[karen.w.]

Hi everyone

Forgive me if this is posted in the wrong section,I am not thinking straight at the moment :worried: & I apologise in advance for the long post.

I spoke to my gp earlier regarding my daughters blood tests results & now I'm really worried :worried: & need some advice please?

the blood tests were for lupus,APS (my sister has aps) & rheumatoid arthritis and were requested by our gp because as I have mentioned to some of you, I have been concerned about my daughter because for the last few months she's been experiencing knee pain,headaches,dizziness and also her hands & feet are turning blue & red quite often.
our gp blamed her symptoms on a virus at first but then decided to do some tests.



so,my gp has just told me that her results were fine (thank goodness)
however he said that some antibodies have shown up that suggest autoimmune!
he reassured me that they're nothing to worry about & they are not connected to the symptoms she is having at the moment although they do suggest that she WILL develop an autoimmune disease in the future! :sad:

I asked if this can be quite common in rsults & he said no he had never seen these type of results before??!!


as you can imagine I am very confused and I don't know what to think now??
they don't normally give copies of blood results but I'm going to ring later when they re-open & request a copy.

has anyone got any advice or suggestions please?thank you so much I would really appreciate it :grhug:
I hope this makes sense

luv karen x

 

[greenhaggis]

Karen,

If its not one thing it always seem to be another! Hows your daughter coping? Sorry I have not got any advice to offer, although perhaps someone else will!

I think you are right to get hold of the test results even if you have to apply and then pay for them!

Let us know how things are!

Love Lesley

 

[Zoi]

((((((((((((Karen))))))))))))) :hugbetter:

I know this is easier said than done, and I can't even imagine how worried you must be for your daughter at the moment, but try not to panic yet...

Now I don't understand exactly what the tests were, but wanted to say that my rheumy has warned my mum and told me to warn my brother too that any one of my first degree relatives may have an elevated ANA and/or other positive autoantibodies without having any autoimmune disorder, simply because I have an autoimmune disorder... That certainly is the case with my mum; she's got an elevated ana, but truly, really no autoimmune disorder to speak of! I'm wondering if that could be the case with your daughter...

You're 100% right I think in wanting to get a copy of her tests and test results; it might also be useful to give your rheumy a call or his nurse and explain the situation so that he could maybe take a look at your daughter's tests as he would know best what might be going on! Would that be possible to do?

Also I don't think there's any test that shows with certainty that someone will develop an autoimmune disorder in the future! I might be wrong about that of course as I'm not a doc, but I've been to my fair share of panic inducing doc appointments to know that doomsday predictions about the future are more often than not, simply not true...

Hang in there Karen...We are all here for you.... :hugbetter:

Sending both you and your daughter loads and loads of hugs and positive thoughts :grouphug2: :grhug: :goodvibes: :goodvibes:

:flowery:

Zoi

 

[karen.w.]

Hi zoi & lesley!

Thank you so much for your kind replies,it means a lot!

what you said makes a lot of sense zoi especially with my sister having aps & it being so closely linked with lupus,it could just be normal to have these antibodies present...maybe that's what he meant but unfortunately didn't explain it properly!

It annoys me that doctors can be so flippant regarding children,they must be aware of how parents worry!
I will definitely give my rheumy a call,that's a good idea, I never thought of that
I am still worried about her symptoms too so would be good to get a second opinion.

I am also baffled as to how he can predict that she will develop an autoimmune disease!It's a very bold statement to make!not to even say it was just a possibility?

lesley I am not going to tell my daughter..she is nearly 13 & personally I don't feel comfortable telling her if it is only a prediction?I worry about the power of the mind & suggestion etc..maybe I'm wrong I don't know but will find out what exactly is going on first.

Thank you both so much for your advice & kind wishes,will update later when I have spoke to my gp again.
:grhug: luv karen x :love2:

 

[Maia]

It's really hard to give advice without knowing what the bloodtests were... and how some were indicating this sort of thing? I've never heard any doctor tell anybody that the tests indicate that you don't have autoimmune disease now, but can predict that you will with any sort of certainty. Never ever heard that before - the tests are not predictive just diagnostic!

