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hello,im not sure what to do-im afraid this will be long because its been complicated-apologies in advance.

6 years ago i was diagnosed with fibromyalgia with all the muscle/joint aches and pains. i was constantly tired no matter how much i slept. During this time my blood only revealed a very low white blood cell count which continued for a while and then miraculously recovered-it has dropped low again a few times since then.Over the years i developed chronic nausea, acid reflux, IBS,migraines, strange low grade fevers, chronic swollen lymph nodes- sometimes theyd go up and down and other times theyd stay for ages.i get small nose sores but theyre painful so i dont no if its just from a dry nose. i also developed anemia for a while and then subclinical hypothroidism (right on the border of low)-i was very symptomatic with the fatigue,depression, weight gain and my skin and scalp was like a desert. i went on thyroxine for a year and then came off it and my thyroid levels have miraculously stayed up.

I also have carpal tunnel syndrome in both hands ( i am told this is extremley unusual for a 25 year old)-however the pain,numbness and tingling is not just in my wrists it goes to the top of my arms and i can feel the same thing in my legs as well. i also get (raynauds)blue/purple feet and knees in the cold but my hands arent as bad, and its embarrassing but i get it extremley badly in the nipple area (it is excruciating!)

3 years ago i developed a rash on my face on the bridge of my nose, forehead, my chest and hands over the joints. It then spread to my knees and elbows. The rash is photosensitive. I have been tested for everything from herpes, AIDS, toxoplasmosis, Lyme disease to all the anti-Ro antibodies i can think of and ANA: all are negative. I did have 2 skin biopsies which came back saying that the best thing they could fit it to was jessners Lymphocytic infiltrate -according to the dermatologist within the medical communtiy there is an ongoing debate that jessners may actually be part of the Lupus spectrum.

I have however had regular elevated CPK and once an elevated ESR, low calcium and vit D and again twice a low white cell count. the doctors first suspected Dermatomyositis, then it was changed to Lupus. I never got a firm diagnosis but they felt my symptoms best fitted this and that it was probably mild (although of course it never feels mild). I was put on 400mg plaquenil thinking this was just for my skin. A surprising side effect was that the muscle and joint pains decreased by about 80% and i could manage without popping painkillers all the time for the first time in years, i no longer have swollen lymph nodes, nausea and i very rarley get low grade fevers that suddenly come on. I am less tired and for the first year i was on plaquenil the carpel tunnel was pretty much gone. the rash also diminished to barley noticable and id only have the odd mild flare. I started to get my life back.

about a year ago the rash began to pick up again, this time my hands were spared for the most part but my chest, forearms and stomach are the worst. Ive also gotten it on my ankle joints, knees and elbows. Last year it all got very bad and my CPK and ESR went high again, the pain etc was back so they put my on a short course of predisone and within two weeks my skin was cleared and the pain had gone way down. It was suggested that they add something to the plaquenil. however i had to move so we left it.

i had to change docs and have seen 3 since all with different ideas. the first thought it wasnt lupus but instead dermatomyositis, also he was convinced something was up with my thyroid-i had tests and a scan- all was normal. I was sent to a dermatomyositis specialist who said its definatley not that and he doesnt think its lupus or even connective tissue disease (says my bloodwork is irrelevant) but he thinks its ...HIVES?? i called my old doc and he thinks that is rubbish. So i went to a dermatologist and they are now saying Polymorphic light eruption (basically an allergy to the sun which means the skin erupts in a rash on areas exposed to the sun) and that my history of muscle/joint pain etc is just coincidence.

They told me to go and look it up which i did. My issue is that i really do not seem to fit PLE. The big issue being that although this rash is triggered by the sun it also appears without the sun whenever it feels like it-like in the middle of winter in areas that have not seen sunlight since i was a child (ie my stomach). The rash also looks different sometimes -it can come up in bumpy papules that are very itchy, or it can be in strange ring shapes with a red border and lighter centre, other times its thick plaques that look like theyre tight or sunburnt. It is generally very itchy and is sometimes visably swollen and very angry looking. when i saw pictures of PLE i didnt fit very well apart from i get a bumpy rash sometimes and everywhere i looked it said that in the summer it is worse and as the summer goes on the rash decreases as the skin becomes desensitized to the sun-but this does not happen to me.

I am worried they will not listen to my other symptoms of pain etc and take me off plaquenil- i have a history mental health issues and have just got my life going again and i couldnt do what im doing now in life if i had pain etc like that again. I have felt the current docs are going backwards-i have had all these tests before and they keep just repeating things, my previous docs had already considered hives, allergies, thyroid etc. I had two good specialists before which i felt really listened to me and they also communicated with each other a lot about my case. My other worry is they were reluctant to do anything involving light therapy in case it triggered bad flares (if i did indeed have lupus). but the new doc wants to do light therapy which will involve going on a sunbed for a short period-im worried theyve got this totally wrong and it will be bad for me.

I am very tired of going to doctors and am becoming very upset after every appointment not knowing what this is. I appreciate that they are trying and mean well but i feel my previous history is being dismissed (i was with previous docs(rheum and Derm) for 2 years and they monitored me regularly). I understand that it may not be lupus and although that would be a good thing it still means im left with these symptoms and no direction in terms of treatment or prognosis. right now i feel they dont know whats going on (they have actually said this before) and are just trying to fit me into a simple box even though i feel i dont fit.i was wondering if anyone has any advice or has been in this situation with docs-any opinions on the sunbed idea??

Again-sorry this was long. Thanks
Welcome to the boards, and I sure am sorry you have gotten such a runaround with no diagnosis and now bad treatment advice (the light therapy). Here's my take on your situation-I am not a Dr. but do have lupus and RA, and know a fair amount about these things. You have what seems to me to be classic lupus symptoms, with a hint of possible Hashimoto's autoimmune thyroid issues. Classic for lupus are the nasal ulcers that hurt, joint pains, muscle aches, low white counts, sun induced rashes and other rashes, Raynaud's, carpal tunnel, high sed rate at times, and even the high CPK can occur in lupus (lupus myositis). Fevers and enlarged lymph nodes and anemia fit lupus also. The thing that is probably throwing everyone off is the negative ANA but 4-5% of lupus sufferers have a negative ANA. Here's some suggestions: DO NOT do light therapy-I think it will cause a serious flare, both skin and systemic symptoms. Get to a new rheum, perhaps one in your local unvisersity setting. Get a new skin biopsy of one of your rashes, but insist on immunofluorescent studies to look for a "lupus band" of immune deposits in the skin. Ask for anti-dsDNA, anti-Smith, anti-Ro (SSA) and anti-RNP antibodies. The first 3 are for lupus and the last is for Mixed connective tissue disease. Also low C3&4 in serum can fit. Be sure to get a urine test to look for protein, blood and casts in urine. Finally, ask for anti-thyroid antibodies to see if any of this fatigue is thyroid related and can be treated to boost your energy. Don't let anyone take you off Placquenil, and ask for possible Methotrexate or Arava if you need more relief. They are second line drugs for lupus. If you look at the top of the lupus board here you will find 2 sections that deal with criteria for lupus. You can use that as a checklist to show your new Dr., along with all your previous test results. Pictures of rashes to show the rheum and derm Drs are helpful too, since they tend to come and go. Likewise for butterfly rashes and Raynaud's. Good luck. I can't believe there is so much controversy in your case. If you can get these other tests done, I feel certain something will show up to convince your Drs of what this is. Please keep posting-you'll find help here and emotional support from others who have been down this path before!





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