Went to the rd on NHS that I have been waiting 3 months to see.
She said she had never in her life heard of an anti ccp test and
refused to discuss it - she said that i was hypermobile and that i must
have just hurt my wrists when i was pregnant. she also said she
had no idea what was wrong with me and that 'time would tell' and said
that her first line of treatment for ra was nsaid's which were very
affective, after all there is no point giving you all these toxic drugs
is there. I questioned this and told her that nsaid's actually
don't stop the disease and she said she would not treat me for RA
unless she saw either swelling or - get this - JOINT OR BONE
DAMAGE. She said that i should see a dentist about my jaw - maybe
it was dislocated and i said i had had it x-rayed - she said that an x
ray might not show a dislocation! I said, of course it would - and why
do i have morning stiffness, same joints every day, flu type symptoms
etc she said she didn't know and time would tell. I said surely
if my jaw was dislocating it would get sorer the more i chew not better
(AS PER RA) I ended up walking out. Then i got a taxi and the
driver told me all about his pal who is so crippled with RA he cries
out in pain and no meds have ever worked for him and he is crippled
with it and nearly died taking nsaids. So that was nice.
Then I got home and my family were like, oh well then maybe you should
just forget about it - well i would if i could move in the morning,
work, walk even, chew, kneel down etc. I am absolutley at my wits
end. Any ideas guys please please please because i feel like ****
every day and I just have no quality of life and the only reason i
can't get treated is because i have no swelling.
I believe something is quite wrong. Try an internal med specialist. If it is not RA, it is something else. I know you are convinced it is RA but lots of things mimic RA. Things that doctors can cure.
Since the rd route is not working try internal med. They are the best dx detectives.
I agree...good idea, Marian. The person who told me I had RA was a doctor of internal medicine. And like Marian said, if it's not RA, then he/she might be able to figure out what is wrong.
Kelly
I'll third that!
Go to this new doctor. Tell him your symptoms and let them start a new investigation. Don't tell them you think you have RA. Let them form their own opinion. It's likely to be something totally different.
And in the mean time I would take some NSAIDS for your pain and suffering. I take them all the time. Yes; I'm on numerous medications for my RA, but through out the day I take 800mg of Advil at a time and it does a lot for my pain level. Just make sure you eat something before hand. That's why people die from it....they take it on an empty stomach and it burns a hole straight through. Just try it. It might work.
Best of Luck Julie. I know how frustrated you are. Hang in there.
I am sorry Julie...You must be so frustrated. My advise? Look for another RD. From what you said, yours was not very compassionate or up on RA like she should have been. To me, "time will tell" and not ever hearing of the blood test was a red flag. Right now.. I would put all my energy into being pro-active and finding another doctor(if your insurance permits). Doctors are people and it is up to us to find one that knows their stuff. And that does not mean we have to suffer and be satisfied with one that does not! And another tip...when you call to ask about a new doctor...if the nurse is not compassionate think that one through. Remember you will be working with her as well. If she is...take the time to ask her if the doctor is easy to talk too? And most importantly, if the doctor has lots of knowledge on the subject! Bold move you would be surprised at the amount of information you can get from a compassionate nurse. I have been so lucky and yes after seeing 2 Rd's who misdiagnosed me with Gout, I have found a compassionate doctor, extremely inteligent with great knowledge of RA. I hope the same for you! &n bsp; Susan Lee
Also the thing that keeps making me so sure it is (apart from the
symptoms) is the positive anti ccp because only people who have or who
are about to get RA produce this antibody in their blood, like only
pregnany women can make a postive pregnancy test for example.
Thanks guys and thanks for checking this board - don't leave me here until i can get on RA friends.
what does &n and bsp: mean? I did not put that at the bottom of my note and it appeared that way. If someone knows...let me know? Susan Leeare you having trouble getting to rafriends julie?
I'm sorry you're not having any luck with a dx
chin up Oh don't even get me started, i can post but it seems to take ages
(like days to show up - i'm using my dad's pc just now so once i'm back
on my own i'll have a 'tinkle' with it - i can't get into my hotmail
account just now either - weird
is your computer broken or just playing up?
So sorry to hear your experience Julie. I have seen 4 RD's over the past 25 years and because I am seronegative with clean x-rays but many joint flares and major fatigue and stiffness in the mornings........well........only one doctor diagnosed me based on 2 synovectomies with positive pathology of chronic synovitis (indicative of RA). Still, even after one doctor diagnosed me, 2 other undiagnosed me. I completely feel your discouragement. I have been through this for so long. It takes me another year or 2 of dealing with the pain and stiffness and swelling before I have the courage to go back to another doctor. I am going to see yet another RD the end of October. I haven't seen one for a year. The advice I can give you being in the same boat is to just keep at it. Document EVERYTHING and be persistent. That is what I will do AGAIN in October.
Jane
Jane - HELLO! that's awful - are you on meds? what are your labs, god that is terrible - get an anti ccp test maybe that'll help - what are you going to do? what do they tell you it is. maybe it's palindromic rheumatism? And internal medicine doc in the USA has 8 years of training to be an MD plus another couple of years to specialize in internal medicine. They treat major body systems, endocrine, cardio vascular, digestive, immune, ect. Often they are experts at diagnosis.Oh my you poor thing, you've been through the wringer. I have to agree with the others about seeing an Internist. A lot of Rheumatologist here in Florida practiced Internal Medicine before ending up in Rheumatology. Again, I have to agree that so many other things mimic RA. For instance, they talked about MS, Lyme Disease, Fibromyalgia etc... before I finally went to a Rheumatologist. The first thing he did was test for the RA Factor and wham!!!! RA Factor of 189...there we go. I hate having this disease just like everyone else but I guess I can feel grateful that I do have a positive RA Factor (at least they can't deny that). Don't think I'll throw a party over it though
Oh and by the way....how in the heck do you just "forget about it" when you are in pain??? Someone please tell me the secret to that one. Peace & Love....Neasy Julie, not sure but how about trying to see an orthopaedic specialist? They should cover everything bone realted surely. What is the worst that can happen? Not sure how helpful you GP is, but how about getting them to recommend a different type of specialist. I have tried the "forget it" route and it doesn't work. I tried to convince myself it was all in my head and it worked for about 15 minutes until I bent down to pick something up. Niki Yes Julie, I have had the anti ccp test and it is normal also. My RA factor, sed rate, ANA, anti ccp test and whatever else I have been tested for are all normal. It is through my history since 17 and joint surgeries that have led to the yo-yo diagnosed/undiagnosed misery. I take Methotrexate 15 mgs. weekly. I have been taking MTX for 2 years. I was also taking Enbrel but the last doctor told me to stop Enbrel and the way she treated me at the visit is when I never went back. That was in February. So, I have MTX till the end of this year (insurance allows a 3 months supply with 3 refills). Jane Julie, last week I went on the Arthrits Foudation web site and I asked the question Can I have RA without swelling? A RD wrote me back and explained to me how so many people can have RA without swelling as so many can have it without being RF positive. My computer crashed and I lost all my e-mails because I was gonna copy it to you. If u remember me, I too have no swelling and I know how u feel. It is very frustating. I have worked with an Internist in the past and we had alot of patients with RA. Look into it. They are very knowledgeable in all areas. The one I worked with was the director at a Dialysis center. So there goes Rheumatology and Nephrology in one man (lol). I will keep you in my prayers and, let me know what you decide to do. Jackie
Copyright ArthritisInsight.com