New on Here

[John0665]

Bit of background, my wife has been ill for many years (15 years plus) with all sorts of illnesses, with repeated hospital admissions which nobody really was getting to the bottom of why she kept getting ill, this culminated in a cardiac arrest 12 months ago.

In terms of a journey to a diagnosis medically the low point was about 4 years ago and fighting the medical system to get an earlier incorrect diagnosis of Munchausen's removed from her medical notes which was added a few years prior by a GP who wanted he ‘off his books’ because she kept turning with different problems and was deemed a nuisance.

More recently better service from the medical profession, she has been seen a few times now by a Rheumatologist at the Regional Centre for Rheumatology rather than the local hospital and now has a diagnosis of undifferentiated mixed connective tissue disease.

At the moment she not particularly well after flare up of leg ulcers and cellulitis requiring a hospital admission last month. She also is suffering from swallowing problems due to achalasia and we are awaiting treatment for that, this is stopping the Rheumatologist from trying other things like immuno suppressants and the low dose prednisolone she is on is not helping with recovering from infections a ulcers.

So I am here to learn more and work out how better I can support her.

[Hidden]

Hi and welcome. For all she’s been very unlucky - your wife at least has the advantage of having a kind and very supportive husband.

I can’t answer your questions but hopefully others will. I just wanted to respond. The part about Munchausen’s is absolutely shocking. I had a misdiagnosis on my records of Scurvy for a while but finally got someone to remove it. But Munchausens?

Hope your wife’s latest flare can be dampened. I haven’t been able to tolerate any immunesuppressant meds at all.

[Horsewhisper]

Hi John0665

I too am new to this site and have found just browsing through the posts and threads that are relevant to me, incredibly useful. There is a huge amount of knowledge and information on here that hopefully you’ll find re-assuring to read and provide useful guidance. For your wife to not be listened to for such a long period of time, must have been soul destroying for her and upsetting for you. And as for Munchausens, that GP should be reported to the GMC. He clearly wasn’t doing his job properly and meanwhile, your wife was suffering. At least she has a treatment plan now, so hopefully things should start to improve. Best wishes to you both on the continuing health journey.

[leslieliesel]

Munchausen...BALONEY !!...My Dr said I looked for the zebra in the herd of horses..Another one said I make a catastrophe when not necessary(that time it was a lump...which WAS breast cancer) hmmm...it got to the point where ,when asked at check ups, how I am, I say good enough( when really SO FATIGUED , and hurting joints, but who doesn't have that when 60 rolls around)....the only reason Lupus was Dx'd was because I had an AWFUL rash...tests were run and Lupus!! I had no idea..but certainly explains my symptoms, that I didn't complain about.......I am so sorry that your wife is in such a bad way now...it sounds like you are her rock!! My Best to you both Xx

[Chanpreet_Walia LUPUS UK]

Hi John0665,

Welcome to the LUPUS UK HealthUnlocked Community.

We offer a free information pack which you may like to download or request here lupusuk.org.uk/request-info...

The Lupus Encyclopaedia states that “UCTD is a common diagnosis for patients of rheumatologists. In fact, more people have UCTD than have SLE. If diagnosed with UCTD, you are not alone; 10% to 20% of all referrals to major medical centre rheumatologists initially have an undifferentiated connective tissue disease”.

To learn more about prednisolone, you can read our factsheet on medication at lupusuk.org.uk/wp-content/u...

We published a factsheet on lupus and the heart and lungs which you may like to read: lupusuk.org.uk/wp-content/u...

Please keep us updated, wishing you all the best.

[John0665]

Bit of an update from the last 3 months, diagnosis now from the Dermatologist of Vasculitis and referred back to the Rheumatologist. The ulcers continued to be a problem over the summer, with some of them healing up but new lesions appearing. One of the biggest issue we have had was managing dressing changes on 15 odd lesions with variable help/hindrance the from the local district nursing team. Last month she was seen again by Rheumatologist who agreed to bring her in on an urgent basis as an inpatient for treatment. We waited the best part of week, but no beds! During that week some of the lesions became infected and on advice from Rheumatology team and one of the better members of the local district nursing we were told to present at their A&E department. Treated with IV antibiotics plus IV hydrocortisone and in hospital for about 10 days, Rheumatologist has now said she has moderate to severe Mixed Connective Tissue Disease upgraded from mild. She has been back home a week now, today we start the first of 3 planned outpatient treatment with IV methylprednisolone, to be given very 7-10 days. Question in terms of side effects – what should I be expecting? and also how long does the treatment last for? – any experiences shared most welcome.