It May or May not Be Lupus: Unsure Whether I Have... - LUPUS UK

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It May or May not Be Lupus

eirinym
eirinym

Unsure Whether I Have Lupus at this Point, but... I'm definitely struggling as I'm just beginning to get to the bottom of what's going on. It all started a couple of months ago with acid reflux and then abdominal pain. But shortly after I got the abdominal pain a bit over a month ago, I started noticing skin symptoms as well. Drier skin, tiny red dots on my arms mainly, sometimes with red spots on my legs near my knees. Now I've got joint inflammation as well, with my right knee the main problem. I've still got abdominal pain, but the acid has gotten better. I am having more blood tests done, the first two sets were largely routine which showed nothing abnormal. But my gastroenterologist said she is suspecting autoimmune involvement and mentioned Lupus. I'll also be having a CT scan and an endoscopy and colonoscopy. So far since this began I've had one day where I had a high fever. Other than that, I've had a normal temperature.

This whole experience is pretty nerve wracking for me as I've been largely in good health for several years. Then suddenly I'm experiencing all of this and it doesn't seem to be improving.

Years ago I was diagnosed with diabetes insipidous and I had to take desmopressin for a few years. I had two MRIs of my head looking for a tumour or anything to explain it but my result was that it was ideopathic. A few years later, just as mysteriously as it arrived, it went into remission. I also had, and likely still do have low hormone levels, testosterone levels. I am male, and I did take replacement therapy for several years as well but haven't in the past few. Since I was diagnosed with DI, I've had issues with my joints. And I've had fatigue, but I have usually just got on with it. I never had any gastrointestinal symptoms or real skin issues. Or joint inflammation, until now.

I've looked into the symptoms of Lupus and have been reading accounts from people. But so far it's hard to conclude whether it makes sense in my case or no. Other things being looked at are Celiac and IBD, like Crohn's.

I don't know if anyone can give me any advice or if anything I've said sounds familiar or makes sense. But if anyone has any words for me, I would greatly enjoy to hear from someone who might understand the worry that I'm currently having.

6 Replies
oldestnewest

hello eirinym,

Most of us face a difficult time before we get a clear diagnosis, and even after that, it often turns out that an initial diagnosis is only provisional and subject to refinement and change. This is because lupus/SLE is only one of a whole spectrum of systemic auto-immune diseases, with many, heterogenous symptoms. In fact, it often seems like each one of us has a slightly different version to everyone else. As you know, the definitive guidance on diagnosis is currently here academic.oup.com/rheumatolo...

Hope you get some clarity soon - it isn't easy living with such uncertainty x

Hello eirinym.

I’m in the same boat. Most markers say yes but because it’s not all they can’t be definitive. It’s so annoying as all I want is to know what oath I’ve got to take to be even half the person I was. I understand frustration and that doesn’t help my moods. I hope they sort you out one way or another soon xx

eirinym
eirinym
in reply to Sarahd1609

I'm making some progress but I'm having trouble with anxiety. When I went to the hospital they did give me lorzepam to help relax me, and it does a bit. But it also makes me feel a bit weak and unsteady sometimes. The Prednisone I was on I'm pretty sure did a number on me and the hospital, and staff there were basically saying the same thing. I'm feeling much better than I did when I was admitted but it's surprising a short duration of that drug screwed with me so much. I'm glad to have all your responses here and it really helps to know there are people out there I can talk to. Thank you so much and I hope you get help and answers as soon as possible as well

Hi,

I can't say it better than Whisperit.

But your not alone, I have a long boring story of why I don't have a diagnosis. I won't scare you with how long it's been. I so, so understand your frustration. Also I beleive there's meds that would enable us to be more of who we were before. I'm headed back to my GP to see if I can see any Rheumatologist.

I would follow Whisperit's advice.

Keep us updated!

🌻🌻🌻

Chanpreet_Walia
Chanpreet_WaliaAdministrator

Hi eirinym,

Welcome to the LUPUS UK HealthUnlocked Community!

Flu-like symptoms i.e. fever/chills; skin involvement, extreme fatigue and joint aches/pains are all symptoms that are associated with lupus. To find out what other symptoms are associated with lupus, download or request our free information pack at lupusuk.org.uk/request-info...

In order for a diagnosis of lupus to be made, there are certain criteria and tests that need to be met. To find out what they are, read our blog article here: lupusuk.org.uk/getting-diag...

Below, I have included some information links which you may find useful:

Pain management: lupusuk.org.uk/pain-managem...

Managing fatigue: lupusuk.org.uk/managing-fat...

Skin: lupusuk.org.uk/wp-content/u...

Please let us know how you get on, wishing you all the best.

I'd like to thank all of you for responding. It's really amazing to know other people out there going through health concerns and the difficulty it puts us through. I have since had another series of blood tests run, as well as a CT scan. Thankfully the CT scan of my heart, lungs, and gastrointestinal system, and kidneys all looked good. They did find I have an elevated ESR. So they are sending me to a rheumatologist. I guess the good news at this point is that it seems I'm catching this early.

Also, a couple things I've been worried about, like MS or scleroderma, I seem to not match well for those at all. Most of my symptoms have been skin related apart from the (what I perceived to be) gastrointestinal issues. And I don't seem to have Raynaud's. Just odd rashes, sore spots on my arms, little red pin point dots. I'm not quite sure they ran the celiac panel at the hospital, so that may still be something my gastroenterologist does. The one thing they didn't test at the hospital was my ANA level. They said that's not something they usually do in the emergency, but that, I believe my next round of blood tests will do, if not then, then with the rheumatologist.

I was in the hospital last night, it seems I had bad withdrawl symptoms from prednisone which my doctor prescribed to me as, what I assume he thought to be, a precaution. My heart rate got extremely elevated, my muscles got weak, and I got hot, my blood pressure was quite high which is unheard of for me (who usually has blood pressure which is lower than normal). I was also dehydrated. Thankfully they got my fluid levels back to normal, and I feel much better after being able to sleep well. I hadn't slept well in days. I'm still a bit shaky but I think I'm starting to see the light of the tunnel

After speaking with my mother about all that's been going on , I'm learning more about my family and its history of diseases. My mother says she was diagnosed with fibromyalgia many years ago. They ran tests for her which were negative on lupus, but I wonder about her. She's had many skin problems throughout her life, and recently had diverticulitis. She had a stroke ten years ago, but she's been well on that score since. She's been managing her blood pressure and I think she's in better health overall now than she was. She also told me my aunt began getting arthritis when she was 25. Two of my cousins have GERD. But no one in my family has been diagnosed with anything else. Two cancers, both of my grandmothers, one ovarian, one breast. My father's mother had her breast cancer removed early and she lived 15 years after that. It came back shortly before she died but she had congestive heart failure and other health problems. I don't believe it was that which was responsible.

I'm feeling better today than I have in a month. I really hope it keeps going that way. I know even if I do have Lupus or Sjögren's, I can manage it. I feel like right now so long as the rest of my body is as healthy as it is I can make it more so and fight to keep myself that way.

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