Important Announcement

Please read before going any further.

We are making some major changes to this community.

This community will move to a new and improved format from the 4th May. To enable us to do this we need to close this community. The new community is now available for people to join and can be found at New BLF Community.

This current community will still be available until the 4th May however we suggest that, if you are not already a member of this community, you join the new community now to get the support and information you are looking for.

The new web community has new and improved features that means the support and information available will be easier to access – the quality of the support and information available will be to the high standard it always has been.

We hope that you will join us on the new community and help us to ensure it continues to provide the high quality support it always has.

Thank you

Web Community Rules and Guidance

sarcoidosis

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Posts 5

kitty Posted: 11-10-2009 6:56 PM

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hi everyone my name is kitty i would be so grateful for any input regarding sarcoidosis

6 weeks ago i was a very active 50+ women full time job hubby and i own our own cleaning business.......i started to feel unwell thought it was flu within a fornight i could not breath

i ache everywhere went to doc oh its nothing it got worse another doc sent me for

xray and it came back "not normal " anyways spent week in hospital got worse

they said that they thot pneumonia or some viral lung infection put me on anti

biotics no help other symptoms crept in and eventually they said after scans and

blood tests that i have sarcoidosis that was 2 weeks ago went bk to hosp today

he confirms that it is sarcoidosis but feels that at the moment he does not want

to put me on steroids becoz of the side effects oh i was given anothe xray today

as well it came bk to the doc at clinic right away and he says that my lungs are

showing the exact same abnormality as before and that was that he will see me

in three months unless he says i get any worse ....... in meantime wot do i do

sometimes i cannot even go to the kitchen and bk again without feeling exausted

sore and coughing anybody out there wot do i do thnx for taking time to read this

Posts 600

Geof the Miner replied on 11-10-2009 7:32 PM

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Hello Kitty

First of all I would like to offer you a warm welcome to the Forum.

Sarcoidsis, I have just been talking to a friend that I have made from here she lives in Devon Not only does she have COPD but also as Sarcoidosis. In fact I have just been corresponding with her and straight away I knew there was something wrong, anyway she said that it was the steroids that was causing it why she sounded unwell.

I have mixed with several people with Sarcoidosis sometimes I catch them swearing and every time it is because of Steroids there is people from all over in this group and yes even from America.

Kitty if there isn't any personal help on here I will ask marian if she is willing to come on the forum to have a chat with you if not I will give you their details. In the meantime Kitty I know it can be difficult but try and keep your spirits up love Geof the Miner.

Posts 849

Chris replied on 11-11-2009 12:20 PM

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Hi Kitty,

I would just like to offer you a very warm welcome to the BLF forums.Although I don't have any experience where Sarcoidosis is concerned,we do have a couple of members who do.I've not seen them posting for a little while,fingers crossed they will pop by soon with their welcomes and any information that may be of use to you.

In the meantime I can highly recommend Junes advice with regards to phoning the BLF Helpline.They're a very helpful happy bunch and I can vouch for this as I've used the helpline on several occasions up till now.

Take good care of yourself

Chris

Posts 5

kitty replied on 11-12-2009 11:47 AM

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hi geof

i would just like to thank you so much for your lovely reply and welcome i appreciate this very much and thank you once again for your kind thoughts

luv

xkitty

Posts 5

kitty replied on 11-12-2009 11:50 AM

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hi june

i just sent a post to geof who like yourself has welcomed me warmly to the forum i am most appreciative of your concern and will def take on board all you have said

luv

xkitty

Posts 5

kitty replied on 11-12-2009 11:52 AM

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hi chris

you probably have seen my replies to june and geof i would just like to repeat the same warm appreciation to yourself for your reply and concern and i certainly will get in touch with the blf helpline. Again thank you .

luv

xkitty

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Important Announcement

Please read before going any further.

We are making some major changes to this community.

This community will move to a new and improved format from the 4th May. To enable us to do this we need to close this community. The new community is now available for people to join and can be found at New BLF Community.

This current community will still be available until the 4th May however we suggest that, if you are not already a member of this community, you join the new community now to get the support and information you are looking for.

The new web community has new and improved features that means the support and information available will be easier to access – the quality of the support and information available will be to the high standard it always has been.

We hope that you will join us on the new community and help us to ensure it continues to provide the high quality support it always has.

Thank you

Web Community Rules and Guidance

sarcoidosis

rated by 0 users This post has 5 Replies | 1 Follower

rated by 0 users
This post has 5 Replies | 1 Follower