New Member Saying Hello

[Ann S]

I joined this great forum today and have spent hours reading all the useful information.  Am feeling particularly rotten at the moment so it's already a great comfort to find other people who really understand what it's like.

I have been unwell, in varying degrees, for many years and along the way, have seen just about every 'ologist in the south of England!  I was misdiagnosed with ME/CFS and struggled on until in 2001, I had what can only be described as a 'crash and burn' when I no longer felt able to carry on with my busy job and was struck with severe depression.  I was put on heavy duty antidepressants (which made me feel even worse) and even spent a week in hospital.  I never returned to work and became a virtual recluse while I battled with the depression and debilitating fatigue.  I eventually came to terms with the fact that I could only do a fraction of what I used to but I never believed it was a mental issue because I've just never been that kind of person.  I'm naturally very positive and have a real passion for life... it was just that my body wouldn't allow me to do things and that was what was making me miserable.

Then in 2007, I had a very scary "funny turn", and ended up in A & E with a suspected TIA (mini-stroke).  For about 20 mins, I lost half my vision and was unable to speak properly or figure out how to use my phone etc.  But x-rays, brain scans etc. didn't show anything so I was sent away to wait and see what happened.  Over the next 18 months, I had 2 more of these turns and because I was so scared, went to see a neurologist privately and he ran a LOAD of blood tests.  He spotted some abnormalities that suggested autoimmune disease so referred me to a local rheumatologist who did more tests and confirmed Antiphospholipid Syndrome.  He was very good and extremely knowledgable but having told me it was important for him to see me again in 3 months, cancelled the clinic for another 3 months and I felt I couldn't wait because I was so worried about myself.  So I did lots of research and found the London Lupus Clinic which is a private clinic at the London Bridge Hospital.  Most of the doctors there also work in the NHS at the Lupus Unit at St Thomas's Hospital, which is reckoned to be a centre of excellence and where a lot of research into these wretched conditions is carried out.  There I was diagnosed with Sjogren's and Connective Tissue Disease to add to the APS.  When my insurance stopped paying out, the doctors readily transferred me to St Thomas's and they seem quite happy for me to skip around between NHS and private as necessary.

I was on annual checks but but have recently developed some horrible new symptoms (severe diarrhoea, constant cough and horrible burning pain and numbness in my legs, feet and hands) which are likely to have me returning there any minute now for reassessment.

I take Plavix for the dangers of sticky blood (allergic to aspirin), Plaquenil which is supposed to help the pain but doesn't seem to, Simvastatin to lower cholesterol and Lansoprazole for acid reflux.

Hope this post isn't too ridiculously long and I look forward to getting to know everyone and joining in on the topics.

[Chickpea]

Hi Ann

It's good to meet you and hear more about your journey here.  This is a great forum and you'll find a lot of good friends here, useful information and also a lot of fun.  Try to join us on Wednesday nights from 7 pm UK time in the chat room where it can get quite wild at times!

It sounds as though you've had a bumpy ride here.  Many of us have been diagnosed with other conditions on our way to a SjS diagnosis - it was Primary Progressive MS in my case - and some of us are also told that we're depressed.  Well if we weren't before we started this journey, we're pretty likely to be heading that way after months/years of tests and misdiagnoses!  Sometimes I think it's because the majority of people diagnosed with SjS are women in their 40s and 50s that the doctors use the 'lazy' label of depression.

Do you have many of the dryness issues or does the Plaquenil help you deal with them?  Have you found any pain relief or pain management tips that help?

Take care - Chickpea

ps It's great to know that you live so close by me!  You're my first near neighbour on SjS World.  I'll personal message you so we can 'chat'.

[Katybarstool]

Hi Ann

Welcome from West Yorkshire. As Chickpea says, you've had a bumpy ride, but you have now found a wondrful new family of 'Sjoggies' who will offer you advice, support, a shoulder to cry on, and people to laugh with too!

I look forward to getting to know you.

Kathyx 

PS Maybe we will be able to arange a big meet up in London sometime?

