Hi i would kindly need some help if anyone could assist me my swelling in the neck is much bigger and i am very worried.

[zeider]

I was dignose with MEN1 in 2008,i had notice that i have a big swelling in my neck n

before in 2008 while i was in singapore below are my findings from my previous case i would kindly need some assistant in anyone who can help me. I was dignose with MEN1 in 2008,i had notice that i have a big swelling in my neck.

But now the swelling has return much bigger than it was can anyone help please advise.

I was refered to the hospital for further blood test 2 biopsi for the neck and US asperiation and i have yet to get any answers and now the doctors have requested more test to be done.i have been dignose before in 2008 while i was in singapore below are my findings from my previous case i would kindly need some assistant.The swelling in my neck is

getting bigger in the last 4 weeks.I had biopsi and the US asperiation done as well.

The hospital also now request an MRI scan for my brain,neck and the whole body.I am very worried about the swelling in my neck as no answers have been given yet apart from the doctors might have to refer me to addenbrook.They might have to do a teleconfrance with other specialist to find out more can anyone kindly advise me further please.

My case in 2008 was intially presented with recurrent acute pancretitis from mid 2006.

Further evaluation revealed primary hyperparathyroidism-hypercalcaemia 3.48 mmol/l and PO4 of 0.69 and PTH level of 196.7 pmol/L (N:1.5-7.6).Skeletal survey was supportive of primary hyper PTH- salt and pepper apperance of the skull,subperiosteal resorption on mdical aspectof phalanges and osteoporosis score of LS, NOF and wrist -:-4.4,-5.4 respectively.however there was no nephrocalcinosis.ultrasound revealed a 46mmX 35mm nodule mid lower poke right lobe thyroid gland.Radionuclide scintigraphy confirm the lijehood of a right lower parathyroid adenoma.i underwent a right lower phyrathyroidectomy in 2008.

But now the swelling has return much bigger than it was can anyone help please advise.

[Jackie]

Hi I am afraid I cannot help much as of course, very complex and unusual. I am sure you know a lot about your diseases. Have you inherited as it is usually genetic?, May be that could give you a clue. As I am sure you know, even after thyroid surgery, especially with your diseases it could become a problem again. It is possible the MRI is a precaution and not sinister. I have severe pancreas problems ( not drink) and as I am sure you know are also autoimmune. Re PTH did you have an nuclear scan? That is usual and if a problem shows, very successful surgery, as vrey self contained, so even with cancer it is a good out come.

The only thing I can say, is if the doctors think it is necessary they would refer you immediately, ie the same day or week.

It sounds as if they are simply trying to make sure exactly what they are dealing with as so rare.

I am sorry i cannot be more help. However, I do find myself ,even the best consultants do panic especially with some thing out of their experience.

Can you try and get your records , scans etc from Singapore, if paid for , you should be able to. Actually .You should have been given all the tests + results.

I do hope things improve for you. I always find it is much better to know and then worry rather than guess.

best wishes,

Jackie

[hblower]

Hi Zieder

If you are referred to Addenbrookes, I am sure they will get to the bottom of it, they are very much into research and any tests needed will be done, especially if its a mystery.

I do hope that that the problem can be resolved and you get treatment for what is reconised.

Best wishes Helen

[zeider]

Many thanks to Ms Helen and Ms Jackie,

for your support and reply,sorry it took a bit longer to respond,i have been to the hospital for a neck n whole body CT scan,fast for a blood tes yesterday prescribe 2 steroids to be taken at midnite and another blood test today.Surgery to remove the 2 huge lumps in between the neck tommorrow morning,A bit worried but can t wait to find out what causes the lumps after i have done the throidectomy in 2008.I once again thank you both for your best wishes.

Regards zeider