Blood Test Back, lots of ????? | Arthritis Information

 

I orginally posted in the new area because my 15 year old has lots of
symptoms of both RA and Lupus. Then I posted the following this
morning and someone suggested I post to this section for help.

Alright, the lab mailed me the labwork results because I also have to
forward them to another doctor. Everything looked normal, EXCEPT,
chlorida, serum was low. Her RA factor was 32.1 and her sedimentation
rate-westergren was 45. Her appt is Friday with the doctor. Does this
mean she does have RA?

  Hi Tammy

 I'm new to this as well so I can only give You info that I have  found through doing research online. The sed rate is pos meaning she dose have inflamation in her body and the RF is pos as well. I can't say what she has but there IS something going on.

 You need to see a Rheumatoid DR to find out what that is. RF can be pos in many autoimmune diseases.  I hope this helps. There is another web page  called The Uveitis Online Support Group. Find this group and they have a Kids and Parent support group with TONS of answers and support for both Parent and Child. Some children with JRA develope Uveitis and she will also need to see an Opth. Many of the childern in this group have JRA.

Take care Kat

 

kat34138874.3941203704She has already seen a RA. That is who she is going back to on Friday. I
really do look forward to the discussions that these groups have. It is so
helpful.   Thank you for your reply.

It looks like no one is putting in their two bits today and this is not a subject I know much about. But lets get it back up at the top of the list.

Terinski gave us this link not too long ago, http://www.labtestsonline.org/understanding/index.html

You might also want to do a search on blood tests on this forum. That way you'll pick up previous discussions.

More than likely if she is showing symptoms that RA has and the RF is 32 then more than likely they will say she has RA.

I still get "we think you have RA" from my doctors, this being because they really can't diagnose you as RA until they gett definate results that say so.

I got some lupus showing but not all of it points to lupus, also signs of RA and OA etc. etc. etc. so they say I "do" have OA, They believe i have RA and are watching for the lupus.

It's annoying I know.

Hi and Welcome. I hope you get your answers soon and hopefully your doc will start treatment right away. Some docs are more confident to start treatment even without a definative diagnosis because many of these diseases overlap and so do the drugs. Good luck!Well the doctor said "it looks like RA". He had already started her on a
anti-inflammatory when she seen him 2 weeks ago and it had helped to
where she would wake up not in pain and not need to many motrin or
aleve. However, she must of jinxed herself telling him this because she
woke up this morning with her knees bothering her. She has a lot of
steps at school so she waas dreading going. He said he did not think
lupus was an issue and that we would just monitor or symptoms and if
she needs her meds changed then we will do it.

We have considered moving to FL becauase I have family there and it is a
much smaller town where all my kids would go to school the same time
and get dismissed the same time (elem, middle and high school). This
would help because I always worry about her being by herself with the
diabetes issues and now this since there is an hour lapse before her
brother gets home. The school are much smaller with no steps and I
think that if she does not have to deal with cold winter months it will help
her a lot. During the winter she was in constant pain. Just have to take
one step at a time. I didn't chime in earlier because I'm sero-negative, so I don't pay much attention to the sed rate & RF factor & don't really know what they mean. It hurts to hear that someone so young is going through this. School days are tough enough without diabetes & JRA. It's good that you're looking out for her. Good luck. 

Was there a test done called anti-CCP by any chance?  This is more specific for RA.  Did she have a positive ANA titre?

Here is some additional info on diagnosing RA... http://www.arthritis.org/conditions/diseasecenter/RA/ra_diag nosis1.asp

 Hi Tammy

 I hope she is feeling better, try to find info online for JRA and support groups for the same. The ANA test is sometimes weakly Pos in children with JRA and at a High titer is most likely Lupus,the Anti-CCP is only Pos in some children with JRA not many.

 Take care Kat

kat34138875.4075694444I am not sure if there was a positive ANA test or not. She told me today
that she feels very tired and shaky but not the shakiness that she gets
from diabetes. Plus her knees are really bothering her. That is what
breaks my heart. Teenage years are hard enough and she is suppose to
be having the time of her life. Instead she has to deal with shots, pills,
pain and watching everything she does so it does not cause drastic
measures later in life for her.

