.
http://www.medscape.com/viewarticle/772864
Give it another couple years and they may find other disorders that mimic fibro that need tested for

Ok, I have had big problems sine 1993 including what I now know is severe sleep apnea.
Was told fibro, but frankly they did little work to give me that diagnosis.
I am still at the "highly suspect" stage on the MS.
It seems to me that it went from recurring/remitting MS to secondary progressive MS a few years ago while I was also dealing with serious cancer issues.
I do feel that MS fits better than fibromyalgia, I was never confident that was the correct diagnosis as it changed a lot compared to what others
with fibro describe to me.
Small fiber neuropathy? Maybe, yet I do not think they are brain lesions with that.
What I HAVE learned is that pain and fatigue is a common symptom for many neurological disorders and do suspect that many diag'd with fibro have
something else, though few other conditions like fibro have any sort of cure and lame treatment.
After 23 years it took some odd attacks to clue me into this and luckily one doctor who order a brain MRI to get some data to support my suspicions.
How many here have had a brain MRI?
A brain CT scan won't show lesions.
I suggest anyone who doubts the FM diagnosis they've been given to get educated to the hilt, maybe keep a journal of symptoms,
and be your own best advocate if you really suspect something else.
Some symptoms I have had for decades I thought were nothing and blew them off as being tired and since they went away in a few days or weeks,
couldn't be anything to be concerned about.

[db]

I've had 2 or 3 MRI's and a similar number of CT scans.  I suspect they were concerned about lesions or some other problem like tumors.    

Luckily, they were all negative, I think. 

db

[ronr]

only had one and it showed some white spots but no further info on them.  It was a baseline since it was the first.

[denny]

Ten yrs ago.
That's when they found a series of mini strokes had occured.
Other than a weekness for reconizing faces,I seem to be ok.. I have to ask my wife which dark haired guy/girl is from one seen to the next on TV.
If the person has light hair it helps me reconize them.

[LizardKing]

Ten yrs ago.
That's when they found a series of mini strokes had occured.
Other than a weekness for reconizing faces,I seem to be ok.. I have to ask my wife which dark haired guy/girl is from one seen to the next.
If the person has light hair it helps me reconize them.

Friend had a stroke and lost his sense of balance, they suck.
Radiologist put down vasculitis under "impressions" on MRI, but other blood work that is abnormal
in vasculitis are normal except for one, which I read is high on 50% of MS patients.
So many diseases have similar symptoms and test results....
I fear they are gonna claim "small strokes" yet this started when I was under 30 and highly unlikely to have a stroke.
It's the easy and non-controversial diagnosis at my current age.

I do think one can be REALLY unlucky and get FM and MS, but not likely.
As others have mentioned, a diagnosis of something FM-like rules out FM itself.
Not that I lack pain a lot of the time, it is not ALL the time and that is just one of the small
things that has made me doubt FM.
One can get lesions from many things including migraines headaches.
There are even people WITH MS who have no lesions, though they say they are 5% of MS sufferers.
Reading deeper into the whole issue there is MS damage that can NOT be seen in an MRI and only found by biopsy
and no one wants to biopsy a brain unless forced to do so.
As for SFN, I understood there was a skin biopsy that can confirm it, yet have read stories from other people
who were diag'd with it without a biopsy who doubted the diagnosis.
Anyone had that happen to them?
I do wonder if SFN might be the actual disease a lot of FM people have.
It is a "syndrome" which means they don't know much about it at all, as most of you have found out the hard way.
If you don't do the proper tests you can't diag'd many diseases.

[denny]

I felt the same-isnt enough evidence for fobro-but everyone here convenced me we are just unique. Different as much as are alike.
I think SFN is a possability for me as well but I just don't see enough difference in treatment to persue the matter.

[LizardKing]

I felt the same-isnt enough evidence for fobro-but everyone here convenced me we are just unique. Different as much as are alike.
I think SFN is a possability for me as well but I just don't see enough difference in treatment to persue the matter.

Difference in treatment?
Not much different between "not doing anything" and "no medicine or cure available".
So many diseases that destroy one's quality of life are in those categories.
It MIGHT help with getting disability, other than that not much.
Even all the MS stuff is EXPENSIVE and not all is proven to even do what they claim and most have serious side effects
and little proven gains.

I do really feel FM itself is like a waste basket they throw a lot of misdiagnosed people into and some
other diseases they are currently incapable of proving one has.
Neurological disorders I am learning have a lot of common symptoms.

[LizardKing]

Oh, did I mention I did a sleep study to confirm I don't sleep well at all?
I swear I have not had a normal night's sleep since 1993.
I have an avg. of 34 episodes and hour and it is 78% central sleep apnea.
That's the kind caused by the brain not sending the lungs proper signals during sleep,
not obstructions. Again, consistent with MS-type damage.
Started with a CPAP machine that is bringing that number down, but erratically.
Get a 5 avg, then a 15, then a 4, then a 9...
I see others here use a CPAP machine, is this normal?
Clue me in.

[augoldminer]

The last research i have seen is about 80% of men with fibro have sleep apnea.

For me sleep apnea is also common with neurosarcoidosis