Great idea to run this past your rheumatologist, and I would probably ask him to look at these blood tests and recommend your next step of action to take as well. I'm pretty sure you have a right to a copy of those blood tests, I hope you can get them to take to your rheumy and to research the results yourself a little more as well.

I would be just like you too, in not telling my daughter about the results and this prediction of the GP. Mostly because there really isn't a way to predict it as far as I know. I would only tell her if she had it and was diagnosed... and wouldn't want to foster worry in her or that self-fulfilling prophecy to get set in motion!

 

[mysharonna]

Hi Karen,

Sorry you are going through such a worrysome time. I have never heard of a predictability test for autoimmune disorders either, but nowadays technology moves faster than we do! They already have a test to predict if you will have cancer, so who knows if they have developed one for autoimmune probs?

That being said, I think its a great idea to forward the results to your rheumatologist for further review. Here in the states, you have the right to request medical records and such, but I know your medical system is different in the UK. If they dont want to send them to you, maybe you can request they send them directly to rheumy.

I hope you get to the bottom of this soon and can ease your mind. Take care, and let us know what happens. I will keep you and your daughter in my prayers.

Sharon

 

[karen.w.]

Copy Of Tests Results

Hi again

maia thanks so much for your help & advice!and I'm so glad you agree about not telling DD.

I went to the doctors & luckily they let me go in & see him!...completely lost faith in him now though!...to cut a long story short,he didn't have a clue & is now saying that she DOES have an autoimmune disease but it may not develop fully until in the future????????
he rambled on & then admitted he didn't understand them!!!!

I asked if it would be wise for me to speak to my rheumy to which he agreed & as I already have an appointment for thursday he photocopied her results for me to take with along.he also advised me to tell him about the symptoms shes been having.

so these are her results..does anyone understand them at all please?

Autoantibodies:

dsNDA (EIA) NEGATIVE
ENA SCREEN NEGATIVE
(ENA screen includes Ro60,Ro52,La,Sm,RNP,Sc170,Jo-1,CENP-B)
Nuclei HEp2-ANA POSITIVE
(homogeneous pattern)
(speckled pattern)
ANA titre 1:640


thank you so much :grhug: karen x

 

[greenhaggis]

Karen,

It is good that he gave you a copy of the results, but why on earth is he not reffering your daughter to a peadiactric/rheumy specialist. Your Rhuemy obviously may be able to answer questions if willing about your daughter but will he feed back to your GP! He may say that your daughter should be reffered!

My children see GP/specialists for various problems are ready to jump when I am ready to get them tested for any autoimmune problems (and they are males). I must say that they are more responsive than my own specialist.

I agree as in not telling your daughter! I think I would have problems with doing that with one of my children who is only 9 - he is so inquisitve, that nothing gets past him! Luckily my other boys are more laid back and easily pleased!

Good luck!

Love Lesley

 

[Katharine]

Hi Karen :grouphug2:

I have no advice I'm afraid. I'm not that good at blood tests and things but as a mother I do, of course, understand your worry :worried:

I just wanted to send you loads of hugs, you have always been so kind to me and others here on the board!

So, great big bear hugs, warm tender ones and good strengthening ones all winging their way to you,

Katharine

 

[julsie]

Me too,sorry Karen,it's such a worry and I'm sending you big hugs too,:hug:
Julsie

 

[cispence98]

I have gone through some pretty tough situations health wise with my kids (luckily they were short term) but I can understand your worry and concern,
I ALWAYS get a copy of my blood work from every doctor no matter if its normal or not I have every copy (my folder is thick believe me) I only mention this because maybe before your appt you can compare your tests to hers, I know we cant diagnose ourselves but sometimes investigation and knowledge going into the doctor can either be recepted good if the doctor is not intimidated ot negatively if the are offended, I always be information that I find to the doctor I even have faxed copy and pasted information off the internet with my test results so that I can get an answer and show the doctor why I am concerned, because I read this and she will explain the information (as a matter of fact I am fixin to fo that now)
Anyway I wish you luck and best wishes I know its a hard situation and I have thought about the what ifs myself, infact I toldd my 15 1/2 yr old daughter that I need to schedule her appt an have all her blood work done just to make sure we are aware of any thing that may be going on ( Ia m more worried about her thyroid).
I hope you get answers from your doctor and I agree that she should have been sent to see a specialists. Esp if the doctor could not explain or interpret them.
Good luck and best wishes and kind thoughtsosy: :hug:

 

[Joandublin]

Hi Karen

Im really sorry you have this worry and even sorrier you have a bit of a dolt for a GP. Anyway - enough about that.

