checking in

I think I have finally come to the end with my current RD.

Those of you who know me- know that after a horrific onset and then getting things under control with MTX and massive doses of prednisone; I tapered off of the prednisone and continued to enjoy  pretty good health with only minor daily pain and without significant flares. I then had elevated liver enzymes which caused my dr. to discontinue the MTX and kept re-testing my blood to see if they came down. They did after a couple of months and lo & behold I felt no worse off the MTX than on- so he said I could stay off and be monitored.

This month that will be 2 years!

However towards the end of this summer (I believe) I started to feel like maybe something was going on-I was feeling more painful and fatigued, etc. My dr. has been claiming I am in remission forever because I don't have prolonged morning stiffness and this pain I have every day (hands, feet, ankles are always tender but sometimes actually painful)- he discounts because he cannot SEE any swelling, disfigurement and my blood reveals normal levels. (always has- except during the bad onset where I was blown up with swelling and then ESR & CRP were off the charts. RF- always negative) I have never called this remission.

It got to the point where it appears he does not even think I have RA. I have been having tummy troubles which I relate to stress and he is now testing me for all kinds of autoimmune bowel diseases. He also said at last visit that I have fibromyalgia and I should try Cymbalta. I don't think I do and no thank you.

When he examined my feet- this time he said he saw bunion activity going on but that's caused by SHOES.

My feet have been bothering me a lot since late summer, always hurting when I walk, sometimes can't walk right after I take my shoes off, and always tender. I thought I saw the shape of my feet changing and a couple of toes curving but he has me thinking I'm nuts so I thought I was imagining the change.

Anyway after I left his office I started thinking....I haven't had xrays of my hands & feet for at least 2 years. Maybe there is something going on with them that an xray would show despite the fact that I have very minor swelling if any. They have consistenly been tender and or painful all along. So I asked the doctor. he got pissy saying the only thing it will show is if there is OA causing the bunions but if it makes me feel better he'll order them.

  If xrays do not show RA activity why do they insist you have baselines taken at diagnosis? Why does he choose to discount or blame my hand & foot pain on other arthritic conditions when hand & foot are classic RA symptoms?

He has me to the point that I want to see something on these xrays RA related just to say I TOLD YOU SO- even though deformities are the last thing I want.

So frustrating.

Anyway- I have taken the blood tests he ordered and will schedule my xrays but after the results are in- I do believe I will schedule a 2nd opinion at the very least.

Thanks for listening.

Hope you all are feeling well and are enjoying the holiday season.

 Wish you well, definatly go for a 2nd opinion of course you know they will put you thru the mill and you'll be answering all those Questions again, But if you can go prepared it will help keep a diary for a while before hand then write down your main issues also any issues you've had with medications that will all help make the visit go better

as for those bunions? could they be Rhumy Noduals?

i'm really begining to think Doctors that either cant get into an area they wanted or ones that have terrible bedside manners get a note saying - you go be a Rhumatologist   because Gosh So many seem to be So hard to deal with

Like that Gynacologist i recently went to he was Great, But seriously in the 25yrs ive been playing this RA game ive only come across 2 that were Nice and one of them was not just a Rhumy he was also a general physician (or something like that)

i know RA is weird and the autoimune dieseases are tricky but We Know how we feel and yes there may be people out there that every headach is a "tumor" but seriously Most of us Do not Whinge for Nothing and maby they need to rewrite some of the RA definitions cos we All cant be the odd one that has diffrent symptoms

We are thinking of you Keep Strong

i found i had good results from it for Quite a while (till i had problems)

 but i have also heard other Good results from it.

and are you still on Prednisone?

and Your Feet - i have feelings of walking on glass and have a terrible time getting shoes they hurt but rarely swell However i have less mobility in them and have some deformity to the little toe and 2nd toe - i used to be very flexible to the point of double jointed and often used my feet for daily chores i'd pick up things even write with them But now Very limited - so for the normal person i havent lost a lot But for Me i Have Massive Loss of movement

Lastly i had my Dr tell me it is Not uncomon to have No swelling and No Deformity nowdays due to the early drug interventions, and was even told the only deformaties they'd seen were from people that went natural and didn't use the drugs.

There are days that I just feel pain all over, the last few days I was so stiff and painful in my lower back and I thought, now what? but after the Enbrel and MTX it subsided so I guess the RA is now there too. Like another poster said, we can get pain in other places, I have even had painful knees the past few weeks and have not had knee pain since my initial first visit to my rheumy.

It could just be that you need to get back on meds for your RA. RA never really goes away, once we have it, we need to stay on our meds, even when we feel better. I agree with Golitho about the second opinion.

I had my pelvic ultra sound and it was an internal one which surprised me, I guess the bells started going off when I was told to remove all my clothes before coming into the exam room and then being told to scoot my butt down on the table and put my feet in the stirrups... but when the wand came out and the tech said would you like to put it in or should I ? I about died with embarrassment and said Oh my I wasn't expecting this at all! You just do it!

She said that generally they are painless but since I was having pelvic pain it might be. It hurt and it took a long time. She couldn't find my ovaries and was pressing on my belly trying to get them to come out of hiding. I said maybe they disintergrated since it's two years since my last period!

After that I got to have a mammogram! There was another woman in the waiting room having the double procedure also and when I passed her I said I'm going home and having a big fat martini!

The mammo results were fine. The ultrasound showed a 1 1/2" fibroid that shouldn't be a problem, an atrophied right ovary with a small cyst that seemed to be on it's way out and endrometrium lining that is 9.7 thick which is way too thick for someone my age. Also what looks to be an 8 x6x9 mm polyp which may be causing the lining to thicken.  So after first veing told this by the NP who did my pap and said I should come in for a biopsy, I talked to my GYN who said come in for a hysterscopy so he could see the polyp. If it's smooth walled it's fine, if it's irregular he will take a biopsy and it may need to be removed but at another time. No rush it can be after the holiday.

Here's the clincher. Ever since my Pap and then more so after the ultrasound I have been having terrible low back and lower abdomen pain. I asked him if any of these things they found inside would cause it he says no! I asked if he knows anything about fibro because my RD said he thought I had it and he said he really doesn't know much. he said I should make an appt. with my GP.

I'm so tired of all this nonsense.

Now I wonder why I left it so long!!!

Gynae problems can be so exhausting, as I said the hyster sister site was very helpful even when I had decided not to go ahead initially I got so much support from them and they helped me so much with options etc.

It was such a good source of information.

Even after it all they help with HRT or not etc etc very helpful.

Heart goes out to you.

Thinking of you, as if we don't have enough to deal with ah?

I have one ankle playing up on me at the moment otherwise I am really good. I am losing all that prednisone weight slowly slowly feeling more myself again. But start work again next week so.....

Best wishes to you, go