[Guntergirl]

For several years, I have had a swollen left ankle with very minor leg weakness and pain which would come and go. In the spring of this year, I mentioned it again to my PCP. She tested me for everything under the sun. My ANA test came back positive with only the RNP subset positive at 2.5 which had a range of 0-.9. My symptoms went away without treatment. I subsequently had two more ANA tests which came back negative. A few weeks ago, my leg pain and weakness returned. I also have been experiencing pre-hypertension all this time. MY PCP did another ANA test last week and it came back positive. We do not know the titer yet nor the subset value. All other tests are normal. What can I expect when I see the Rheumatologist? I also have severe endometriosis although I have no symptoms. Any help and/or advice appreciated.

 

[KarolH]

Hi Gunter,

I tried to chat in the chat room but you ran off. Welcome to the boards. I have RNP antibody too and it is associated with mixed connective tissue disease in high titers. If low titer then sometimes associated with Lupus. This is what I was told. Are you on any meds? I hope your Rheumy doctor is good and treats you accordingly. I also get pain, random swelling too.

Hope to get to know you better and next time hang in chat. We have fun in there.:wink2:

 

[Clare.T]

Welcome to the forum!

The anti RNP antibodies are associated with autoimmune connective tissue diseases such as lupus. The actual diagnosis of a specific CTD depends on the symptoms assuming there are some relevant ones.

You can expect a first rheumy visit to last 3/4 - 1 hour and comprise a physical check up and thorough questioning about health history throughout life and a description of more recent symptoms. Rheumies often run all tests again plus some, and a urine sample should be taken. They may order further tests like imaging.

Symptoms often come and go in these diseases.

Bye for now
Clare

 

[superloopie]

I also have this and was diagnosed with MCTD. I have a lot of arthritis type pain and swelling -- which I am hoping the plaq will fix. I do, though, also have a positive SM antibody as well, but all that seems like a foreign language to me! :lol:

 

[KarolH]

I think the SM antibody is pretty specific to Lupus but don't quote me. I am trying to remember all I have learned.:wink2:

 

[Clare.T]

Yes Karol anti Sm is specific to lupus. All these diagnoses depend on lists of criteria drawn up to describe various sets of symptoms. Some docs follow them more rigorously than others and many patients don't fit neatly into the classification boxes.

Clare

 

[debatat]

Hi Gunter and welcome to the forum. It is a great place to find info and support. I agree with Karol, we do have fun in the chat room!!!

Deb x

 

[Barbs21]

ANA CRPetc

Hi Clare, just looking at your reply, and seeing what should be done for first visit. My visit was with a junior doctor, who was more concerned with carpal tunnel syndrome than my RA or looking at other problems. The second visit was with the consultant, who was in a rush, and looked at x rays, and just said, oh yes RA. Didnt even ask about anything else, just said ok methotrexate. He also went in and out of the room to see another patient. I have spokent to my g p, and have now had ANA tests done. The only thing I dont understand is what the "numbers" of the results mean, it seems that the rheumy nurses dont want to commit themselves to any comments. My next appt is not until January, but feel that they dont listen anyway. It seems that everyone else knows what the tests mean, and it gets explained to them, I just get told, "oh its a bit high, so that means you have inflamation" Sorry, just need to know what to say to get my point across. Thanks Barbara

Welcome to the forum!

The anti RNP antibodies are associated with autoimmune connective tissue diseases such as lupus. The actual diagnosis of a specific CTD depends on the symptoms assuming there are some relevant ones.

You can expect a first rheumy visit to last 3/4 - 1 hour and comprise a physical check up and thorough questioning about health history throughout life and a description of more recent symptoms. Rheumies often run all tests again plus some, and a urine sample should be taken. They may order further tests like imaging.

Symptoms often come and go in these diseases.

Bye for now
Clare

 

[debatat]

Barbs, you are entitled to copies of your results and copies of consultants letters to gps. I have found out through good old google !! :lol: I get copies and then look it up. Anything I am unsure of I have asked the gp or consultant. Be prepared before your appt for questions that you want answers to. Ask it is your time and your health!!! Speak to your gp if you have any concerns they are responsible for your interim care.

Hope this helps
Deb

 

[Barbs21]

Tests

Hi Deb, Thanks for that, no one tells you anything!!! I didnt know I could ask for results or explanations, as the nurse just takes the blood and fills in my mxt book, but I dont know what it all means. When I go next, I will def ask for all info, I am seeing gp on 30th Oct, and will also talk to her. I get the feeling at the clinic that if you ask anything you are being a nuisance, and that they have better things to do. I was told to go for cortizone on 28th Sept, had a letter to confirm, when I got there I was asked who made the appt, as if I know!!! she went away, came back and said "you cant have it done til one calendar mlonth, so come back next week" Great!!! a wasted journey!!! in the meantime a letter arrives telling me I have missed the appt, and if I dont get in touch I will be discharged from the clinic!!! When I rang I got a machine telling me they would reply within 3 days, that was a week ago, had to go for bloods today, no one seemed to know anything about it, so was told to ignore it!!! Makes me wonder if they know what they are doing!!! Cheers Deb x

 

[KarolH]

Barbara I am not in the UK however I wanted to share with you that every time my doctor writes a script for blood work, on the bottom of the script I write "Please send a copy to patients home", and I take a highlighter and highlight it so it stands out. I also make sure when i register to let the girl know I want a copy.

It is your right, any test you have done, makes no difference what the test is. If you want it then let it be known even if you have to stop back and get a copy. I have 3 rings binders that hold all of my medical records and it is helpful when you need to look back and do a comparison.

Always keep this in mind.:wink2::wink2::wink2::wink2: