Mystery Condition

[taichiperson]

My other half retired just over a year ago and is just about to turn 60. I won't go into medical details, but he realised he was unwell and went to our local doctor. After ultrasound and CT scans and blood tests, the doctor has drawn a blank and although he has prescribed something for pain (low level but chronic) he seems to have given up trying to diagnose the condition. My husband said he felt the doc just wanted him to 'go away'. He had mentioned a specialist but as the latest tests came back 'normal' that is not an option.

What can we do? At the moment hubby is too dispirited to pursue the matter, but we are left hanging not knowing where to go next. I would add that my other half is not one for malingering and never took a day off work unless he absolutely had to.

[Islay]

I can understand not wanting to go into too many details but his symptoms may help the drs and nurses amongst us help with the next step. x

[woofgang]

If you have got around 200 quid, you can get an appointment with a suitable private consultant. The GP will have to make the referral but no reason why he should refuse.

[taichiperson]

Ok - initially he thought it was a skin condition, as he has suffered from excema and dermatitis in the past. His forehead felt sore and he had swelling. When he went to the docs he said the swelling was actually bone, and he was developing a brow ridge. Cancer has been ruled out, as has Paget's disease. The condition is also making him very self conscious, although I have assured him it is not noticeable. He is as you might imagine quite fearful of how it might develop, as am I.

I don't feel we should have to go down the road of private medicine as we don't have a lot of money and who knows where it will lead.

[rsvp]

Maybe your other half could seek a second opinion - imho this would be the obvious next step as his GP appears to have given up on him. However, perhaps your other half's dispirited state has something to do with his interpretation of the treatment he has received.

[woofgang]

It need lead nowhere. The consultant who you see privately can write back to your GP with his/her findings and the GP can then refer back into NHS treatment. Alternatively the Consultant may be someone who also works in the NHS and can then see you via the NHS. You will have to join any waiting list that may exist but will get an answer.

[Buenchico]

Possibly relevant:
http://www.nhs.uk/chq/pages/910.aspx

[anneasquith]

Always a great suggestion. NHS choices.

[taichiperson]

Thanks all. It's a bit raw right now but when hubs feels like tackling it again I'll have some info.

[Sqad]

\\\\Cancer has been ruled out, as has Paget's disease. \\\\

By what means? Paget's disease is only excluded by skull X-Rays.
The cancer that one is thinking about is Prostate cancer.....has he had blood tests to exclude this.

Both conditions mentioned are likely culprits......particularly Paget's.

[taichiperson]

Hubs was sent for an Xray but was refused, as they said the CT scan should have been sufficient. No idea about Prostate cancer - but he has had blood tests. I had no idea it might manifest in the skull?

[Sqad]

C-T scan of what? Skull?
Blood tests? What blood tests?
The pain you mention...where is it?

All very unsatisfactory.
I am not sure that AB will help, but go back to your GP and either ask to see a Consultant Physician or as a last resort get back to AB with the results of the PSA (blood test for prostate cancer) and Radiologist's report on skull X-Ray.

[taichiperson]

Yes, CT scan (and ultrasound) of the skull. I don't know what the blood tests were, and pain is in his forehead.

[Buenchico]

In view of Sqad's post, this might be worth a read, Taichiperson:
http://www.nhs.uk/conditions/Pagets-disease/pages/introduction.aspx

The 'symptoms' section confirms that the skull can be affected by Paget's disease.

The 'diagnosis' section states that people with the condition often have raised levels of alkaline phosphatase in their blood but (as I read it) that's not always the case. (i.e. the absence of raised levels of alkaline phosphatase doesn't automatically exclude Paget's disease as a possible cause of the symptoms).

[Sqad]

So please answer my question....where is the pain?

[Sqad]

I'll have to wait to find out where the pain is as i am off to bed.

[taichiperson]

Have answered your question - pain is in his forehead....

[Prudie]

She has said in the forehead. Nighty night sqad xx

[taichiperson]

Buenchico - I had picked up on Paget's, but apparently it's not that - scans are 'normal'. I do know it manifests in the skull - the mention of prostate cancer threw me.

[taichiperson]

Have looked up the symptoms of Prostate cancer - none of them apply. Where did that come from? That was a scare I did not need :(

[anneasquith]

I was also confused by prostate cancer, thought I'd misread your op .