The good news is that there are no specific autoantibodies which would be pointing towards Lupus, e.g. ds DNA is negative as well as Anti Sm and all of the rest of the ENA (Extractable Nuclear Antigens) were negative. However she does have a fairly high ANA titre which, alongside her symptoms, does need to be investigated and certainly monitored as time goes by in case there are further developments. Im shocked that your GP didnt refer her to an appropriate specialist for proper investigation

With some of the symptoms you mentioned it might possibly be Raynauds Phenomenon which can come along with migraine type headaches as well as the changing colour of the hands you describe. But Karen thats only a pure guess on my part.

Raynauds can be a primary condition and may never progress to anything else. It can also be a secondary condition to another autoimmune disorder and usually blood tests are used to try and identify this. Its all quite complicated Karen, but at the end of the day I feel that your daughter needs to be followed up by a specialist. Im glad you are seeing your Rheumy on Thursday and I hope they can help in this regards.

In the meantime loads of hugs to you and her. The good thing is that at least you have support and information here. You are in a very good position to ensure that she gets the best attention and investigation she deserves.

Let us know how things go on Thursday

Lots of love
Joan:rose:

 

[Maia]

Hi Karen!

The ANA is definitely high enough to be concerning - certainly worthy of referral to rheumatologist when you combine that with a few months of knee joint pain and headaches and possibly Reynauds. It will be interesting to see what your rheumatologist says about the situation - hopefully he will comment and be able to make a recommendation for a pediatric rheumatologist.

All that said, sometimes in children ANA can be positive and then revert back to low levels or negative. Following some vaccinations ANA can rise, and then fall for instance. The same can be true for certain viruses, etc. I think it would be prudent to keep an eye on her, and retest at a later time if her symptoms continue especially.

There is still hope that she's fine though, I certainly hope so. This must be just heartbreaking for you... I can imagine...

(((hugs)))

 

[karen.w.]

:grhug: Thank you so much ladies,I truly appreciate it..I don't know what I would do without you all & this forum.

Sharon,Lesley,Katharine,Julsie & Laura ... thanks so much for your advice, hugs,kind wishes & prayers etc...katharine,I was very emotional after reading your post,I am glad to know that I may of helped in some way,that means a lot to me.
Laura,good luck with your daughters tests,fingers crossed her thyroid is ok.

Joan & Maia .....raynauds crossed my mind too I will google it now,I didn't know it caused headaches too,she also has fainting problems too..thanks so much for your help & kindness I know you both have enough to contend with at the moment!& yes you're right joan thank heavens for this forum!it's funny because after speaking to my hubby today it was here were I came for support...I just pray that it is because of a virus...but it doesn't look too good though :sad:


Ladies I can't thank you all enough...I will let you know how it goes on thursday....I feel so strange part of me is trying to remain positive & part of me is in shock & devastated at even the thought of there being a problem :worried:
......and there are strange thoughts going through my mind,blaming myself for having lupus & worrying that I have focused too much on my illness the last year that maybe in some way I have caused this to happen?if that makes sense..

:grouphug2: and the hugs I have received from everyone today have been very much needed,thank you all so much
lot's of luv karen x

 

[cispence98]

