Re: a little funny story then a couple questions...

[Guest guest]

Hi ,

In regards to Fibro vs. Neuro:

Last year I had hip pain in both hips so badly I needed a wheelchair. My

Rheumy said it was not my RA and suggested it was neurological. I went to a

neurologist and had MRIs, the nerve test where they shock you (too tired to

remember what it is called), etc. Nothing came up with a real name so I was

diagnosed with nerve pain. Months later I started to present more Fibro

symptoms along with the hip pain and the Rheumy diagnosed me with Fibro.

So, just be aware that Fibro can come on slowly in some people.

> Hi kids...

>

> Well - went to see my FP on Friday and he was in a hurry and

> defintely had " his crabby pants on " ...

>

> He kept looking at this watch... I would ask if he had to be

> somewhere & if he wanted me to come back...

>

> I had my 22 month old very curious daughter with me and he said he

> couldn't think straight with the extra commotion... I replied,

> isn't your daughter going on 1 year next month and told him he

> better get used to it...

>

> He scoffed at me when I told him my neurologist was 99% sure my

> troubles were RA... he actually laughed and " well, I'm 99% sure

> it's Fibromyalgia " ... come to find out from a friend who also sees

> both docs that they weren't getting along... Guess some big golf

> tourney team issue... My FP wasn't invited to play!!! I just love

> being a scapegoat - don't you guys??

>

> Then he told me that all I needed was a good night's rest and I'd

> feel much better... I told him to walk around in my body for a day -

> even after a good's nite sleep - and see if he changes his mind...

>

> I won't be going back to see him... but will definitely request to

> see his wonderful PA, which I should have seen in the first place...

>

> So anyway... regarding blood tests... My neurologist had only

> ordered regular type blood tests along with my RA Factor (which was

> 9.1) Is it true that the RA Factor test can be quite deceiving?

> What tests should be done on initial visit to Rheumy? What

> questions should be asked?

>

> So my good friend, Dr. FP, said to take 800 mg of Ibuprophen every 8

> hours, which I had been doing... He also suggested 1000 mg of Fish

> Oil capsules twice/day and 1 Tbsp Flaxseed Oil w/ food once a

> day... Any feedback or where to buy cheaply would be greatly

> appreciated!!!

>

> Thanks much for your comments & ideas!!!

>

[Guest guest]

The RA factor is negative in about a fourth of the people actually diagnosed with RA and I think a lot of people with a negative RA factor actually have RA but are not diagnosed. My guess is that about half of the people who really have RA do not show a RA factor. Also about a third of the people who test positive with the RA factor do not really have RA. I think at best it is an indication of RA. The American College of Rheumatology has seven criteria for diagnosing RA and only one is a blood test. Any four qualify for a positive diagnosis so it is much more important for the rheumatologist to listen to patient history and examine joints than to do blood work. However blood work is important because some of the tests can show other problems and the tests that show general inflammation (SED rate and CRP) are often high with RA. Also the rheumatologist should take some x rays of hands and/or feet to serve as a baseline for comparison in the future.

With that much Ibuprofen I would be afraid of tearing up my stomach. Even at 400 mg a day for a few weeks I start to have problems and I'm a 6'6" 220 pound man. I hope you can get some medications that help your RA and don't cause too many bad side effects. God bless.

----- Original Message -----

From: mrsjfranklin2004

Rheumatoid Arthritis

Sent: Monday, June 20, 2005 1:01 PM

Subject: a little funny story then a couple questions...

Hi kids...Well - went to see my FP on Friday and he was in a hurry anddefintely had "his crabby pants on"...He kept looking at this watch... I would ask if he had to besomewhere & if he wanted me to come back...I had my 22 month old very curious daughter with me and he said hecouldn't think straight with the extra commotion... I replied,isn't your daughter going on 1 year next month and told him hebetter get used to it...He scoffed at me when I told him my neurologist was 99% sure mytroubles were RA... he actually laughed and "well, I'm 99% sureit's Fibromyalgia"... come to find out from a friend who also seesboth docs that they weren't getting along... Guess some big golftourney team issue... My FP wasn't invited to play!!! I just lovebeing a scapegoat - don't you guys??Then he told me that all I needed was a good night's rest and I'dfeel much better... I told him to walk around in my body for a day -even after a good's nite sleep - and see if he changes his mind...I won't be going back to see him... but will definitely request tosee his wonderful PA, which I should have seen in the first place...So anyway... regarding blood tests... My neurologist had onlyordered regular type blood tests along with my RA Factor (which was9.1) Is it true that the RA Factor test can be quite deceiving?What tests should be done on initial visit to Rheumy? Whatquestions should be asked?So my good friend, Dr. FP, said to take 800 mg of Ibuprophen every 8hours, which I had been doing... He also suggested 1000 mg of FishOil capsules twice/day and 1 Tbsp Flaxseed Oil w/ food once aday... Any feedback or where to buy cheaply would be greatlyappreciated!!!Thanks much for your comments & ideas!!!