Hello! I am new here and also new to Lupus (possibly).
I am 22 years old and have had hypothyroid disease since around 14 years old. Never had any problems until recently. I noticed my glands were swollen and very tender. I am having bouts of nausea and vomiting, becoming very flushed on my cheeks randomly (and when that happens i get a slight fever), light hair loss (strands not patches and mainly in the shower), cold fingers and toes constantly, mouth sores (mainly tongue), inside of nose is super dry and sometimes bleeds (never happened before), weight gain, and stiff and painful back & especially knees, jaw pain and popping, trouble sleeping. Also, I have a history of migranes and had my gallbladder taken out a few months ago.
So i went to see my Dr. initially thinking my thyroid was out of whack and after testing it, it was PERFECT! he told me i was showing signs of lupus. I didnt really know much about it other than your hair falls out! . I got all the blood tests to check for lupus and RA and all of those things and they are all neg but before he knew they were neg. he was strongly thinking lupus!! now he is telling me its anxeity?! I am never really anxious...at all. I am a generally happy person!
I would like to get some support anod maybe hear your thoughts on my symptoms and if they sound like anthing you've experienced.
You need to see a rheumatologist who specialises in auto immune diseases (lupus)
I had 3 years of being made to feel like a hypochondriac. I am a retired nurse and did lots of research
I am sero negative-that means the ANA(test for lupus) is negative 90% of lupus patients are positive which means 10% are negative. Its a hard battle but you have to be persistant. It does sound like you have symptoms of sjogrens as well. If you are in UK then St Thomas Hospital is the place to go or the london lupus clinic if you can pay, elsewhere I cannot help, but mine started with hypothyroidism.I also had jaw problems ans still have insomnia, I hope you get sorted soon but don't let the dr label you as anxious because if there was nothing wrong you wouldn't be anxious.
Please get a second opinion from an expert.
GeorgieHaz, just wanted to say HI. I do understand your problem getting a Dx when you're ANA-negative. I was too. Horrible things said & done to me (in US, not UK) over decades! Pain started at age 13. GI & urinary problems, headaches, etc. in my 20's. Migraines & neuro problems in my 30's. Rashes were last, weirdly. Were you positive for anti-Ro and anti-La? (Just curious.)
I hope this finds you stable and doing MUCH better! Best wishes, Vee
I have had many problems with medication, Plaquenil made me faint, Mepacrine made me constantly sick. I tried Methotrexate but was so drowsy on it I could not function. I have been taking steroids for 8 years, I am only on 5mg Prednisolone at present. My lupus has been behaving but recently I have started flaring and not been as good. I go to London in three weeks to the Lupus clinic so I hope they will try something else. I am feeling so tired and everything hurts, having anaemia doesn't help.
I also have APS, Sjogrens, Hypothyroidism, High Blood Pressure and Cholesterol, recently become Gluten/|Wheat Intolerant. The list gets long.
No I have no antibodies at all it took the big man Professor Graham Hughes 20 minutes to diagnose me with SLE, APS, Sjogrens, and later Fibromyalgia on symptoms and medical history. I have cerebral APS and I am sure I would have had a stroke if I hadn't been started on warfarin as my head pains were so bad. Without doing research and finding the lupus clinic in London and having a fantastic supportive GP I would have lost my job, pension and be left in the wilderness!!! I would urge everybody to be persistant, it could save your life.
I was a Nurse for 33 years and they actually told me I had read myself into a diagnosis, by this time I had permanent Haematuria(blood in urine) high blood pressure, cholesterol, Hypothyroidism, raised ESR and CRP, the fact that I couldn't get out of a chair and my hubby had to push me up the stairs seemed irrelevant to the first 4 Rheumatologists I saw.
I do have a good Haematologist locally but Rheumatologists seem to be on another planet when lupus is involved. Thats why I do the 100+ miles to London to go to the lupus clinic.
Georgie, I've heard of Dr. Hughes and would surely drive the long distance you're driving for a specialist of his caliber. I'm sorry you've had such trouble zeroing in on effective meds. Good luck with your upcoming appt. Hope you stay in touch. Best wishes, Vee
Will do. Having a rough time at present as anaemic, very low ferratin level seeing consultant for endoscopy(really looking forward to it!!!!) NOT
Having pains in stomach Gp thinks I have an ulcer--just what I need as if us lupies haven't got enough. Will let you know how it goes.