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Discussion Starter #1
hi all,
i havent had an official diagnosis yet as i dont see a rheumatologist until may 18th.

ive had 2 pulmonary embolisms in the last 2 years, pleurisy, anemia(but i believe its the iron deficient kind), i come out in a hives rash in the strong sunlight(june to august time) if i dont cover up started 3 summers ago with the tiredness, since feb this year i have muscle weakness in my thighs (that gets so bad i cannot walk aside from round the house) and upper arms, ache in my back, neck...feel so tired on times that i cannot lift my head to sit at the computer, i get breathless and suffer pain in the right lung, ..and since feb this has all escalated so my doctor finally ordred blood test...

the only tests i have had are these...cbc which was fine aside from my back up supplies of iron in my bone marrow are very low prbably ue to recurring anemia, throid and hormoe leeles..which were both normal,...i have a rheumatoid factor of 134 but no pain or swelling in my joints to indicate rheumatois athritius, my esr rate was slightly elevated, after some research i asked for antiphospholipid and ana blood tests...i have a positive anticardiolipin igg at 13.4(igm was only 2.2 so considered normal). my ANA was negative...though i have only had one done and have read this can change?

anyway a week b4 decembers PE i began pain in my right side lower abdomen, the hosiptal doctor refued to u/s due to him "only being interested in my lung". in feb it got worse and again i ended up in casualty to be told i neede a referral to a gastro specialist..again no u/s...my doctor finally got me in last week for an u/s as my stomach swoll up 3 inches and they have found free fluid in my bowel at the site of the pain so i have a ct on tuesday...the doctor said it coudl be an absess or a tumour..tho i have read it could be adhesions(i have had 2 previous c sections)

my question is are there bowel issues with lupus? i have not found much on this...nd currently without me requestign specific bloods no offers of diagnosis are beign put forward eveen with some of the more serious issues ive had (liek the PE'S...they didnt even test for aps after 2 of them!)

prior to 3 years ago i was never physically unwell so now i feel as though my body has just broken down on me...im worried about not being able to play with the children, run my business, finish my degree...im in limbo land...
the only meds i am on are warfarin...

thanks for any help
emma
 

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Hiya Emma, I have had three c sections and lots of probs with adhesions.. also ovarian cysts and endometriosis which reared its head after the c section number 2...dreadful surgeon, I was butchered! Anyway 2007 had part of my bowel removed and hysterectomy, ureters scraped and a lump removed in my abdomen all down to Endo and previous surgery so it could have a strong bearing on your symptoms now.... anyway you are being investigated so that is brilliant... keep plodding on, hopefully you will get some answers soon, it can all be quite scary but try not to stress about it too much..easier said than done :( Let us know how you get on and keep pushing for those answers, hope you are keeping a record of symptoms and photos of any rashes etc for your next Rheumy apt. All the best and take care
Claire X
 

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Hi Spica,
Like you i'm waiting for a diagnosis,
If it is SLE it can affect any part of your body, i had my gall bladder removed 6-7 yrs ago, and ever since my stomach is not my own anymore, i never know how it is going to be from one day to the next. I think it is IBS, because of the symptoms.
The best person to see is The rheumie, which you are waiting to see.
I hope they know something about Lupus.
I wish i could offer you more, but there are plenty of people here that will help i'm sure.
Good luck, let us know how you get on
Hugs & spoons.
 

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Discussion Starter #4
hi and thanks for replying

i have had a u/s and the ovaries and womb were clear..no endo, no cysts.

the free fluid is in my bowel...i also have much changed bowel habits since march (alternating go too much and not go at all sorry if tmi!)..so was wondering if there is a specific bowel related (gastro) lupus issue?

its not so much that im worried its lupus..at the moment it is more not knowing what it is with the blood clots, the exhaustion...knowing its sumthing can be coped with...knowing nothing is ...well frustrating. if the ct isnt showing up what the free fuid is then i think they will do a laparoscopy as only really big adhesions would show on a scan. not too sure how happy they will be about that with the wrafarin though...sorry for winging! its just the waiting seems to go on and on and having to push and nag doesnt help. im so hoping i get a rheumatologist who is good.
thanks
em x
 

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Lisa_S
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HI Emma. I had quite severe abdominal pain at one of my lower points - post-diagnosis, but pre-control. Appendicitis was suspected but ruled out, and I remember being pretty much doubled over in pain in the ER.

I was quite ill systemically at the time, (I think I had all 11 of the criteria at one point...) and I was also pretty young, so the details are quite foggy, so I don't think I'll be much help to you except to say that yes, we can have abdominal/gut issues with SLE.

I hope you get things sorted out quickly!

Lisa
 
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