Appointments.

[daisyd]

Hi all

You may need to make yourself a coffee for this one!

1) Yesterday I had two appointments one with the occupational health Doctor, Who told me that Stress and depression could cause all the problems I was experiencing.

He was shocked when I told him that i had Sneddons syndrome.He had never heard of it before. along with that Hughes syndrome ,no wonder i am stressed and depressed although less depressed on the antidepressents I have been given.

I would advise anyone who feels depressed to see their Doctor about antidepressents. take a note or someone with you if you feel you can't talk about it,

Their is no Sneddons web site I wonder if i could tell the few people I write to on another site for all know syndromes that they could join this site as i believe some patients have it here too ( Only about five of us I believe their are only four in a million cases.)

It makes you think on that site their are some really awful syndromes life doesn't seem fair does it !

2) In may I had a bone biopsy because when they gave me a Dexa scan thinking because I might be gelling Oestoporosis. Anyway it showed i had really dense bones.

I had a bone biopsy in May they sent the piece of bone off to london to be analysed. The surgeon said my bones were the toughest he had ever seen anyway I got my long awaited appointment at last.

The Rhematologist said I was a very rare case ( Nice) and that I must have had Hughes syndrome for a very long time !

It had affected my bones by the lack of the blood supply The xray looked very intersting of my spine not that I understand it but the bones that were affected were darker in colour and you could see dark ??? i dont know what ? blood vessels

He said I would have been really painful. I know that the top of my back had been until i went off sick and my Husband lifts the washing out side for me Plus all heavy weighted things.

I have have had on going back ache for years seen loads of physio's

Have go an appointment to the physio's again.

I was wondering if anyone else has this.

I have told him that I am willing to be used as part of any research, but if i need another biopsy could it be from my Bunion ! He is going to write to Professor H and will write a paper on it if not common .

I think thats it. Should have been doing the house work

Love Karen xx

Oh yes i have an appointment at work on Friday about sickness and returning to work, wish I had the energy!

[paddyandlin]

Hi karen,

Thanks for sharing i am afraid i have never heard of Sneddons Syndrome am now going to google and find out more i am nosey like that. I am glad you sound so posative and i do hope that there will be people on the site who will be ble to help you.

Well done on the reaserch let us know how it goes.

Regarding your returning to work appointment take information on the Symptoms on your condition and mark up all the ones that apply to you and just be truthful if they try to force you back speak to your doc and unionrep if you are part of one and if not ther are agencies that can help you if you want the details let me know. If you feel you can go back the Jobcentre has project that can help with funding for support or equipment.

Good luck and you are not on your own please let us know what happens.

Paddy

[jessielou]

Hi Karen

Sorry not posted before,

Welcome and sorry to hear what brings you here.

I don`t know very much about Sneddons Syndrome, Have had a look on net to see what info there is about, have to say not a great deal.

What I did find out is that it seems to be closely linked to APS and about 40% of Sneddons patients have positive tests for APS. I don`t doubt that you know much more than that already. It sounds scary.

I totally agree it doesn`t seem fair at all.

I`m pretty sure the other Sneddon`s patients would be welcome on here, Information on the Hughes APS support site says that Sneddons is often seen with APS or Systemic Lupus.

I would follow Paddy`s advice with regards to returning to work.

Hope you well today. Take care, gentle hugs Jessielou xxxxxxx xxx