Help?!

[Cass3r]

Hi all, I’m in the process of figuring out what all the symptoms I’m having may be from. My dr seems less than eager to get to the bottom of it. I have had horrible leg pains and lumps. I get rashes that look a bit like hives, joint pain, a strange lump that appears over my ear, extreme itchiness, headaches and dizziness, fatigue, hair loss and recently all my eyelashes are falling out! I’ve never had anxiety or depression but recently have found myself with chest crushing anxiety. I tested positive for ANA but negative for DSDNA.

Also all these things come and go, I can not have a single symptom for weeks/months and then suddenly will have all of them happening.

Does this sound familiar to anyone with SLE? I’m just lost on where to go from here!

[Hidden]

It sounds familiar, except for me, possibly the lumps. I think i go through most of what you’ve mentioned, except the lumps. I have UCTD/Latent Lupus, not full blown. So it’s possible you have lupus, possibly could be another AI, or several AI’s. I think only your doctor can give you a definite diagnosis and it may take awhile. So many of us have gone through a lot of testing, some have had a decade of testing. I wish I could give you a definitive answer, but I’m not a doctor, so I really couldn’t say.

I wish you all the best and I hope they figure things out for you very soon.

[Cass3r in reply to Hidden]

Thank you so much for your response, I feel like I’m on a losing battle with this dr, And they won’t refer me to a specialist.

It’s just frustrating, I feel like no one is really listening to my symptoms.

[Hidden in reply to Cass3r]

That’s awful and frustrating. No way to switch doctors?

[Cass3r in reply to Hidden]

I am going to as soon as the holidays are over!

[Hidden in reply to Cass3r]

Awesome. Best of luck and keep us posted.

[Hidden]

Hi there. To me your symptoms as a collection sound like a familiar autoimmune mix rather than necessarily representing one rheumatic disease such as Lupus.

I have Sjögren’s with Hashimoto’s, Raynaud’s, Erythromelagia, small fibre neuropathy/ SFN and am waiting for a second opinion on whether I have an overlapping CTD or not as dermatology suspect. Alopecia is a common aspect of hypothyrodism and rashes and severe fatigue with muscle pain are very common symptoms Sjögren’s.

I can’t be sure why your GP is reluctant to refer you with these symptoms and a positive ANA. But it could perhaps be because they know that your local rheumatology will simply refuse to see you without one of the specific antibodies for a specific disease.

How rotten is this I know? but sadly it seems to be happening increasingly in many rheumatology clinics and your GP might not be the one at fault - it maybe just that they know this referral would be refused or else that these local rheumies would simply diagnose Fibromyalgia or related - so they are trying to gather enough information to make a case for you?

So the important thing to bear in mind is that around 30% of us can have these autoimmune diseases as Seronegative versions. These can be proven by various tests eg RA can be confirmed by ultrasound , Lupus can be confirmed by skin or kidney biopsy and Sjögren’s can be confirmed by lip biopsy as mine was. Once confirmed they usually call it seronegative and some say this can have a better outcome. But it’s also often less well understood, less easy to diagnose so usually has advanced more than blood positive by the time it’s diagnosed -and it’s often the more slippery less treatable version of these diseases.

With Thyroid autoimmune diseases and other related I’d suggest you always ask for copies of your blood test results, if you don’t already, so you know what they have taken eg full thyroid panel of just TSH. This way you can check whether you might be subclinical - which often goes ignored or else under treated.

If you can find something in your blood test results, as well as ANA - to explain at least some of your symptoms - then I think you should tell your GP that you are aware that autoimmune diseases can present in a whole host of ways and you would like seronegative excluding properly please by ultrasound, biopsy - whatever.

Best of luck and happy Christmas and New Year.

[Cass3r in reply to Hidden]

Thank you so much, I’ve never had to be an advocate for myself but with the info you gave me, I feel much more confident pushing the issue!

[Cass3r]

Thank you, I will try to see if there are some foods that are making it worse!

[Putloo]

Hey.... Good to hear about your positive... That's nice. Seems that you are a recent member of the group. Mind if I ask you how long have you been living with Lupus? And what age are you?

[Putloo]

Very much similar except the lumps. I got diagnosed late (SLE-vesculities) . By that time almost 20-25% functionality of my kidneys were totally lost, which is irreversible. So, would suggest you to get the confirmation ASAP. Run for this with all your speed. No matter if it requires u to consult as many consultants required.

All the best

[Cass3r in reply to Putloo]

Thank you so much, knowing that there are other people who are diagnosed and experience the same things I am, helps me to push for an answer!

My dr did refer me to a rheumatologist, come first of the year I’ll have an appointment!