In a muddle

[oddsox]

Hi guys.
I'm at a bit of a loss at the moment. I was refered to rheumatology 7 months ago (I'm in the UK). I became a bit fed up of waiting for my appointment to arrive, so I searched online to see if there was a Sjogren's specialits close by. I managed to find one in the next town and asked my GP if I could transfer to this specialist since he would definitely know about sjs. The GP agreed and sent a request off. This was a month ago. Today I received a text message from my local hospital (With the non specialist) to remind me I have a appointment on the 28th June. They haven't bothered to send me the initial appointment just the reminder. There's not even a name of the consultant, just a time, date and the hospital Sounds real organized doesn't it *Sigh* The conundrum is, do I attend this appointment with the unknown rheumatologist and risk him having a clue about Sjogren's, or do I wait even longer for the expert, so I can have my condition confirmed or ruled out. My health has declined a lot this year, and I really need help to get on top of what is causing my problems.

These are the tests I've had so far, which haven't being very helpful to date.
Years of negative blood test. Schirmer test = positive . Tear break up test = low. My dentist said he didn't have the equipment to do any of the tests, but did say my mouth is very dry. Thankfully my teeth are very healthy. I cannot have a lip biopsy due to complications caused by Ehlers Danlos syndrome.

Thank you in advance for any replies.

[irish]

I don't know how things go in GB but I am wondering if you can do the first appointment and then if not happy do the second appointment. You might want to hold off canceling the expert. I would also call the first appointment and find out who you are to see and what his area of expertise is. Good luck. Irish

P.S. This is what one calls a crap shoot. I have had widely acclaimed docs who turned out to be duds and then some very quiet less egotistical ones who know more than you would expect. It is a quandary for sure.

[oddsox]

Thank you for your reply. Irish. I was wondering if I should try that. The problem is, I saw a rheumatologist at my local hospital 2 years ago. He took one look at my notes and said "There's no treatment, there's no cure. There's No treatment, there's no cure. There's no treatment, there's no cure" I was a bit surprised by his mantra, but persevered and asked about some of the symptoms I'd had. he simply stated "You have complicated conditions, you have to expected complicated symptoms, there's no treatment, there's no cure"
If this next rheumatologist at the local hospital is as useless, I have a feeling my GP is not going to believe me. They had serious doubts I was telling the truth about the first one.

[Navigator]

Before you go to the appointment I would read about SJS and walk in with a list of treatment options . Off the top of my head the ones for not too bad SJS include

Plaquenil (hydroxychloroquine Sul) (for joint pain/fatigue/general disease progression)
Restasis/cyclosporine opthalmic emulsion (for dry eyes)(ophthalmologist prescribes as well)
Cevimeline HcL (for saliva) there is another option as well but I forget how to spell it.
Triamcinolone Acetonide Dental Paste (for mouth sores)

Treatments get ramped up from there. But to say there are no treatment options is not true.  Look at the sign offs of the people on this blog for ideas. Perhaps if you counter with actual drugs the MD will rethink the response.

[oddsox]

Thank you Navigator. That sounds like a good idea, I will add those meds to the symptom notes I'm taking with me.

[SJSman]

Hello,

Just want to mention that a Sjogren's Specialist might not be too supportive if you continue to test negative for Sjogren's.  You may be able to get him to treat your symptoms though, maybe, if he is willing to see you again. 
If not, your GP should.

I am wondering what is the Ehlers Danlos restriction on getting a lip biopsy?  A lip biopsy can only help you - it is another chance at getting a diagnosis if you believe you could potentially have Sjogren's, right?   If your mouth dryness is in fact caused by Sjogren's, then a lip biopsy will show that brilliantly.  I would recommend pushing through the ED restriction if they will let you get a lip biopsy and the test result for Sjogren's is still valid for people with pre-existing ED.

Do ED plus dryness, plus fibromyalgia, explain all of your symptoms? 

Is Sjogren's a more impressive diagnosis for UK Benefits than ED?  - I would not think that would be the case, however, everyone knows the UK Disability Living, and Council Housing Benefits are, erm..., kind of arbitrary (crazy) in some regards, especially now with the caps and all that. 

ED alone can get seriously bad with fatigue, joint pain, and all the other connective tissue stuff, to the extent that ED alone can be completely disabling for real.  ED can range from simply having hyper-reflexive joints and no other problems to full-on functional disability, right?

My niece has ED so I am interested in it.  Her case seems unusual to me as it was extremely bad and disabling for awhile, then she went into a stone-solid remission and regained full functionality - I thought, or rather think, that was weird but I don't know the finer points of living with ED, which is one reason I am asking so many questions.  If you don't care to comment on the UK Benefits system, that is fine - I am just wondering about it.

[warmwaters]

So check with both the US Sjogren's and UK Sjogren's orgs, and download some info that describes how SYMPTOMS can be treated.

While technically there is no cure, the usual approach is to treat the symptoms - the dry eyes, mouth, joint or muscle pain, etc.

It can be direct, like eyedrops for dry eyes, or indirect, like plaquenil or a steroid that may change your systemic response.  I think because you have ED, you may have more complications and restrictions on medicines. So you really do need someone special who can integrate all this info.

Who treats your ED?