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Now hubby is diagnosed with both Fibro and RA

Started by fibrowifey, April 18, 2014, 01:13:48 PM

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fibrowifey

I haven't been here in a while and have been dealing with a lot going on with hubby.
He had his middle carotid artery on the right side and his inner carotid artery on the left side develop tears (disection). A clot formed on the right side and pieces were breaking off and causing strokes to the right frontal, temporal, and pariatal lobes of the brain. This is in addition to the right frontal lobe injury he suffered many years ago. We have had PT, OT, and ST and now all of that has stopped as medicaid won't pay for anymore visits. He can walk and talk though and has made improvements with his left sided weakness. Ok, that's why I haven't been on here much. Now for the big news.....


My husband had a Rheumatologist..she was terrible.  Tests didn't show inflammation... then she tells him she doesn't want to manage his pain or his fibro...she will manage his arthritis though...basically shots to the knee.
Hubby tells her his hands are changing and his hands and feet, knees and shoulders hurt terribly and some days he can barely stand it. He also told her one of his brothers was diagnosed with seronegative Rheumatoid arthritis and also tested negative on blood tests. Nothing....she did nothing...no hand X-ray...nothing.

We got our regular doctor to X-ray the hands...she didn't see anything but she isn't a Rheumatologist either. At least we had the scans and a Rheumatologist would be able to access them since they are on the same computer system. See, my bil wasn't able to be diagnosed until his hands were in claw shapes...they are chasing the RA and haven't found a med that helps as much as the doctor would like. He is on his fourth medicine now as the other 3 did nothing.

Well, I became determined to not let my hubby get to where his hands are in claw shapes before getting a diagnosis. I changed Rheumatologists and we had the appointment yesterday. What a difference a change makes. This doctor fully examined my hubby and looked at the hand X-rays. He saw the beginings of bone deterioration from Rheumatoid arthritis. He even consulted with the doctor at the hospital that did the report on the X-rays and he saw it too.
The new Rheumatologist sent us for X-rays of the feet and ran some blood tests for other sero-negative type conditions. This is basically a formality as the X-ray shows the damage that only Rheumatoid arthritis can do. We didn't want this diagnosis but, we knew there was something really wrong.

Now, hubby is on prednisone to try and calm the symptoms and will be starting a medicine for Rheumatoid arthritis as soon as the blood work comes back ruling out the other conditions. The doctor wanted to start him on the med but I asked him to wait...just in case.
the doctor says hubby has both fibromyalgia and seronegative RA. Hubby is already feeling a lot better the first day on prednisone.

The new doctor also said testing for inflammation is only a snap shot and you need to keep repeating the test to get a full picture of what is happening. The previous doctor would not repeat the test as the one and only time she tested it was negative.

If you feel like you are getting no where with your doctor, please for your sake, change doctors until you find one that will listen to you.

looneylane

Oh my! Praying fibrowifey! Glad to hear he is doing better with the new treatment and new Dr

countryboy

Sounds like you found a good one there.  Keep him and make sure your hubby follows his instructions.  Maybe help is on the way after all.
IT IS BETTER TO BE CONSIDERED A FOOL, THAN TO
OPEN YOUR MOUTH AND REMOVE ALL DOUBT.   But
UNFORTUNTELY MOST PEOPLE REFUSE TO LEAVE ANY DOUBT.  -unknown-

ANY FOOL CAN CRITICIZE, CONDEM AND COMPLAIN --
AND MOST FOOLS DO.   'Benjamin Franklin'

foxgrove

So glad you were able to find a better rheumy!!  A breeze of new hope and whoosh.. we're off and flying again huh.  It always blows me away what a difference talking to a doctor that understands fibro can make to one's emotions.  Bravo!!  Well done.  I'm so glad that you didn't give up and kept fighting for something with a real answer.  Your efforts truly reveal your heart of gold.  :bighug:
Where God leads, His hand always provides
...so keep Calm and code on....

Foxgrove

ronr

Isn't it just wonderful to find a doctor that isn't to busy to treat you like a human? !
Times are tough when "Happy Hour" is your nap.
My mind not only wanders, sometimes it leaves completely!

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