Does anyone else seem to suffer more with pain during the colder months
or am I putting a little too much into it with the Florida move. I just do
not want to wait until after school would restart and have her go through
additional stress of being pulled out of one school and throwned into
another even though she likes the people there and has many friends
already.

   Hi

    I hope someome else will help out with this one because  I'm not sure. From what I read RA and JRA are not really affected by the seasons other arthritis like OA ARE. Please ask Your Dr about this and do a search online. You have an appt on Friday so I would write down all of her sypm and as many questions You feel need to be addressed.

 Take care Kat

 Hey Tammy,

  How did the Dr appt  go? Did You get any more answers? I hope You have gotten some clarity with these issues and she is feeling better.

 

 Take care Kat

I have the same problem its not the shakiness from the diabetes im not sure what its from And i can try to sleep i just cant i toss and turn so im exhausted and ive bben having headaches. I hope she will be able to make it through high school its tough. Good luck with whatever desicion you make.Sorry everyone that it has taking me so long to get back. Been very busy.
Katie has since went back to the doctors many times and had many more
tests done.

First, she had the scope which came back good. The gastrologist believes
the stomach pains may be part of RA. She is still on medicines with him
but goes back tomorrow to be weaned off of one.

Second, she ended up with a big red and brown rash across her chest.
Very scaly, I thought she was peeling at first but it stayed for weeks.
Then weekly she came down with a rash on her scalp the size of a nickel
with a bunch of red little raised bumps in it. Usually last a few days and
then goes away.

When she went to see her diabetes doctor she had the rash on her face
that no other doctor had seen and he kept asking if she had been tested
for lupus. Brought it up several times.

She went back to the RA doctor last week who ordered a repeat of the last
blood work and also some new. This time he ordered the Anti-CCP which
came back as Weak Positive. Her RA factor and sed rate have both went
up from the last time. Still under 100 though. And this time he ordered
a C-Reactive Protein which came back high. ANA negative. Does this
mean it is RA? Since the ANA is negative does that mean no lupus or
could she still have lupus with a negative result? They also ordered lupus
which was negative.

Any comments would be appreciated.

Thanks, Tammy

Tammy...

Just to answer a couple of your previous questions.

1. Weather related pain?  YES !!!!  It's very true.   If you go to weaterchannel.com you can pull up something called the aches and pains forcast.   It's very true.   Especially in damp cold weather.   I live in Michigan which is horrible for these conditions.  

2.   You can have the butterfly rash and all things Lupus with a neg. ANA.   Be sure that they also check her for organ issues (Kidney mainly) because of her Diabetes and now the RA.  Something that you want to keep a close eye on anyway (as I am sure you are aware).

3.  Most RD's don't go by the numbers persay... they just go by it being positive or negative.  Don't fret over the numbers.   Just push them to treat her aggressively.   Once there is one autoimmune disease (as again I am sure that you are aware) many can and usually do follow.

Be positive... focus on quality care for her, and most of all try to remain strong !!!!

 

Olive,

Thanks for the info. Especially the weather related question. Not to
many people give input on this one.

Yes I am aware of all the issues that goes with auto immune. Luckily her
TSH remains to come back normal even though she has developed a
goiter and it runs in the family.

She is a very strong girl and we try to stay knowledgeable in all areas so
we know what to expect and watch for.

Tammy, sorry your precious girl is so sick. Aggressive treatment is what she needs even if they don't have all the answers yet. Her sed rate is pretty high. I'm not an expert on any of the other numbers.

It's a lot to consider moving. Weather bothers me and I live where it doesn't change much. Altitude is also a consideration, especially if she also has Lupus.

Become as knowledgeable as you can on each of these illnesses that come up. Research them. Then, when you go into the doctors, you will be prepared to ask the right questions and push for the right tests.