Karen its normal to be worried and upset, BUT DO NOT blame yourself for having lupus, I am always apologizing to my family and my husband tells me - "you didn't ask for this cross to bear" and neither did you, hopefully they will be able to tell you something other than an immune disease or maybe you caught something before it could get worse and start treatment, there actuallu could be a positive as you said fingers crossed!!
I pray and hope all is well did you compare your test results to hers to see if there is any similarities just a suggestion, in the meantime, try to do something that will distract you until the time comes,
I will share a story with you...
My daughter had stomach problems and began losing weight I took her to her pediatrician of 6 yrs and she asked me to leave the room to ask Ciara some questions when I came back in she said Ciara is depressed and needs to see a shrink she is having problems adjusting to your son, OK my son is 2+ yrs old she has adjusted I was mad ANYWAY I said I will take her to a shrink AFTER you run every possible test available. She reluntantly agreed Ciara had an unltra sound done and they found alot of stool in her test, I asked the doctor what this meant nothing she said then after a bunch of other test she called me excited and said she has a unrinary tract infection she should be better after antibiotics, OK she thought she is fixed yeah right I told my ex husband who went with me to this visit that something isn't right I called the texas childrens hospital and made an appt...FOUND OUT Ciara had a bowel obstruction the size of a softball, I was FUMING!! She had to endure some pretty nasty things for an 8 yr old and I called her pediatrician whom I should mention I did personal things for her accts at the bank I worked at ( in terms of higher rates for CD's etc based on begging to the branch manager I figured shes my doctor I want to help her out) I chewed her out I said had I gone to the psych they would never have found out about his and then she would have had bigger problems possibly death from a ruptured intestines and bowels, so you are your childs voice and the doctors don't always know everything if ever in doubt investigate yourself question the doctors they make mistakes and miss things that only the person with them see sometimes, we are only 1 patient compared to the 100's they see so they don't always take the time to look for things.
AND they always blame things on the primary diagnosis and sometimes don't look past the original diagnosis.
I know this is long but I thought I would share a happy ending, I should say Ciara still has to be medicated for the problem and we have to watch it but she is almost 16 and doing well except for somethings that look as though it could be related to thyroid or hormonal she started her period in 4th grade, things are changing in this world I started in 8th grade.
Anyway hope this helps, thinking of you and your family and of course your daughter!!

 

[clairebear!!]

ohh Karen my little matey!! :hugbetter:

i know we spoke yesterday but i didnt realise you were that upset!..obviously you will be tho..duh :doh: im not suprised your heads all over the place at the minute, i cant imagine how you're feelin :cry2:

please dont blame yourself though...its not your fault...its not even your fault that you've got lupus its just one of these things! it will make you feel worse if you blame yourself too, and could end up stressing yourself out too much and making you feel ill and i dont want that!! hehe.

i wish i could help you to feel better but all i can do is send you positive thoughts and really big hugs!! plus you know i'm always here for you whenever ya need a chat..well i hope you know that anyway or i'll be having words!! hehe

take care mate and keep your chin up

Claire xxxxx

ixiedust:

 

[keebler]

(((Karen)))
It is a worry thinking that one of our kids could get lupus.
We would rather go threw it than have our kids.

Talking to your rhumey is a good idea.
:foryou:
Lyn

 

[lin]

Dear Karen, so sorry that these dr's have scared you hun, just wanted to give you a hug, they would have sceard me too, :there: :kiss: hope all will be ok with dd xx


(((((((((((((((Hugs)))))))))))))

 

[karen.w.]

Hi Laura,Claire,Lyn & Lin

Thank you all so much for your kind words!..I have kept busy today rather than sitting here dwelling on it..you're right laura distraction helps!

I feel unwell today due to getting myself into a state so I am trying to be positive & convince myself everything is fine that it's related to a virus can't do any harm until I know more & hopefully that might be the truth!

laura what an awful experience with your daughter :sad: thank goodness that you were so assertive & trusted your instincts!although it can be easier to be more proactive regarding our children,mothers love eh!..I do hope everything turns out ok with your DD,she is lucky to have you for a mum!has she had the tests yet.
I couldn't compare results as I have never had a copy of any of mine,my rheumys secretary said they don't give out copies,even when I offered to pay!

I will let you all know how it goes tomorrow..& I will try not to blame myself,have never done before but feels that way at the moment :sad:

((claire)) please don't worry about yesterday,I wanted to change the subject in chat as I was feeling upset & I felt better when we chatted about other things!sorry I should have explained!

thank you all for the much needed hug's etc & thank you for being there for me & also taking the time to post :grhug:
lot's of luv karen x :love2: