My Brother Has Fibro (I guess)

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I went with my older brother to my rheumy last week so he could be

checked out for arthritis. About 20 years ago he was diagnosed with

Rheumatoid Arthritis by the first rheumatologist he saw. He saw

another rheumy a few years later who said he didn't have RA and

diagnosed him with Fibromyalgia.

My father had polymyalgia. My mother has PA. My sister was

recently told she has fibro. Both my brother and sister have

struggled a lot. I have psoriatic spondylitis with accompanying

peripheral disease.

When my rheumy saw my brother last week, he only wanted x-rays of his

hands and feet. My brother complains of pain in his upper back

consistent with fibro, but he has pain in his lower back as well.

Psoriatic spondylitis usually involves just your sacroilliac joints,

but can effect other parts of your spine, especially your upper spine

and neck. I was at the appointment with my brother and asked my

rheumy why he didn't want to take x-rays of my brother's back. The

rheumy responded by saying he didn't want him to glow in the dark from

two many x-rays. My brother was informed by the doctor's office today

that he didn't have arthritis. This was based on his medical history,

x-rays of his hands and feet, doctor's examination and blood work.

When I saw this rheumy the first time five years ago, I was told that

I didn't have arthritis. I keep worrying that maybe my brother does

have arthritis or fibro or both. He's been going through hell with

his pain over the years. I keep going to this rheumy, because he's a

professor at CU Denver and was instrumental in developing Enbrel. I

think he has pretty high credentials. I think, in my case, I didn't

have any joint damage at the first appointment five years ago and I

was just complaining of swelling and stiffness in my hands and feet.

It hadn't progressed much so there was a lack of history.

I know that you don't have to have arthritis in your hands and feet to

have PA. My brother doesn't have psoriasis, although my mother has it

and my father had it. I have severe psoriasis. Is it just me, or do

you think there's a chance that the rheumatolgists are perhaps too

ready to dismiss those things they can't see?

Is there anybody reading this post that struggled with fibro for a

long time, only to be diagnosed with PA at a later date and ended up

suffering unduly? I really worry about my brother and am wondering if

maybe he needs to go to another rheumy and insist on back x-rays. He

thought maybe if he actually ended up with another diagnosis that

there might actually be light for him at the end of the tunnel.

I have a feeling that with the severeness of his pain that my doc felt

that if he had had PA all these many years, that by now, his joints

would probably be telling the story, just with a basic physical

examination...the squeeze tests and the like.

Does anybody have any insights or suggestions for my brother?

Thanks,

Mark

[Editor's Note: I would suggest that your brother get a second opinion from

another rheumatologist. It sounds like this rheumy was basing everything on

what he saw rather than on what he HEARD from your brother. This is perhaps the

most common complaint about physicians - they don't listen to what we say. The

diagnosis of many diseases, including PA, is based on CLINICAL observations

rather than on test results. This rheumy seemed to ignore all the clinical

evidence. In some cases, people have PA long before they show any signs of

psoriasis, so getting a precise diagnosis for us can be problemmatic. I don't

know what your brother has - other than a rheumy that ignored everything his

patient was saying. Your brother has something and he has had it for years. As

you know, the longer he goes without proper treatment, the more the disease will

ravage pieces of his body. If your brother goes to another rheumy, he should

insist on xrays of the parts of his body that hurt. Perhaps his PCP would be

willing to order those. Kathy F.]