Also, teach your daughter as she grows up how to start advocating for her own care. I've had to put a lot energy in doing this for my daughter and now I am starting to see it pay off. It also gives her a feeling of more control when the whole world seems to spinning out of control.

Don't hide things from her. I forgot how old you said she was. Would a children's hospital be helpful to her.

Climate is a big consideration, but so is family and support from friends. And, I would consider the second more important than the first. However, I've never lived somewhere as cold as you. I live in the desert.

One consideration in some place like Florida is how are you going to handle getting meds if hurricanes hits. While it isn't as cold, the weather changing is the problem with RA because of the barometric pressure.

A smaller town is nice because it can be a good support system. But some small towns are not that way. Also, where are the right doctors for her best treatment. That is a really big factor especially when she has so many problems.

If you decide to move, make sure you are close to good specialists.

Just some thoughts. It's an awful lot to be going through.

Oh, one thing that might be really helpful for your daughter is finding others her age that are dealing with these kinds of problems. Other kids can be really cruel and not understand. Her teachers might not understand. But another friend with similar problems understands without explanation. Hi Deanna,

Yes that is all a lot to consider. We have lived in the small town before
and Katie has even went to school there. The kids were great and very
understanding as were the teachers. Here in MD we have had issues with
the larger schools and teachers being rude. She has had lows from
diabetes and had to just walk out of class because teachers would not
believe her. She definately knows how to stand up for herself. We always
tell her to deal with the health issues first and then we will deal with
teachers later.

There are a lot of specialists down there in FL but it is about an hour drive
to them. I really do not mind if she can be at ease and enjoy life a little
more.

I was reading about the barometric pressure and RA. I really do believe
that she suffers just as much during the summers months here in MD as
she does during the winter due to the pressure constantly changing. As
far as meds, we are always well overstocked. I make sure she always has
everything that she needs just in case.

When Katie was first diagnosed with diabetes she went to childrens
hospital but I was not happy with there service and the way they wanted
to treat her. I ended up finding a doctor in a diabetes center that would
see her and she has been seeing him ever since. He is really nice and she
likes the way he deals with her. So I think that she will continue going to
"Adult" doctors.

Thanks for all the information,
Tammy

Tammy, it sounds like you have already put much thought and consideration into all of this. I guess it is just making the final decision and following through. It seems, from what you say, that overall Florida is a better place for everyone.

I really respect kids that stand up to teacher like and parents that teach their children that teacher are to be respected but they are not god. There are many wonderful teacher out there, but there are also some self-serving jerks. I found that even the school nurse was relunctant to help my son with a chronic condition.

Good for you in training her how to deal with people.

 

I too have thyroid issues.   DON'T let the doctors go souly on the TSH levels.   Be sure that they are doing T3, T4, and anti-thyroid testing also each time.  

 

 

I do believe they have done T3 & T4 also. Normally her endo (diabetes) dr
takes care of all of this but this time the RA had the TSH listed on his lab
slip so I just let it ride because it is better to be safe.

Yes, Katie respects everyone but sometimes people do not understand.   
Her new school nurse this year is just being cautious but stressed me a
little because Katies numbers were running very high and sometimes
people will allow this to happen because they will begin to loose weight
as a result. I was getting her lunch numbers from the nurse and
mentioned the high numbers. She had asked me my opinion on the
situation and I said no way because I could see where it was bothering
Katie and how hard she was working on it. Well she went ahead later and
told Katie it was not the right way of loosing weight. Now I do not mind
her concern, but I had said no about mentioning it and the way she went
about it was just accusing Katie, not asking. So of course this made Katie
upset and she has not really felt right since. Then Katie said that the
school nurse asked her a couple of months ago if she was pregnant
because Katie was having stomach pains a lot (when all this RA was
surfacing) and she has very irregular periods. Katie especially got
offended on this one because to be honest she has not even had a
boyfriend or kissed a boy yet. Yes, I AM SOOOOOO LUCKY, it has not hit
yet! She just said she is not ready for the stress that comes with all of
that. I do understand and am proud of her for making her own decisions.

Copyright ArthritisInsight.com