looking for answers

[patmackfin]

hello,

I'm new here,I was diagnosed with b12 deficiency in march.I am being treated now.The doctor ignored these blood tests.when I google them ,all that comes up is Lupus.I am quite worried.Can anyone help me figure out what is going on with my body? thanks so much.

[lupus-support1 Administrator]

Welcome to LUpus Patients Understanding & Support (LUPUS) at HealthUnlocked.

Systemic lupus erythematosus is a difficult autoimmune disease to diagnose. Blood tests alone do not necessarily diagnose lupus. It is also the case that some people have a positive ANA, but do NOT have lupus and are symptom free. There is also the problem of laboratory testing and there can be differences between laboratories. This is a very complex process. The most important part will be your symptoms and clinical history.

Many doctors cannot diagnose lupus and usually if lupus is suspected, it is advisable to see a lupus specialists. Not all rheumatologists are expert in lupus and some have never seen or treated a patient with lupus. If you are in the UK and if your doctor is considering lupus, then I would recommend Dr David D'Cruz at St Thomas' Hospital Lupus Clinic, London. However, unless you have specific symptoms or if you only have the blood tests, this may not lead to a conclusion regarding lupus - and perhaps this is what your doctor is saying. In any event, my advice is to speak with your own doctor and not rely on the internet. Only your own doctor can make a diagnosis.

There is a great deal of information at the LuPUS Message Board, particularly in the Diagnosis section where you can find information about the ANA tests. There is also an excellent paper written by Dr Graham RV Hughes entitled, "The St Thomas' Hospital 'Alternative Criteria'" which was written to help non-specialist doctors in looking for lupus.

See: lupus-support.org/LuPUSMB/i...

At the LuPUS Message Board you can also post questions and talk to other people. Registration is FREE and we offer free information and free online psychological support. We specialise in psychological support with our own counsellor/psychotherapist available.

By becoming a Member, you will have access to the private forums and because they are private, only Members have access and even bots and search engines are forbidden.

When you register, please use the following format for entering your date of birth: nn-nn-nnnn where n=number. Please use the "-" separator and not "/".

Finally, please go to: lupus-support.org/LuPUSMB and Sign Up.

I look forward to talking with you more!

Sometimes we need to talk to people who understand and who are not family or friends.

With good wishes!

Ros

Disclaimer: No attempt is made to diagnose or to make any medical judgement. You are advised to seek the advice from your own physician. LUpus Patients Understanding & Support (LUPUS) is not a substitute for your own doctor.

[patmackfin in reply to lupus-support1]

Hi Ros,

I have been searching for answers for about 4 years as to what is going on with me.

I had disc surgery (microdiscectomy)in Oct 2012,afterwards I was a little better,but never was fully back to health.I could never sleep on my back again without severe pain waking me,leading to insomnia,constipation,later came headaches,neck pain,exhaustion,tingling and numbness in my fingers and sometimes feet.I was picking up every virus going around too.

I has palpitations,breathlessness,dizziness and anxiety too.

when my blood tests came back in Feb 2015 with a b12 level of 174 we found our answer.I have been getting monthly b12 shots now and inject weekly myself in between.I recently saw a hematologist who said she strongly doubted that all my symptoms were attributable to b12 deficiency,even though they have been helped a lot by them( 80%)

No doctor has even discussed these Antibody levels with me.

I will bring these blood tests up with the doctor again.In the meantime do you think my symptoms could be attributable to Lupus.BTW my bloods were taken in february when I went to the doctor sick with a rash all over my torso which lasted for 2 months.(he diagnosed mycoplasma pneumonia at the time).I has this rash again when I came back from a holiday abroad it lasted 6 weeks the second time.

I don't know if any of this means anything.I have had a terrible time with doctors lately.

Thanks SO very much for your input. Sorry this is so long .

Patricia

[lupus-support1 Administrator in reply to patmackfin]

Dear Patricia,

There is no need to apologise whatsoever. I understand how difficult, anxious, frustrating (and painful) all of this can feel. It is understandable you want to know what is going on and you have every right to seek help. I can also understand the difficulty in trying to do this. Many patients describe how they are made to feel as if they are just making a fuss,or that it is "all in the mind" which makes matters worse.

I must stress that I am not a medical doctor and even if I were, no one can diagnose you without a clinical history and a clinical examination.

I think it is very important that you feel you can talk to someone in a safe place, to be with you (at least psychologically) while you have to go through a long process of finding out what is going on in your body.

I am sorry that I am not familiar with lupus specialists in your area, but I would try and find out yourself as this is the most important for you. You might find the Lupus Ireland (lupus.ie/) helpful. My organisation LUpus Patients Understanding & Support (LUPUS) specialises in psychological support, as well as free information and we have our inhouse psychotherapist/counsellor should you need to talk.

Whatever you decide, know that you can always contact me: roz [at] [lupus-support] [dot] [org] [dot] [uk]

With good wishes,

Ros

[patmackfin]

Thanks so much Ros,

I will look into the Lupus Ireland website.What you guys do is just brilliant,Thanks again

[milkwoman]

Without further detailed lab testing by a rheumatologist there is no way of knowing which autoantibodies you are testing positive for (the ANA is a generic test covering a variety of autoantibodies). Could be lupus, could be Sjogren's, etc.

When I got my first positive ANA (by a hematologist who brushed off the results saying many people test positive and refused to investigate further), I asked my GP to test for the specific autoantibodies listed on the ANA. Luckily he did and those results were enough to send me to a rheumatologist for complete testing, which resulted in a lupus diagnosis with a secondary of Sjogren's.

Had I not pushed for further testing, I never would have got diagnosed last summer and started treatment. Everyone kept telling me I was "fine" yet I knew I was NOT.

Please pursue further testing.

Hugs.