Diagnosis of fibro or ms?

[tiredaz]

Has anyone been diagnosed with fibromyalgia and then later been diagnosed with ms?  I'm curious because many of the symptoms seem to be the same...

[Nancy T]

As far as I know fibromyalgia is not treated with steroids, but I do remember that after a course of prednisone in 1999 (in an unsuccessful attempt to reverse my sudden hearing loss), my longtime achiness was a lot better for a few months.

[jumpinjiminy]

There have been four docs that have questioned me about fibro and wanting to call what's happening fibro. In fact, the neuroimmuno asked me if I had trigger points and did I know what that was? I only have trigger points when I get a bad headache. They are the cause of my bad headaches. When they are gone, the headaches are too, and the headaches come on a day or two after the muscles tense up and get trigger points. Is that fibro? I dont' have pain any other time, unless some spasticity crops up in my legs or left forearm. And I have a very high pain tolerance.

They all wanted to call it fibro (which disqualifies you for long term care insurance, btw), the rheumatologist, neurologist, GP, neuroimmuno . . .  But then there was that episode of sudden arthritis that hit in October that doesn't fit with fibro. Neither did a lot of my neuro symptoms fit with fibro.

So now, the thought from the newest expert is complex migraines and possible thyroid related encephalopathy. He's running more antibody tests. We will see . . .

Does fibro improve on steroid treatments?

I guess it's nicer than telling you your symptoms are psychosomatic. At least my new neuro took that off the table immediately by telling me that irritability, anxiety, panic attacks, depression, chronic fatigue, brain fog, Raynaud's, and family members with bad headaches were all related to migraines.

Costochondritis, he says is related to fibro. Thyroiditis is related to all of it. So how does the arthritis fit in to the picture?

The other thing that couldn't be explained away by fibro was the shooting nerve pains. Not part of fibro or complex migraines.

I think docs hate me. I ask too many questions and do too much research. LOL. He asked me to touch base in three weeks and let him know how it was going and to reschedule in six weeks.

Fibro is a real disease. They just don't have it figure out yet.

[drsdonthelp]

AMEN SISTA!!!!!!  I AGREE 100% !!!!! My newest appt. with the neuro. in Rochester said that same word to me "central sensitazion" and at the time I had no idea what he even said. I am sitting here reading this and giggling at the same time because I couldn't believe that this is what he meant!!

Hugs, Pam

[Nancy T]

Most doctors seem quite willing to tell you that you have fibro even WITHOUT the trigger points. Those criteria were apparently developed for a study at some point, but--unlike with MS--doctors are not concerned to follow diagnostic criteria for fibro, such as trigger points and sleep disturbance. They will throw it at you if it serves their purposes.

They seem so reluctant to diagnose MS, so insistent on sticking to (their interpretation of) the official criteria, so ready to go out of their way to avoid diagnosing it--yet they seem very eager to diagnose fibromyalgia, even when you don't meet any criteria.

I had a GP once who, when I mentioned the longtime achiness in my arms and legs, asked how I sleep (well, I said); then she pushed on the front of my shoulder--does that hurt? no; pushed on the back of the shoulder--does that hurt? no; "Well, I still think you have fibromyalgia." And that was the extent of her exam and questions for diagnosing fibromyalgia.

I saw a rheumatologist once for the achiness, and although he never said the word "fibromyalgia" (I know he didn't want me as a patient) he did mention "central sensitization to pain," which is what fibro is now thought to be. I don't have any trigger points, but he said you do NOT have to have them to have fibro.

In other words, fibro is really now considered a neurological problem--the brain sensing pain signals wrong--and not a rheumatological condition. But do you think neurologists are going to want to take fibro patients off the rheumatologists' hands? Not likely!!

So it seems that fibro patients are going to get discarded by the specialists and just remain under the care of their GPs and pain-management specialists.

I don't know, but perhaps part of the difference in willingness to diagnose is that MS is a DISEASE and fibromyalgia is just a SYNDROME (collection of symptoms). Not to mention the financial and other implications of an MS diagnosis, of course.

Nancy T.

[tiredaz]

Thanks for the info you've given me.  It's been helpful in leading me to do more exploration.  What did we ever do without the internet??

[COBOB]

If I remember correctly, Fibro has 16 trigger points and you have to have a positive pain from a certain number of them to be diagnosed with Fibro.  It is not considered a CNS disease and is typically diagnosed by Rheumetologists.  More than that, and I'd have to ask Dr. Google.

Bob

[drsdonthelp]

I just want you to know that I am not at all any kind of expert on this whatsoever and I probably shouldn't have responded on your post.

Thank God, their are others on this forum that have wayyyyy more knowledge than me!!

Bob is def. one of them!!

[drsdonthelp]

I know I may not know much about ms or fibro. but correct me if I am wrong or out of line.

I think that fibro, is the dx. that docs. give when they don't have all of the proof for what the real dx. is. To me, its so easy for them to pass it off as " oh its fibro." and then send you on your way. I have noticed that soooooo many msers are dx'd with fibro. first until tests or other mimics are excluded.

Like I said, I really have no clue its just observation and research on how quick the fibro. dx. is given.

Love to all :)
Pam
(I escaped the fibro. dx) LOL instead....... my anti -anxiety pills were increased :(

[COBOB]

MS requires two attacks in different neurologic systems, say loss of motion in right leg and then Trigeminal Neuralgia.  That is dissemination in Space.  They also have to be 30 days or more apart.  That is dissemination in Time.  If you exclude the other diseases and have dissemination in Space and Time, you can be diagnosed with MS.  There is no requirement for x number of lesions or a positive spinal tap or a positive VEP to be diagnosed with RRMS.
See the Revised McDonald Protocol.  That being said, most PwMS have some lesions on the barin or cord, may have a positive VEP and may have OC Bands in CSF.

VEP is a Visually Evoked Potential test that measures latency caused by damage to the optic nerves, tracts or chiasm.  It is not specific to which of these areas, but if the waveform is well maintained and there is latency in the signal propagation, it is considered evidence of demyelination of the optic nerve (Optic Neuritis.)

OC Bands are unique Oligoclonal bands of immunoglobulins found in CSF but not in blood that about 90% of PwMS get.  They indicate unique antibody synthesis in the CNS that is not occurring in the rest of the body.

Bob

[tiredaz]

Will you explain more fully terms like "exacerbaations with dissemination in space and time" and "OC Bands."  Also VEP...Thanks.

[COBOB]

Each disease is kind of like a game of "Similar but what is different.: If you have a poitive ANA and an anti-DNA, docs think Lupus.  Fibro has "trigger points" where the other don't.  MS has exacerbations with dissemination in space and time.  MS may have OC Bands.  MS may have a positive VEP with would be unusual in Lupus or Fibro.  That is the hard part...the teasing out the signs and symptoms that make for a differential diagnosis.

There can be a lot of overlap in the autoimmune diseases, but there always seems to be one or two little differentiators that seem to qualify one and disqualify the others.  

Bob

[Ojibajo]

I was wondering the same thing. I was also wondering if it is possible to have Lupus AND MS?