Visit to Consultant Rheumatologist-Help?! | Arthritis Information

Hi guys, I'm seeing a consultant in January and I'm a little unsure about what I should say...

The last time I went to a rheumatologist he sent me away with nothing. He was very rude, basically called me a liar (for my g'father having RA on his death certificate) and just sent me away with nothing but these lines echoing in my head: "You do have something. But if I diagnose you, you cant work for more than 16hours a week... And you dont want that...".

For 2 years I ignored the immense pain thinking no-one would help. But my partner, Jay, who has messaged on these forums, has built up my confidence to get another opinion from a different professor. But I'm still unsure about what I should say? What questions could I ask that would help me get the best help??

Thanks, Tom x

Ok Tom the best thing to do is to sit down and write out what pains etc you are experiencing after you have your list then write out questions you want to ask. as to can xrays of your joints be done to see if there is any deteriation of the joints. Can bloodwork be done to check your levels and if the level isn't there to say you have ra it doesn't mean you don't have it. Ask the rd if your thyroid should be tested because if your thyroid is not at proper level it can make your joints ache too. If the rd doesn't thnk it is ra then ask them what they think it is and why. Now I don't know if this is allowed in the UK but here you are entitled to a second opinion, get one if you can. write down your family's history with ra and take that in with you. If you have to do some reasearch online and at the library before you go to the rd and write down any information and questions you find that pretain to what you are going through right now. Take all this with you when you go to the rd, this way you can make sure you give him all the info you need and you can make sure to ask the questions you need to find out what to do from this point on. I hope this helps and welcome to the board. memeThat's sooo frustarting. Not diagnosing you doesn't make the condition not exist. There sare 7 criteria to diagnose RA and if you have 4 of them it means a positive diagnoisis.

The criteria for the diagnosis of rheumatoid arthritis (RA) are the same for older and younger persons:
1998 revised American College of Rheumatology criteria for classification of rheumatoid arthritis. Patients should have at least 4 of the 7 criteria, and the first 3 must have been present for 6 weeks or more

Inflammatory soft tissue swelling or fluid in at least 3 joint areas simultaneously, observed by the physician. This reduces the joint spaces Aggregates of inflamed subcutaneous tissue cells which collect over bony prominences or extensor surfaces, or in juxta-articular regions, as observed by a physician. The skin is thin and fragile above the nodules. (rheumatoid factor is an antibody to the Fc portion of IgG and may be responsible for amplifying the inflammatory response in the synovium)
Abnormal levels should have been measured by any method that has been positive in less than 5% of normal controls Classic changes must include erosions or unequivocal bony decalcification, localized or most marked adjacent to the involved joints.
Osteoarthritis changes alone do not qualify
Involvement of joint sites in established rheumatoid arthritis

Note that late-onset RA is:

Less likely to show hand pathology
More likely to show shoulder and hip swelling
Less likely to be rheumatoid factor positive.

That said, I had only 3 of the criteria and was immediately positively diagnosed.

Please push for a diagnosis. If what you have is RA the earlier you seek treatment the better your long term prognosis will be.
Hi, sounds like you had a rough time with your last RD visit. In my opinion, don't stand for it. Sometimes with this disease we have to be very proactive and assertive to get the help we need.

Write everything down, all your symptoms, all your questions, be very prepared. Make it clear how much pain you are in. I used to make a joke of my pain levels to my doctors to get through to them how severe it is. They would ask me how bad it was out of ten and I would say 35 and then tell them I was serious. And it's true we usually live in unbelievable pain levels...we don't have to.

Obviously you sound like you need to be started on a DMARD (Disease Modifiying Anti Rheumatic Drugs) but also you need to get some serious pain relief organised for yourself until the DMARD starts doing the job. I find working with my GP for pain relieving medication is better than with my Rheumy. She has more time and pain relief is a tedious process, it can take a couple of months hit the right combination.

I think definitely get this second opinion. And don't stand for any rudeness. Find a rhuemy that you feel you can work with and you feel comfortable with...it's very important. And if the first guy was rude, then move on and find someone else who is good to work with. The same goes for your primary care physician, keep changing until you find one that is right for you.

For some reason, because this disease is invisible we seem to often be treated like we are lying from even our own doctors, this can be very damaging to someone who is newly or going to be dxed. And I am very sorry this happened to you.

Also with writing down your symptoms I would have a copy to give to the RD. But remember the symptoms which are just 'obvious'. I had night blindness, difficulty with my speech and a range of other symptoms which don't seem like they are RA but they are.

I hope your next consultation is more productive and positive for you.

Hi just wanted to welcome you to the board I can't really add

anything that the ladies haven't told they are pretty informitive.

Have a nice evening.

Keep in touch and let us know what happens. There are lots of people here that are caring and very knowledgable on the subject of ra, we have been there and done that! LOL

take care

Hi Tom. Welcome to the board. You have been given some good advice here. I have changed my rheumatologist because of his attitude and i now have good one . I went in fully armed with a diary of events and problems to my new rheumy, he read it all over carefully and re-tested my bloods, xrays etc. and I am now getting the help i needed. I cant understand the reason for him telling you that you cant work more than 16 hours a week etc if you have RA. The only reason for that would be if you felt unable to do so in yourself. I claim disability but only after battling with RA for years and eventually unable to hold down my job. I coped for years working with RA and i worked more than 16 hours a week. If you are unable to work full time, you can still claim disability and work part time. There are various levels of claims you can apply for.

http://www.direct.gov.uk/en/DisabledPeople/index.htm?cids=Go ogle_PPC&cre=DPAC_Franchise

This will give you the information you need.

Let us know what happens

Take care

Lisa

I wish I had seen this months ago. I have a great rhuemy but went through heck with my primary doc that caught the RA in the first place. So I agree with everything that has been said above just go in with a battery of questions and insist on answers.

Buried in this website is a section called "Your First Rheumy Visit" and here's a list of questions you might consider:

What are my options for treatment?
What are possible side effects?
Can we work together, I will respect your ideas you respect mine?
Please explain the tests to me..ie: sed rate...RA factor, ANA...
Will I receive all my lab reports?
Are my children at risk for this disease?
What does that mean?
What type of approach do you recommend I intially try?
What are your feelings about other methods of treatment- i.e. Chiropractic, Herbal etc.
Will you let me play an active role in my treatment and in the decisions you make that will affect me?
What do the test results mean?
What is the purpose of the prescribed medicines?
How fast should the medicines help and which symptoms should be reported
immediately?
What is the best aggressive treatment to take at that time so that you don't have damage?
How can I educate myself about this disease?
What should I expect to feel like and notice?
What are the side effects of the meds?
What kind of activity can I take part in?
How do I get in touch with you if I'm having a problem?

Unless you are filing for some sort of disability through the governemnt, ect. or feel you are unabel to focus or do your job physically, why is the RD stating that you cannot work over 16 hours per week?

I cannot even find a job. When I did in the past I was unable to hold it for very long.

Maybe you need to enlighten this RD or search for another one that believes in patient report,human suffering and has witnessed it first hand and knows what he/she is talking about concerning RA.

WElcome to the board, so sorry you have RA.

jode

Hi Tom and welcome. It looks like these very informed people have guided you in the right direction. Let us know about your progress. Welcome to the board. All I can add is don't let them convince you "It's all in your head". I believed it when I was told and promptly went to all my head dr appts. Well, 2 years later, I got a real dr.

Hi Tom!

Glad you joined us! Say 'Hi' to Jayson for me!

Pip

P.S. Dump the rheumy!