Could this be Lupus? A very long journey...

[London1979]

Hello all!

I've been suffering for 30 or so years with many symptoms.

Since puberty I have suffered with absent seizures, hand shakes, joint pain so bad I can't walk, stiff hands in the mornings (my little fingers get locked and need to be manipulated), stuttering (when I'm not feeling good), rashes on my hands, photo sensitivity, a mild upside down triangle of redness on my cheeks, gastro problems (mainly stabbing pain in the gallbladder/pancreas areas), extreme fatigue, nausea, stomach acid problems, chest pain, laboured breathing and much more.

Also, from puberty, I suffered with really bad gynae issues. Later in life I was diagnosed with adenomyosis (sister of endometriosis), PCOS, PMDD and insulin resistance (from the PCOS). I have since had a hysterectomy and oophorectomy. But since trialing HRT multiple times, I've reacted terribly and had major flareups which can last for weeks.

On the note of flare ups, they can be 2 days or 6 months.

I've had EEGs, ECGs, a brain MRI (which showed some white spotting, which they said was from my seizures, but said it wasn't epilepsy), and 24 hour heart monitor. All of these results came back clear and was essentially told it was in my head and that the next time I feel bad to 'breath in to a brown paper bag'. Gastro told me that they couldn't find anything and to take meds for IBS (it wasn't IBS). I know without a doubt something is wrong.

Test for arthritis, diabetes and thyroid issues have always come back negative.

My mum has 4 autoimmune diseases (not lupus) and when I had my DNA analysed it showed an increased risk of lupus, as well as MS and coeliac disease (although I know that carrying a risk and actually having it are two different things).

I did the bloods of coeliac this week, and in two weeks I'll be getting bloods to test for AMA (getting a blood appointment is very slow where I am).

So this is where I am right now. It would be good to know if anyone else here has symptoms/experience similar to me? I'm scared that again they'll say I'm ok and send me away.

Many thank, Claire

[miccika1]

The ANA test should most probably show if your symptoms are due to the autoimmune condition. What helps your symptoms if any? What happens when ypu go into the sun? Did ANA ever come back negative in the past? Yes ypur symptoms could be some autoimmune condition but also something else. Ypu wi k ow when yoj autoimmune panel comes back. Did you do ANA or the full autoantibody panel? Hope yoj find put soon and get a proper therapy.

[London1979 in reply to miccika1]

Hi! I have an ANA test happening next week Wednesday (sadly couldn't get it any sooner). Thing that help my symptoms include rest, anti inflammatories or codeine for the pain, long hot baths, running my hands under warm water. Sleep doesn't remove my fatigue. When I go in the sun I don't feel great. My eyes struggle with the brightness and I can get rashes/raised bumps on my chest and arms. My cheeks go like the photo attached (this was from Saturday when I went for a walk in North Wales and it wasn't warm at all).

[miccika1 in reply to London1979]

yeah that sounds to me like a possible autoimmune disorder. hope they do the full autoantibody panel if you end up getting a positive ANA, that will pinpoint the exact autoimmune disorder you have. alhtough the treatment is usually very similar between different types.

[Aballard]

I’m so sorry to hear about your prolonged and unresolved challenges. I noticed that you didn’t mention Lyme (and co-infections) which, left untreated, can result in many of the symptoms you listed. It might be worth considering a full panel if you have not already had this done. Very best wishes to you and I hope you are able to find some answers.

[London1979 in reply to Aballard]

Thank you for that, I will make sure to mention this to my GP xx

[CecilyParsley]

Hi Claire. Bless you, you are suffering and the very worst thing anyone with a chronic illness can be told is that it is in your head 🤬. You clearly are ill, your Doctors just have no found out why yet. From what you describe there is something obviously attacking your whole system from respiratory to gastrointestinal and everything in between. There are so many things it could be and an autoimmune condition is plausible. I hope that you have had a full blood screen done not just the ANA as healthy people can have a positive ANA. Let us know how you get on. People here are very genuine and supportive and have a wealth of knowledge. Xx

[London1979 in reply to CecilyParsley]

Hi there! I recently had lots of bloods done, all showing pretty normal findings (coeliac was clear). The ANA test will be next week. I really hope they do find something, it's all getting a bit much. This morning I woke with costochondritis, which I haven't had in a while. I don't need that added to everything! I really hope that I have some answers soon x

[KayHimm]

One of the things I hear that could be what is making your doctors repeat the ANA is the seizure along with white matter lesions in the brain. You might ask them to tell you if the MRI would explain your neurological symptoms.

You have had really hard symptoms over the years. I hope they find a cause.

K

[London1979 in reply to KayHimm]

Hi there, thank you. I've asked neurology for my MRI records, I think it could play an important part in diagnosing whatever is going on with me. My ANA is next week and takes about a week for the results to come back x