Confused

[Oliveoi]

Hi all, I’m new here. Basically I’ve struggled for years with different ailments and was treated with so many different medications, my gps got fed up with me. Despite many obvious problems throughout my life I’ve always pushed on. My eldest daughter I nearly lost when I was pregnant. I was basically bed ridden to keep her. Then throughout my relationship I miscarried 8 pregnancies to spontaneous abortion during the ten years of trying to have another baby. Cut a long story short, my relationship ended. After 7 years In my new relationship i conceived my son with the help of medical assistance. I then conceived my daughter who was a twin but lost her twin then the same thing happened again with my youngest who was also a twin and lost his twin. I was hospitalised for both pregnancies. I’ve suffered with skin problems, face and body. Shortness of breath, muscle and joint pain for years. It got so bad that I was forever on sick leave. I had serious fatigue, foggy brains, constantly sweating. A total mess. It got so bad I would wear headscarves because my arms aches so bad I couldn’t even comb my hair. When it became apparent that I couldn’t teach lessons plans anymore without making serious decisions my colleagues mocked me. I went back to my Gp and insisted on a Lupus test. It came back positive. I was referred to a rheumatologist who told me that my R o was positive yet he diagnosed me with undifferentiated mixed connective tissue disease and not Lupus. In 2006 I was diagnosed with spondylosis of the spine. I had a spinal fusion but it did not stop there. I have Reynard syndrome, sjedgens syndrome, chronic inflammation of the guts, low grade fever, myelopathy, degenerative spinal and cervical disease the list goes on. Since 2014 I’ve been treated with hydroxychloroquine, prednisolone and pregablin. Prior to that quinine, amlodopine, citalipram, esemeprozole, etc. Basically I’m allergic to NSAID. So it is difficult to cope. I’m just confused about my diagnosis and long term treatment. Any suggestions would be beneficial to me. ❤️ p.s apologies for spelling that’s another one of my issues lol

[whisperit]

Hello Oliveoi

You are not the only one who is confused! The lupus-type conditions are many and varies in their presentations, and assigning a particular diagnostic label to any one is quite tricky. There *are* guidelines to help clinicians decide when it qualifies as lupus (SLE), but it is important to understand that other, related conditions can be equally serious - even if no-one has ever heard of them!

My own symptoms meet the criteria for a lupus diagnosis, but over the past 3 years, I have been described by clinicians as having, "Mixed Connective Tissue Disease", "Overlap Syndrome" and "Undifferentiated Connective Tissue Disease". Last Friday, I saw a neurologist who described it as simply "Connective Tissue Disease".

I think the point is that all these labels describe a broadly similar disease process - one where our immune system is attacking a range of tissue types throughout the body. It seems that each one of us tends to have our own individual pattern of self-immunity. Some people have a fairly stable presentation, but we are all liable to change. For me, the intial target of my immune system was my lungs. Now it seems to be a mix of other tissues.

The most important thing is that once it's been recognised that you have a systemic auto-immune condition - whatever the label - you should be monitored and treated appropriately. And the good thing is that for most of them, the treatment and monitoring is broadly the same. Long term treatment with HCQ and steroids is typical for lupus, UCTD, MCTD and other diagnoses, so it sounds like you are likely on an appropriate regime.

That's all my personal take on it. But of course, you need to feel confident in your own clinicians. There is no shame in feeling confused about all this - it really is a confusing situation, and you've had a lot to deal with on top of "simple" auto-immunity. So do speak to your clinicians to get some clarity - and keep posting and reading here! x

[Oliveoi in reply to whisperit]

Thank you for responding. I’ve had my gallbladder removed which led to them finding a cyst on my pancreas. I’m now under the care of a Hemotology specialists neurologist has put me on pregabalin. I struggle to walk so I get wheeled around. I wear a hearing aid on my left ear and am now being told I’m gonna need one for my other ear. I struggle to hold my neck up. But my biggest battle is that despite my diagnosis and meds’ my family and outsiders say I don’t look sick. After 4 years receiving PIP standard rate I lost my pip because they said I don’t look sick.

[whisperit in reply to Oliveoi]

Oh dear, it seems a lot of people here have struggled to get PIP. Going to appeal seems to be the norm. there are lots of posts here telling of people's experiences - including some of success! Hope things improve for you soon anyway x

[Oliveoi in reply to whisperit]

Hi whisperit and thanks. Yes I’m currently waiting for a tribunal hearing date. It’s been 9 months now .

[eekt]

SO sorry to hear of you many losses Oliveoi XOX

The disease labels don't matter as long as your GP and consultants are dealing with new manifestations as they come along....autoimmunity is shifting sands....hopefully you have supportive and empathic doctors....if not, move on

It beggars belief you've been denied PIP...rather than taking on the burden of re-applying or appealing yourself try CAB (or your council might have a Welfare Officer) to do the ground work for you

Wishing you all the best. Stay strong xxx

[Oliveoi in reply to eekt]

Thanks x just waiting for a date now