We have a new moderator here on Sjogren's!

Please welcome assybish as a new moderator here on Sjogren's support. His contributions have been priceless, and he will be working with us to bring about the next set of changes upcoming to all Ben's Friends support groups to happen here.

BTW, I have asked him to include his academic accomplishments on his profile, and to also include his efforts to lobby for better testing and care for Sjogren's sufferers.

http://www.sjogrenssyndromesupport.org/profile/assybish

Congrats Assybish and LOVE your cat!

Congratulations!
I’m in the UK and have really given up the idea that I will ever get any help from a rheunatologist. Anything apart from my dry eyes and mouth can’t possibly be related to sjogrens. Thank goodness for this group!

Wow! wonderful. I have wondered how your posts were so scientific and know I know! Can't wait to hear more from you particularly on trying to feel better the natural way.

That's awesome! Thank you and congratulations Assybish!

Thank you for volunteering, assybish!



Mirrie said:

Congratulations!
I'm in the UK and have really given up the idea that I will ever get any help from a rheunatologist. Anything apart from my dry eyes and mouth can't possibly be related to sjogrens. Thank goodness for this group!

Mirrie I'm afraid my experiences mirror yours - if you look at my profile you will see some of my experiences. I don't have rheumatologists at the top od my xmas card list! Sadly the ignorancce in the UK medics I've met about SS and the many different organs and symptoms it affects and causes is very worrying. My best advice is learn all you can ask questions here all the mods are excellent and we have some very knowledgeable members who understand because we all suffer and have experienced the isolation, lonliness and utter frustration of having a disease that is not recognised. it took me 2 years to train my current rheumatologist and many stand up rows! he now admits I know more about SS than he or any other member of his unit and listens to me and -shock horror - actually reads the scientific articles I give him and says it has improved his training! I've not seen your posts before but if you post I will try to comment from a UK perspective - yes it is different BUT members in USA AUS and SA all have experienced the lack of knowledge of rheumatologists.

ab, I notice we don't have a UK group here on the site. On other other communities, UK members have found it very helpful to band together to help each other doctor recommendations and tips for dealing with the NHS. Is it time to form one here?

Thanks to all for your warm welcomes :)

I know I can be a bit direct and in your face - it's all part of passion and perfectionism and I suffer from both LOL! Also I think UK and USA sensibilities differ from my experiences on other discussion groups (not SS related)

My only defence is no passion no point and thta applies to everything I do from growing/breeding plants to loving cats!

Hopewell I think that "natural" treatments have their place and remember that many "drugs" are plant derived (pilocarpine for example) or are synthetic mimics of herbal compounds. But they aren't a panacea and there is much mumbo jumbo and exploitation around them so I tread warily.
I always look on Google scholar or through my medical research papers site for evidence before I follow up.
I am using myself as a guinea pig for Chines herbs that I have found reasonable scientfic papers on plus discussion with a "chinese" herbalist I have found - we are experimenting - so far no obvious improvements but no side effects other than to my wallet!

Dancer I'm not sure - sometimes I feel that the fragmentation and repetiton this inevitably brings detracts from the benefits of such a diverse community as this. I have seen the other groups and wondered as you do.

I wonder if a subset within the Sjogrens forum is not a better way to go so we can all easily see what is "going down" in other countries but not be detatched from each other? Certainly the chance to talk about local difficulties and recommendations is a good idea.

Welcome to the group I look forward to getting to know you.

Thank You for all you do to help

Great! Glad you'll be here.

Thanks assybish for your reply. I think everyone on here has helped me. Also great to have someone from the uk that understands that the rheumatologists here haven’t any idea of anything about sjogrens. Maybe someone in the uk that does but not holding my breath. I was told I need blood tests for RA when I last went to see my rheumy because I have joint pain and raynauds and neither are part of sjogrens.

Mirrie

Tez is spot on Raynauds is common in many AI and is almost synonymous with SS joint pains are also one possible result f SS.

I don't know the medics Tez refers to but if they are close enough it's worth a try.

I know one at Stoke who is improving under my not so gentle guidance.

Sadly the UK is doing nothing in the field of SS hence my searches abroad for possible therapies etc. China and Japan are the only places doing much on it but their trials are not well controlled and they especially the chinese don't reply to contact but I keep trying.

Thank you! :) Jane

Thanks Tez and assybish, I’m about 25 miles from london so unfortunately a bit too far to come.
I expect at some point I’ll start fighting again to try and get more help. I think at first I was fighting in the hope that I could try meds to see if they would help me feel better. They eventually gave me meds but since the sjogrens I either can’t tolerate or have allergic reactions to any meds they put me on. So I need to re think what I would be fighting for. Actually thanks, just writing that down has helped me to see what I need from the rheumatologist.

  1. Why has my diagnosis changed from definite ss to probable ss?
  2. Does he think I have more than the ss and fibro going on.
  3. Can ss cause a malar rash and sun sensitivity.
    I suppose as I have been told that raynauds and joint pain aren’t part of ss I can’t really get a trustworthy answer to number 3. So will ask that one here.
    Take care and thanks again

Mirrie

I am a bit shorton time today but the answer to question 3 is yes to both.

I think you need to look for another rhenumatologist or medic au fait with SS as he/she have let you down already and as you say you shouldn't need to fight to get prper medical advice in the UK

Thanks for all your help assybish :slight_smile:

Mirrie

try this lady I don't know her but have emailed her and she she seems helpful and her hospital is highly respected

http://www.rheumatologistinlondon.co.uk/

She also does private work.

I cannot guarrnatee she is good but it's worth a try for a second opinion :)

I'm afraid it is always a fight not jusr for AI disease my friend's mom has just been diagnosed with heart issues and a atrial clot. I said this months ago but she was being "treated" for stroke!!!!!!!!!!!!!!!

Only becuase I gave my frined the medical ammo was she referred to a cardio who immediately found the issue. She had been admitted to A&E seen 2 consults and her GP before - how good are they?!