I’m not sure if I’m posting in the right place but I googled and lupus came up.
I’ve had various symptoms for a long time mainly feeling exhausted/tired that has got worse, I feel so body tired that just holding my arms up to do something is hard. Digestive symptoms, weak feeling in arms, mouth sores, some joint pain and I basically feel like I’m coming down with something all the time but nothing materialises.
I do have endometriosis but don’t believe all these symptoms are down to that. I finally plucked up the courage to speak to my gp and she ordered blood tests, full blood count, ANA, Rhf and Ds dna. The ANA has come back as weak positive homogenous? All these bloods were sent at the same time but I haven’t had the RHf or ds dna yet, does anyone know why there’s a delay or how long it will take?
I need to speak to my gp but I don’t know what I’m dealing with here, is it nothing or something that I need to push for more tests etc?
sorry for all the questions, I’m just so sick of feeling like this and kind of feel that any answer to my issues would be better than being told I’m imagining it or it’s anxiety or something x
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Amber83
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Hi Amber, Im so sorry to hear youve been going through this it is the worst :(. I completely relate to that debilitating fatigue that makes you feel youre dragging yourself through each day. Well done for plucking up the courage to ask for more tests - sometimes when you already have a diagnosis, drs just put down any symptoms down to that like in your case the endometriosis but sometimes it is something else.
dsDNA and ANA tend to be the most indicative of lupus in terms of blood test, with the ANA one being the most accurate. I am not sure what it means if it is weak but I was told and I also learnt in med school that dsDNA can be positive and not lupus but usually if ANA is pos it is lupus. Maybe wait for the other results and they can put together a clinical picture. If I were you I would ask for a rheumatology referral as they are the only ones who can diagnose it and prescribe the right medication. If you can afford it, I would even go private as the wait times are soooo long under nhs - but i understand this is not the most ideal nor realistic method. I dont think theres a delay in blood results though, mine took ages as well - just keep chasing it up with your gp. Once they have a better picture they may do tests such as the C3/4 and some other antibody tests.
This website is also a good one for understanding whether the symptoms you have line up with lupus and whether it fits the criteria:
Thank you for your reply. Yes for me the fatigue is the worst thing, my other symptoms aren’t nice but feel like I can find coping mechanisms for them.
Thank you for sharing all that info too, it’s so nice to hear from someone who can relate.
I have a feeling the Gp will say to wait for the other results so I’ll wait for them to contact me. I have my hospital account linked to the health app on my phone, any blood results seem to hit that before my Gp.
Hopefully the ds dna results come through soon. I’m happy to see a private rheumatologist if I need to. So we’ll see what happens. Xxxx
Sorry to hear that dear Amber. There’s an interesting article in The Foundation of America website. The article is entitled ‘ Help us solve the cruel mystery Lupus. ‘
Doctors tell us to stay away from Google but it is hard to stay away when a specific test comes back positive. It sounds as if you are pretty debilitated with possibly the beginning stages of autoimmune disease. Your GP deserves a lot of credit for picking up on your profound fatigue and other symptoms and doing intitial testing.
These tests can take a while. They are more involved than the basic blood tests we usually have. Without seeing the rest of the tests there is not much your doctor can say. When he gets the results - hope they will be back in a week or so - that will help them to start painting a picture. Did your doctor see the mouth ulcers? That is certainly a significant lupus sign if they were able to diagnose the type of ulcer it was. People here who get ulcers could describe them to you. I get regular canker sores and can only tell you what are not lupus ulcers.
Do you have any rashes? Are you taking your temperature? Certainly understand your feeling that you are always coming down with something and that arm weakness.
So I get what I think are canker sores all over my tongue rather than “ulcers” and I don’t really get rashes. I get facial flushing over my nose and cheeks a lot but again I wouldn’t describe it as a rash. X
I hope the doctor saw the sores on your tongue. I am sure you told him if this was not usual for you. Do take photos.
Rashes can be tricky unless a dermatologist is looking at it. Feel free to post it. Rosacea is the rash most commonly confused with lupus. But people can have both. Does your rash worse when you get the flu-like feeling?
This how my tongue goes, this seems to happen after or around the times I feel like I have the flu, it wasn’t on my tongue when I saw the doctor so she hasn’t seen it. The flushed nose and cheeks seem to happen around the same time but particularly in the evening after I’ve eaten 🤷🏻♀️
Those don’t look anything like simple canker sores that healthy people get. Did you show these photos to the doctor? You may need to see a dermatologist. I bet someone on the forum will have experienced something similar.
Remember to take your temperature often and particularly during an increase in symptoms. Even low grades fevers are significant.
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