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Hi everyone

 

just registered and would really appreciate some advice. I am 36 years old with 2 kids and have had some kind of joint pain for as long as I can remember, I have scoliosis of spine and most of my pain has been in lower back and hips (especially during pregnancy) the last couple of years I have been more achy all over and have felt very lethargic and like i am going down with something alot. About 2 months ago I caught 'slap cheek' from my kids which gave me terrible joint pain all over which apparently can happen but 8 weeks later I am still suffering. I have had blood tests taken and got results back today as follows ( i have appt with my Dr tomorrow to discuss further)

Red blood cells, hemaglobin and packed cell volume - all LOW

ESR - slightly high (13)

RA Factor positive with result higher than 16 (this means nothing to me!!)

Obviously I am no concerned and would appreciate any advice on what to do from here and whether these results indicate RA.

Thanks to you all

Suzy

 

Suzy~I noticed your post and didn't respond because I don't really have very good knowledge of blood counts and numbers. I'm was was termed seronegative years ago and I haven't even discussed it with my doctor since. That' been about 12 years ago.

My first RD dx'ed me before the blood work was even back from the lab. It's never made much difference.

I would like to say welcome....hope to see more of you here.

Lovie

Sounds like you have something going on.  A RD is the best person to do a diagnosis.  There are about 200 kinds of arthritis/auto immune diseases. 

Hope you get a diagnosis soon, often it takes up to a year.  They have to observe what is going on.  But don't be afraid of a second opinion.  Always ask for a copy of your test results.  This makes it easier for you to keep track of things.

Kieye

Gosh.. I do not know what your # are suppose to be?? my doctor always just tells what is high and what is good. And she also, has said test results are not the only factor. She goes by how i am feeling, i keep a daily journal and take it to my visits so, she can see what I'm up to. you may want to for a while, it is hard to remember how you felt 4-5 weeks ago. Good Luck! GinaI have a friend that knows a doctor...a Retired Rheumy...Maybe I can ask him what the numbers mean...Roblyn

Hi Suzy,

Sorry I am late with the Welcome...

Some days the hands work and some days they are on strike.

I sure hope you get some answers soon.  We may not always want to hear we have medical problems but at least when we know that we do, we can do something about them... and that's part of feeling and getting better.

Keep asking for answers as to why you feel so bad, someone will listen to you and get you started in the right direction. 

I hope you are feeling a bit better and that you have a nice week end planned for yourself...

Keep us posted as to what is happening with you.

Take care of yourself Suzy.

 

Toni 

 

Hi Toni

Thanks for replying

I am doing ok, have managed to get my hospital apppointment to see rheumatoligist next friday which is quicker than I thought, so hopefully might get proper diagnose soon.  Any idea what they will do on my 1st appointment???

Thanks for everything

Suzy

 

 

Hi Suzy,

so glad that you are doing better and as for getting a RA appointment so soon, that is AWSOME...It usually takes much longer than that.  

They will order blood work, lots of it...check out your joints to see if there is any swelling in them, also if there is any warmth coming from the joints...  You will be asked a lot of questions as to what where and when all of the symptoms you have started to show up...How your reactions to them are.  They really need a lot of impute from you, so if you can write some of the problems that you are having down on paper for them, that will really help them...If at that time they are pretty sure it is RA, they may put you on some medications right away, till your blood test come back, with the information they are looking for.  That is what they did for me.

Once my test came back and the information they needed was there, they put me on MTX and Prednisone along with Naprosyn.   Blood test where ordered for every month for 3 to 4 months and then every 6 to 8 weeks after that...But also remember that your RA test may come back negative, that doesn't mean that you do not have RA only that your RA is sero negative.  As time goes on, they may or will have to add different medications to help you out...That is mostly the rule of thumb when it comes to RA.

I am so glad that you managed to see a RA doctor so soon... if you do need treatments for RA, they can give it to you sooner and maybe stop some of the RA progression faster.

Let us know how your appointment went...

Take care Suzy and good luck with your doctors appointment.

 

Toni

waddles38661.5546759259Hi Guys

Well I had my appt with rheumy on friday, I didnt know what to expect and  have come away a bit disappointed. I went armed with loads of questions and a report of every medical problem I have ever had incase it was relevant, but he was very vague, nice enough guy but didnt really give me a chance to talk much. He gave me a very brief examination just quickly looked at my main joints for signs of joint damage and that was it. He immediately said he was almost sure I didnt have RA and that he wanted to test me for lupus. He sent me straight away for blood tests and a chest xray and I have got to go back for an ultrasound on my stomach, he wants to see me again in january. I dont know what I expected him to do really but I think I hoped he would atleast prescribe me something to help symptoms. I am not quite sure why he is so definate without any tests or proper examination that I dont have RA, anyone had a similar experience. My father was diagnosed as having lupus along time ago - he has a serious kidney disease and has been on steroids for years so when he is tested now his results are negative ( they say that the steroids are suppressing it) also my older brother had leukemia so I think there is a problem somewhere in my family. My biggest fear is that all the results  will be negative and he will send me away to get on with it - is this normal????

Would love to hear your thoughts

Suzy xx

Welcome Suzy...... A low blood count can be a sign of a type of anemia. It is not uncommon for pts with RA to be anemic. The sed rate is a marker for inflammation. The higher the number, the higher the amt of inflammation. It is common to have this elevated with RA, esp when you are having a flare up. Depending on your lab, the RA factor results are different. When you get to your new Dr he/she will have a questionaire to fill out most likely. Be open and honest with your answers.

I read as much as I can about this disease. Even though I am a Registered Nurse I dont know everything. To be quite honest, I never knew that this disease was so terrible until I got it. I knew what it was but I didnt know how it really affected you.

Dont be afraid to ask questions. There is no such thing as a stupid question. Best of luck.

Lesle

 

Suzy9024,

Hi, what happened to you with your RA doctor sounds similiar to the way my doctor is (unfortunately). I've had my doctor since I was diagnosed back in 02'. I sometimes have a list of questions for him but his answers are pretty short and I "always" feel he's rushing me out of his office. Sometimes when I am there for a check up, he doesn't even examine me! My doctor was highly recommended and is the director of the department. My husband says I am not a good listener and the doctor doesn't tell me what I want to hear but I do not agree with my husband (at all). At first visit, I like this doctor but as time went on, I don't feel that he is really giving me the time of day which I as a patience should not feel.

If you are not pleased with your doctor (especially this early), I would look into one that has a better bed side manner but then on the other hand, you can give him another chance. It's really your call. But I wouldn't waste too much time. The sooner you know what you have, the better it can be treated. Good health to you!

 

Suzy

I am so sorry to hear that you didn't get any specific information.  I know how much you wanted some answers...Don't give up the ship yet.  It took a little over 9 months for me to get my DX.

Try one more time with the doctor and if still not getting the answered you deserve...Find another one.

Keeping my fingers crossed that you will soon have some answers.

Take care of yourself Suzy,

 

Toni

If you do an ANA blood test that will help with LUpus diagnosis. Also yr CRP levels will tell you the level of disease activity (for RA).
I am not a doctor but it does not sound like RA. Usually you will have morning stiffness and at least two SIMULTANEOUS joints swollen eg both wrists etc.  It sounds like another autoimmune disorder.
Sorry cant be more  help.
Cathy (HipHOp)

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