[beverly jane]

Hi Ann
   Welcome, glad you found this site, It really helps. Chat area is great if you need to talk, or just sit around and listen to people you know that understand you competely.
                        Bev

[fluffiebunnie]

Hi and welcome, from another nearby sufferer!! I am in Kent... I have recently been diagnosed after a year of strange problems... this site is a godsend and stops you feeling completely alone and crazy!!

[Scottietottie]

Hi Ann 

Welcome to Sjogren's world. I'm in the UK too but in the north rather than the south. (Of England at least) There's another Brit who goes to St Thomas's and I know it has a good reputation. I found that Plaquenil helped with fatigue and brain fog but hasn't done much for pain. I'm reluctant to come off it though in case it has done something for pain and I just haven't noticed!!

Plaquenil can cause diarrhoea though so it would be worth asking your doc if he/she thought it could be a side effect. It affectys some and not others. It's not unusual for sjoggies to have IBS though. 

Take care - Scottie 

[Bucky]

Hi Ann,

Welcome to the fold - I'm in the U.S., but it's amazing modern technology can bring us from all across the globe to the same website!   

I can't add anything to what the others have already said other than to welcome you.  Jump in when you feel comfortable.  Like Chickpea mentioned, there is a wild group that meets on Wednesdays for live chat.  She said "wild", didn't she???  I think she did.  I've been therefore, I KNOW they are a wild group.  Hee hee      (You can join chat the other nights too, although it will be in the wee morning hours for you.)

Take care,
Bucky

[Ann S]

Hi everyone and thank you for the lovely warm welcome.

I love the Internet!  How wonderful that we can gather from all over the place, swap our experiences and support each other.  I certainly will join in the discussions and chat sounds great... if I can figure out how to use it.  I'm often awake in the wee small hours so perhaps I'll pick a quiet time to do a trial run.

Chickpea... yes I do have dryness issues but they come and go.  Sometimes it's very bad and others, hardly noticeable. On bad days, I can't move my eyeballs at all when I wake up in the morning.  I have drops and some slimy ointment stuff that the optician gave me but the effects seem to be rather short lived.

Scottie... I feel exactly the same about Plaquenil.  I don't think it's helped with anything really but like you say, I'm reluctant to stop taking it in case it IS doing something.  Thanks for the info re. diarrhoea as a side effect and I'll definitely mention it to the doc but I've been taking it for quite a long time without problems so it would be odd if it is suddenly disagreeing with me. 

Kathy... a big meet up in London would be great if we can organise it.  It would be a real challenge catching everyone fit and well at the same time but I'm sure we could manage it somehow.  I'm up and down to London quite a bit so would always be up for it.

In the meantime, I look forward to getting to know you all better on here.

Ann
xx

[lynnmarie219]

Hi Ann and Welcome to Sjogrens World!


I cant add much that hasn't been said already...but I did want to pop in and say "Hello...glad to meet you"! This is definitely a great place to meet with others from all over the world who really do understand and get it...because we have all been there in one form or another.

Jump on in whenever you feel comfortable.....and welcome to the family!

[Pisces24]

Like was said previously, 99% of us here have been through the "doctor rounds". It really opened my eyes to the fact that doctors don't know or can't find everything.  Even my own GP was getting disgusted at all the specialists I got sent to that couldn't find why I was the way I was. They are specialists for gee whiz!!!

I learned there are some specialists that if you fit their "textbook" definition they will work with you. BUT if you don't, they don't really want to bother or get into your problem. So they will run obligatory tests and pat you on the head and send you home. I am in the US but I go to a teaching hospital here.  The specialists I see are very knowedgable, well respected by their collegaues, will actually work in finding out the problem, and are actually personable.  That is how after 6 years I got diagnosed with SJS. My diagnosis in 2005 was indolent lymphoma.

Unfortunately, you've gone through alot more ^&% than some of us had. I guess I was lucky as my symptoms were not really bad:  odd bloodwork, easy getting sinus infections, teeth decay, and partroid gland swelling.
Hang in there. Remember that you are the patient and are PART of your healthcare!  Ask questions, demand some kind of answer or tell em to find out.   Good Luck!