Struggling to get a diagnosis!

Hi. Ok. You don't need a neuro or an endo....they just don't diagnose this illness. And your gp can't. Where in the eorld are you? Are you UK based?

I struggled for years for diagnosis (not Lupus but Behcet's). You would be better to see a rheumatologist or an immunologist.

Let me know where you are based and I could perhaps suggest somewhere you could be seen where they know how to diagnose these conditions. X

It sounds as if you are presenting with symptoms of Polymialgia Rheumatica..PMR...this is diagnosed by an ESR test..Erythrocite Sedimentation Rate Test which it sounds as if your doc has had carried out.

What is the pain like when you get up? Is it severe on getting up but then subsides a little while after but the pain remains but not as severe....

I ask these because i was diagnosed with PMR...and rosecea....and i had the same symptoms as you are presenting and was diagnosed by a Rheumatologist who i still see for checkups as PMR can lead to Temporal Arteritis which affects the arteries in the temporal area of your head ...

I do hope you get a diagnosis soon.....best wishes...

I have a positive ANA and I do not have lupus...my point is that many diseases tick a box or two in common. It is rather like being a sluth...rarely is diagnosis a nice black and white box.

Perhaps you will consider a diary...date, then morning noon night, symptoms, which joints, treatment your tried, specisl notes such as, I fell down two steps or it poured rain all day.

Myself and others in our discussion group will be your support.

hugs

I have a positive ANA and I do not have lupus...my point is that many diseases tick a box or two in common. It is rather like being a sluth...rarely is diagnosis a nice black and white box.

Perhaps you will consider a diary...date, then morning noon night, symptoms, which joints, treatment your tried, specisl notes such as, I fell down two steps or it poured rain all day.

Myself and others in our discussion group will be your support.

hugs

Hi. I feel for you. I am glad the neuro tests have come out ok. Unfortunately this being passed from pillar to post happens quite a bit. You are not alone! Best thing to do is persevere I am afraid, but you do get alot of support on here. I am nearly four years down the line from SLE diagnosis but probably 6 maybe more years since my symptoms started. I hope you don't have lupus and it is something else that is more easily treatable, as it is difficult to get on the right treatment, I am still trying. Having said that, I know there are people who have successfully got on the right treatment and they are leading relatively normal lives. The fatigue can only really be sorted by pacing yourself ( easier said than done!) and not setting yourself unrealistic targets. My joint and muscle pains eventually settled by ALOT of stretching and then regular gentle stretches daily. If I stay in one position too long or do too much, I pay for it the next day and day after! I can't do proper yoga as my joints are a bit poor, but the principles of it are useful. I have flare ups which result in them giving me steroids for a short while, and I know some people have 4-6 monthly depomedrol/kenalog injections. A diary is a good idea as some foods/drink can make symptoms worse, so definitely do that. When I have a flare my skin goes crackers and I swell up and then dry up like a desert, shedding all over. I tried all the precription creams but found that a decent shea butter one is just as good and doesn't smell like a hospital. I have positive ANA and whatever else marker they use but even when I am swollen up, joints immovable and clearly poorly, my other inflammatory markers are normal. Just don't get too het up on the blood tests, try the stretches and diet approach (pineapple, cranberry juice and veg helps me, some people say turmeric is good as well) until the doctors decide what they want to do! Good luck

Has your doc arrsnged a anti-dsDNA blood test this is the definitive test for lupus...if you have not had this test request your doc to arrange this test for you so you can be sure about what is going on with you......best wishes...