Need Help

Hello @britb88, Welcome to Connect. Sorry to hear you have to wait until December to see a rheumatologist. I'm sure that you are not alone and there are others here on Connect with similar symptoms. While you wait for others to respond, you might want to scan through the discussions and comments by members on Lupus. Here is a link to the different discussions and member comments - https://connect.mayoclinic.org/search/discussions/?search=could%20this%20be%20lupus.

The Lupus Foundation of America has some information that might be helpful. I did see that not everyone with Lupus are sensitive to sunlight. - https://www.lupus.org/resources/common-symptoms-of-lupus.

Are you able to get on a waiting list for your appointment with the rheumatologist in case there are cancellations?

SOOOO sorry 4 all ur goin thru! and dx of lupus is diff. I had 2 wait 4 mos 2 see doc seeing now. and being passed from one doc 2 other I know is frustrating. I hope when u finally get 2 appt in Dec it goes well. rootin 4 ya

@britb88 Welcome to Mayo Clinic Connect, I echo what @johnbishop said. Ask to be placed on a cancellation list, and grab any appointment you can! If there is more than one rheumatologist in the practice, perhaps you can be on a cancellation list for both of them?

Lupus is a sneaky condition, and they have called it a "constellation" disease. I was diagnosed in 1988, and went through many different tests before getting to the end. My symptoms may not be yours, and vice versa. Our bodies are indeed miracle machines, and how they respond to different stimuli is astounding. For me, the sensitivity to sunlight, joint pain, mottled skin, fatigue and headaches are common, but I also have other health issues. So, is it my Lupus kicking up or something else? That is always a question I ask myself. I know you are frustrated.

Keeping a journal of your symptoms might help you understand when they are triggered, and show you and the doctors a pattern. Can you do that? And a side benefit is that you might understand even better what is going on, and ease the frustration.
Ginger

Yes on waiting list I've read everything I can on lupus alot of it sounds like my symptoms but then again some don't. Sorry for asking this i should of looked through discussions I just wasn't sure where to post exactly since I'm not sure that's what I'm dealing with.

Yes I've also been taking pictures although you can't see much from them dang cameras. I'm not sure what symptoms are related and what isn't do I put down everything that's ever been wrong with me or just recent stuff?

@britb88 If I was in your shoes, this is what I would do: Write down your known maladies, when they started, what treatment you were on, where you are at now with them. As to the symptoms you are experiencing recently, write down what you can recall like when they started to be bad enough to notice, time of day/activity/environment/stress levels, any thing you feel might be a "trigger". The idea is to find common things, parallels to connect the dots.
Ginger

Sounds like me, except for the stones. But no on Lupus. My ana was "small" but positive, and most likely cuz I have Raynaud's Syndrome...red, cold, painful yet numb feet (always) and get cold, numb hands easily....all the rest is , I know, symptoms of Lupus, but also Parkinson's (that's mine), Huntington's, and a bunch of other neurological disorders. Have you seen a neurologist with your full list of symptoms in hand? They'll probably do tests, but tend NOT to test for Parkinson's or for Lupus. A friend who's had Lupus for years and had L in the family finally made his GP send him to a Mayo clinic to confirm Lupus, cuz his hospital said 'Men didn't get Lupus'. (His uncle's COD was Lupus) and only then would his hospital treat him. If you can't do this, why don't you just go to the ER for the anemia, bring your lists as well, of course, and see if they'll treat you or send a referral to a specialist. Consider a referral from GP or PCP to a neurologist.

Thank you and no I've been to bunch of specialists but not a neurologist. I have went to the er they just treat me for rash or kidneys whatever I go in for that's it. With rash they ask if I've been tested for lupus and then they send me on my way. That's all I ever get is sent to someone else. Also the stones were new to me also have kidney issues but first time getting stones I don't recommend them lol

Thank you ill work on getting this done.

britb88, it was the ER that sent me to a neurologist (after a seizure), and a gp who sent me to a neurologist after my I-dunno what..... anyway, lots of our symptoms sound neurological, so you might want to ask your Primary Care if he/she wants to send you to a neurologist for an evaluaztion. Tat may just get you sent to yet another different kind of Specialist and hopefully some answers. Answers are tough to come by these days. Good luck. 👍💕