lupus or not

[anbuma]

if I have scalp condition (follicular something?),butterfly rash on face,rash on hands and legs and nasal sores-would not link them all to lupus?my dr said today they could be a number of things -so why not refer me to a dermatologist and let them make a diagnosis.

[SmilingToots]

Mmmmmm. I had a battle on my hands to reach my lupus diagnosis. Nasal sore warns me of a lupus flare. Pre diagnosis my GP tried to tell me my wee lumps on hand were warts and refused to listen to my belief that I had lupus and that they were lupus lumps. I ended up putting in writing my wish to be referred to a rheumatologist which worked. You say your doc said your symptoms could be due to a number of things! .... Well, that is the mimicking nature of lupus! Maybe request a referral so you can either confirm or eliminate lupus. Good luck.

[anbuma in reply to SmilingToots]

hi have being arguing with drs since 2011 regarding symptoms and its more than fibro.everythign was not too bad up until sept 2011 when got pain and pressure in ribs.told inflammation.nasal sores fro a year before referral to ENT who told me my nose was NOT swollen and that the "bruising"around my eyes was nothing and in the letter to my gp all it said was "its not sinuses".the rheumatologist was the same -dismissing symptoms and only considering blood test-and DR told me it snormal.then there are sero negative results as my original gp told me that and someone else here said sero negative lupus .I have lumps on my hands at the bases of my fingers and never given a diagnosis fro that either-putting everything down to fibro even with non fibro symptoms.MY Ca125 (for ovarian cacner )has been raised tho not excessive -not considered.have again written to my dr and this time to practice manager to get them to take me seriously btu obviously they are not at moment and then I am goingto email PALS later today

[kazp]

It seems that if there is any rash on face its always going to be lupus! it could be just a rash - There are a variety rashes that can mimic the butterfly. Rosacea is the most common to differentiate. There are ways to tell to a point.

Maybe this - Fibromyalgia - NOT TO ALARM YOU - info only Fibromyalgia is a fairly common long-term (chronic) condition that causes widespread muscular pain. It’s thought that as many as 1 person in every 25 may suffer from it. More women than men are affected and the condition varies a great deal from one person to another and from day to day.

Fibromyalgia isn't inflammatory or degenerative so it won’t cause permanent damage to your muscles, bones or joints. It can have a major impact on your quality of life, but it’s not life threatening or progressive.

- See more at: arthritisresearchuk.org/

DONT TAKE IT ALL AS IS THOUGH GO TO THE DOC AND ASK FOR TESTS, TAKE SOMEONE WITH YOU AS WELL FOR SUPPORT.

[anbuma in reply to kazp]

I hav efibro diagnosed in 2005 btu skin rashes are not a symptom?

[Foss]

Hi Anbuna I have, lupus, Hughes, Sjgrogrens, Raynauds and vasculitis which all began with a scalp condition Folliculitis Decalvans, so be watchful. I am told repeatedly that although F D is an autoimmune disease it is not linked in any way with lupus or any of the other delights.

I do see a dermatologist at Guys and if your scalp condition is bad please think about insisting you see a derm. Have you lost any hair ?

[anbuma in reply to Foss]

I recently asked my dr fro referrals to a dermatologist and back to ENT and rheumy no response.i have lost hair but only on my eyebrows (last year and not given a reason for -dr said not a thyroid problem)and last week I noticed my armpit hair has not grown back after removal.told alopecia btu not why.

[knitter13]

Hi

I have seen dermo and had biopsies, also seen a dental specialist and had another biopsy on inside of my lower lip ( which has left me with no feeling in my lip) all with no conclusive diagnosis. My rash is like bruising, sort of purpley red. Not itchy but spreading like wildfire. Groin and down legs and back of knees. Armpits, down arms etc etc. I feel I will soon be this colour all over!!. Now on my face.

Very very dry mouth,sore eyes aching legs, useless hands but Dr just says medicine is not an exact science.I dont see rheumy again for months. I get so frustrated. I am on hydroxychloroquine but cannot feel a difference yet.

[vonda]

I have sle lupus have all the symptoms it took the docs almost a year to diagnose me with lupus. They spent that year testing an checking for other disease like cancer. It was the scariest year of my life not knowing what was wrong with me. I lost my hair, i have the butterfly rash, i had lil like bump rashes over my chest and back, my feet an hands hurted so bad i couldnt walk r use my hands, weight loss. I understand why the doc want to semd you else where but why not go ahead and do test in case the dermatologist have a clue they mostly do skin conditions. I had a derm come up to me on the street an told me come see him b/c he thought he knew my diagnosis just by looking, but he was wrong. I wish you the best and hope you get better by finding the root of the problem so the other problems will fade away!.(PURPLE)

[TomWillingham]

Lupus is very hard to accurately diagnose. I have it and sometimes my blood markers are positive and sometimes negative. You need to see s rheumatologist to go over your symptoms, examine you and run all of the appropriate lab tests. I saw well over a dozen specialists over 12 years to be diagnosed. Many of the docs I saw went to their favorite line when they couldn't figure out what was wrong: "It's all in your head."