Well things 4 me still hasn't been the greatest still having my facial falls, an all GP wants to do is admit me but am on a neuro list and just waiting 2 get into a main hospital in Belfast 4 more tests but really wish it would be sooner rather than later.. But on a good note I got myself back into my hobby my photography joined a photography group (geek alert I no haha) but that was a big step 4 me don't get every week just depends on how many turns I take a day. Fingers crossed once I get sorted with my neuro problem me an the other half will get a wee break away god nos we deserve it !! Trying to stay positive is so hard ..
Ruth x
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Ruth_lderry
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Photography sounds wonderful, nothing "geeky" about that at all
You are so right. Staying positive is so hard. It's good to be able to share the same sentiment on here.
Just thought I'd send you a reply as I noticed you spoke about having facial droop. I too have this and was indeed admitted to the stroke ward in April 2013. I couldn't speak and lost the feeling in the left side of my body, muscles in face droop, speech changes, ataxia, ptosis etc - my brain scan was also negative for a stroke but I was really ill for over a year - couldn't leave my house etc - I still have problems mildly relating to this at times. I did see a neurologist and they don't know what causes this - I have been tested for myasthenia gravis but it is negative. I'm still waiting for scan results on my spine so still in the very long process of diagnosis - at the moment they are saying I have sero negative connectuve tissue disease lupus like - I'm on all the Meds for it - steroids, hydroxy and I take neurontin for the Neuro problems. I would be very interested if you could keep me posted as to how you get on seeing your consultant as I feel like I'm getting a bit of old flannel at times and not always sure where to go next. If you wish to speak more about this please feel free to contact me, either here or by private message. Kind regards Jo x
Hi Jo. I noticed your reply to Ruth and thought you might be able to relate to my experience. I have had ANA neg lupus for 25 years and managed it easily with lifestyle and minimal drugs etc. In 2011, I noticed that I was falling a lot and actually had 2 crashing falls which landed me in hospital. In 2012, I noticed general worsening of flares added to which I was experiencing episodes of significant muscle weakness, respiratory weakness & apnoea, choking episodes, ptosis and so on. I thought I was dying and this continued for 18 months. My Rheumatologist was adamant that it was the Lupus despite lack of serology, Neurology blamed Lupus or the drugs used to treat it, Respiratory blamed the weight I had lost due to feeling so grim (and scared). Everyone suspects MG as a possibility yet tests for this and everything else were clear . .
Two years on, the problems still wax and wane but (except for resp) much less so and generally I function normally. A Prof of Rheumatology cites UCTD/SLE as the diagnosis and, as such, the disease course has no defined parameters. It has been a real wake-up call to me, I would not have believed that this condition could rear up in this way and then remit. I don't think I'll ever return to my former strength but its manageable. In the absence of any other diagnosis, I'm assuming that it must all be due to the CTD but it can be bewildering. I wish you and Ruth the very best of luck and perseverance in finding out what is going on. Best wishes. C x.
I'm in a situation where my private Rhuemy thinks that I have a connective tissue disease - lupus like, my serology does not back it up - all bloods negative. I even get the Malar rash, I have an increase in symptoms every month with my monthly cycle. Before I went on steroids I could barely function I was in terrible pain in multiple joints, had bakers cysts on both knees which ruptured twice in the same year, the muscles in my face droop my speech is slurred, ptosis, numb right jaw, hearing problems, patches in my peripheral vision in both eyes that came on suddenly, livedo reticularis etc etc - I knew something was very wrong but despite going privately ended up in the stroke ward, despite it not being a stroke I was discharged unable to walk, I had severe noise intolerance, muscle weakness and my legs would just pack up so I Would hit the floor without warning, I was too ill to leave my house for a good year. The hospital just said go and see your consultant, who thought MG - went to see private Neuro who said it was functional - my consultants are treating me for connective tissue disease but do not believe in sero neg lupus and have said I won't get a diagnosis unless my bloods change, there was talk of sending me to St Thomas to see a neurologist but they wanted to scan my spine first to see if there was any indication of inflammatory arthritis. It has come back that I have hetrogeneous bone marrow - but no one came tell me why and I have had to have a repeat scan which I'm waiting for the results - meanwhile my NHS Rhuemy would like to reduce my steroids. I couldn't function before steroids and was put on these by my private consultant- he said if these work it would show you have connective tissue disease! There has been no referral to St Thomas as yet, I did say to NHS Rhuemy is it worth me going up privately, she says she doesn't mind if I want to get a second opinion but they won't be able to tell me any more then she can. At the moment I'm having a relatively good spell and I am managing to do most things which is heaven sent and I consider this a blessing a lot of people around me keep asking why I'm better as if it's all to do with a state of mind kinda thing, I've had fluctuations in health since I was 19 and now I'm
42 - I do think this is Lupus, with Neuro stuff thrown in - the process it takes to get any help is a very long slow drawn out process and the suffering we have to go through beggars belief, I truly thought I was for it at one point - I'm still prepared to fight but not sure which direction to go in, so find myself waiting for results and 7 month waits to see consultant!! I would appreciate any advice - do I just bite the bullet and ask to be refered to St Thomas?? Sorry for long winded reply. Thank you so much for your comment xx Jo
Hi Jo. I really feel for you. I was fortunate enough to be diagnosed at my first appointment back in 2001 but I had experienced intermittent symptoms of what I thought was RA for some 10 years before then.
When things started going pear-shaped in 2012, I was 100% convinced that there was more than 'just' Lupus at work. After a year of uncertainty, my Rheumatologist decided to refer me to the Lupus unit at City Hosp in Birmingham. I really, really did not want really it I'm glad that I did. I took the iPad with photos which they were interested in, they did stacks of blood tests for vitamin deficiencies, immunology and so much else. The approach was very thorough which I was not used to but the tests revealed very little. What I hadn't realised is that they were actually questioning my dx of autoimmune disease due to my lack of antibodies etc. The Prof was able to draw on her many years of experience and expertise to arrive at her diagnosis (low C3C4 helped). I really felt that she had seen it all and I noticed that she did not dwell on events that had occurred previously but rather on what is currently happening and what could happen in the future - this was a different approach from my local Rheumatologist but I can see the sense.
Certainly you should pester for referral to someone with a great deal of experience and also someone who will treat your problems rather than what they think your problems should or should not be. The risk of going privately is that the testing is extensive and probably very costly. With symptoms like yours, I think you should push hard for referral on the NHS but remember that there are other excellent Rheumatology units around the UK - my waiting time was just 3 or 4 weeks from receipt of referral letter and I have been seen 3 monthly ever since.
Sorry for the rambling, hope something I have said is helpful! C x
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The lack of bladder control and the need to wee update 
My employer is great!
Just wanted to have a moan :)
Are you 18 or older and diagnosed with a skin condition by a doctor?
