Need help

[rickZ]

I have been seeing a rheumatologist for the last 7 or 8 years. I was reffered to him after I had to have surgery to remove an effusion in my left ling that had gotten to thick to drain and had to be cleaned out by hand. I had this problem for about a month (it happened before too) and in analyzing the fluid it was determined it was associated with a rheumatoid disease. The doctor I had been seeing always reffered to my problem as rheumatoid disease but never used the word arthritis. I have sinced moved and I am seeing a new doctor, she says I do not have rheumatoid arthritis and when i pointed out my previous doctor never called it arthritis she dismissed the difference. She said her Dx was based on the fact that basically my hands are not a twisted wreck.

My latest blood work showed that my ANA was 1:40 homogenous (which she dismissed qucikly) with a high RF poisitve normal is <14 and mine was 43. My RF has always been high while my ANA has been positive in the past but is generally under 1:40. My sysmptoms are painfull joints, sweeling, and stiffness (I always have fibromyalgia which the new doctor agrees with). I was on methotrexate but in switching docotrs I ran out and havve not taken it for 2 months (was taking 6 pills once a week). I had success with the methotrexate before but the new doc will not give it to me because she said if I had rheumatoid arthritis and had not been taking methotrexate for 2 months I would be at my worst and I was not. I had also been taking ultracet 37.5 mg 2 tabs 4 times per day but she will not give me that because she said you should never take that for more than 5 days at a time and I have been taking it everyday for years. I am also being given much less lortab than I am use to. I am now as you can guess in pain everyday (more than usual).

Does anyone have an opinion as to what may be wrong with me. I tend to believe my previous docotr as his treatment gave me relief (while not 100% I had been feeling much better than I do now) and he has been a rheumatologist for the last 39 years. This new doctor is barely 39 years old. I just want to have my life made managable as I have given up on any hope of ever being normal amny many years ago. Please help me.

rickZ

[Cindee56]

I don't really have an answer for you, but I want to tell you I totally sympathize.  I have chronic pain and was also diagnosed with fibromyalgia.  I have a lot of problems with my back and neck which causes much pain in my arms and legs.

I think the fibro diagnosis is just a name they came up with when the doctors don't want to diagnose you for your pain.  I'm no expert, but it sounds like you have rheumatoid arthritis, esp. if the methotrexate helps you.  My sister has RA and it goes in cycles with flare-ups and periods when you feel OK.  Your doctor sounds like an idiot to me.  I agree that your previous doctor was at least trying to help you.

I have not found one doctor to take me seriously either.  The rheumy I have just keeps saying fibro, and I think it's more than that.  I don't take any pain pills--they bother my stomach and I don't want to get addicted, but now my pain is getting really bad and I may have to try--IF I can find someone to give me anything.

I understand about the quality of life.  Mine is not too good.  It is very difficult when you have to practically beg these doctors to help you.  If I were you I would either go back to the other doctor or find a new one for another opinion.

[txsilver]

It sounds to me like you need to get to another doctor.  You were being successfully treated by your previous doctor.  It is possible to be off of MTX for 2 months and still be ok and still have RA.  There is also the possibility that you no longer require MTX to manage your symptoms and would be ok on plaquenil or another comparable medicine.
If your previous doctor does not know someone where you live now, try getting with a support group and finding out who patients recommend in your area.  Please keep us posted on how you are doing.