still uncertain: at drs appt this morning to review... - LUPUS UK

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still uncertain

anbuma profile image
16 Replies

at drs appt this morning to review meds he didnt ask about them so told him I felt better on them.said I had sore throat,voice croaky and choking on food said its something going around(which it might well be)but last time when i told him I had lumps in my neck he asked if my voice was affected and that I still was coughing at night.he said my blood results came in yesterday and were normal -no suggestion of lupus.doesnt explain the rash on my face etc.i don't see how the scan shows nothing when I still have nosebleeds,bruising and swelling and sores in nose.he cauterized my nose where there was a blood clot.

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anbuma profile image
anbuma
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16 Replies
Purpletop profile image
Purpletop

Blood tests don't always show disease activity, your doctor needs to take into account your symptoms in deciding if the disease is active. Sounds to me as it is and he should spend more time with you going through all these. When is he going to check the blood again?

anbuma profile image
anbuma in reply toPurpletop

I have another appt on 1st august fro blood tests(CA125)butnot for lupus.

anbuma profile image
anbuma in reply toPurpletop

I have just booked me another appt fro 5th august(earliest available)to sort out throat and lumps and swelling in neck.(poss graves disease-cos have skin probs on shins-A SYMPTOM OF THIS).throat worse today,very croaky and sore-coughing.hope to get some answers to previous (ongoing)questions .inlast 2 years despite telling dr symptoms over and over -still have no answer to what lumps are,what abdo swelling is,why weight loss,why ribs protruding and pressure on them,skin rash,nasal ulcers etc etc.he still says I have IBS when I know I don't and abdo is bloating (not!-if is then no dietary advice given)when asked why he said im obese -said bmi rate-but I said if im obese then I would be fat all over to just in one area(stomach).and I haven't eaten cakes biscuits puddings and snacks fro about 4 years .

Purpletop profile image
Purpletop in reply toanbuma

Just ask to be referred to a rheumatologist and if he says no, insist, say you are extremely concerned by not only the lack of improvement in your health but the worsening of it. Be polite but firm, this is getting silly!

anbuma profile image
anbuma in reply toPurpletop

I have seen a rheumatologist last november who told me that I had gained 11kgs in 7 years and should diet,he ingored me when I told him weight was all abdominal and in the last 2 years having recently lost weight everywhere else.i also said I don't eat cakes biscuits puddings or snacks so cannot diet cos I don't eat anything.he did not listen either when I told him more recent symptoms (of lupus)andshouted at me "it s fibromyalgia"

op for gallbladder removal (gallstones-which dr never discovered or investigated)is on 15th august.then they will discover whether or not my swollen abdomen is a cyst/tumour..basically frolast 2 years none has given me any answers to symptoms where other s on here have given me answers dr's don't give.

Purpletop profile image
Purpletop in reply toanbuma

That's terrible - I can't believe your doctor!! Have you tried seeing someone else? The gallbladder removal is likely to be laparoscopy/keyhole, so unlikely to find anything else because they go directly to the site and out. Have you had any CT scan of the abdomen, any ultrasound of the abdomen?

anbuma profile image
anbuma in reply toPurpletop

when I go for my surgery I am hoping to speak with consultant beforehand .if they do keyhole surgery and I do have a cyst /tumour then that will get in the way I believe they make 4 entry points to insert instruments.they wont be able to insert the instruments to get to the gallbladder??tahts my thoughts.i have had scans but the last was in January(private)cos dr refused to arrange one.before that was a year before.stomach just so big now cant wear my trousers over it.

anbuma profile image
anbuma in reply toPurpletop

if its cyst/tumour then need a gynae or oncologist??

Purpletop profile image
Purpletop in reply toanbuma

First of all someone needs to identify that there is a cyst, usually by having a scan in the relevant area. The scan can be requested by your GP, if there is a cyst or anything abnormal with the scan, the GP should refer you to a specialist in that area of the body. If there is a cyst, the specialist will need to see whether it is benign or cancerous, possibly by way of a biopsy if the cyst can be reached that way, but I'm not a doctor so don't take that as gospel. Only IF a cyst is cancerous, an oncologist (I.e. specialist in treating cancer) gets involved.

I would firstly ask your GP to send you to an abdominal scan because you're concerned of having a cyst and want to check it out properly. If he still refuses because he says you're just overweight say that he has no way of knowing that, he hasn't done any tests that conclusively show it is fat, so why not send you for a scan to be on the safe side.

But this is assuming you haven't already had a scan and it showed nothing wrong!

anbuma profile image
anbuma in reply toPurpletop

I have had scans but not in pelvic area.as I have said and maintained all along any weight gain is all abdominal.i look like I am seven months pregnant.my dr says I am obese cos of bmi rate.what I told him and he wont accept is that he only knows my total body weight not that weight gain is in one place only ie abdomen.i have lost weight everywhere else.if I were obese then I would be fat allover.having read other blogs and magazine articles OC is often mistaken for a bowel condition and there are people who have had cysts which haven't shown on a scan.

the size and feel of my abdomen is enough to see there is something

anbuma profile image
anbuma in reply toPurpletop

having a cyst or tumour you would not be referred to a rheumatologist??

Purpletop profile image
Purpletop in reply toanbuma

No, rheumatology is more about joints. You need a gyn specialist for that.

anbuma profile image
anbuma in reply toPurpletop

what are your thoughts on my reply mentioning bmi rate and oc being mistaken by drs ?

Purpletop profile image
Purpletop in reply toanbuma

It depends how the bmi was measured - if it was measured with callipers across the entire body, then that would give a better indication than that where you stand on the scales and a little current goes through you giving a reading. Still, I don't think bmi is an accurate measure, just an indicative one for certain things, e.g. assessing cardiovascular risk as part of a larger battery of tests.

As for OC, you don't say what other symptoms you have (pain, urgency to go to the loo, etc) - a bloated tummy can mean many things, not only OC. Still, I see you're going to have your CA125 tested shortly - just bear in mind that a positive CA125 doesn't necessarily mean cancer, it might be resulting from a benign condition too.

Try not to worry until you have something to worry about - at the moment you're taking all the steps you needed to take towards diagnosis, now it is a matter of doing the tests and letting the specialists interpret the results.

Good luck, let us know how you get on.

anbuma profile image
anbuma in reply toPurpletop

all in know is that at the time my DR measured my height and weight and used them to caculate bmi.which is why it isn't accurate .at first dr never explained what ca125 test was or that he was testing fro it.over last week have more new pain in pelvic region.whatever the reason is the weight gain is all abdominal so dieting is not the answer ,i cut out one thing I was having everyday for breakfast fro 2 weeks and it made no difference whatsoever.anyway if it is bloating- which dr never actually mentioned-until 1.5 years afetr probs began.then no dr has said anything about diet or what to expect from it.this argument has being going on for almost 2 years,

my stomach is a solid hard lumpy mass which to me indicates other than bloating.bloating would nto increase my weight by 2 stone??

anbuma profile image
anbuma in reply toPurpletop

are you in any way a member of medical profession??

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