A Chronic Health Update – Neuro, rheumy and now Gastro too!

I realised that I haven’t done a health update in a little while so I thought I’d write a post to let you all know where I am – I won’t go in to too much back story, if you want to know what’s got me up to this point then you can see my previous posts, there’s one from August 2016 here, and one from September 2016, here. The post may get a bit long so I’ll write a quick conclusion towards the end just so that, if you don’t have long, you can hop down there and get a simpler version.

Since last seeing my Neurologist I have had nerve testing to, finally, rule out Myasthaenia Gravis and I was pleased to discover that they were clear, so I don’t have that. Previously ruling out MG meant that my neuro felt that it was Functional Neurological Disorder but he’s not as sure, now, and wants me to see whether or not my Rheumatologist believes there could neurological complications with what I potentially have there. I’m not sure if I’m going to be signed off from my neuro, but for  now I’m not seeing him but if the rheumy stuff doesn’t bring answers then I’ll go back and ask again.

Regardless of what’s happening – There’s good things in life

So, to my rheumy. I went to her with a variety of symptoms. The GP’s that I had seen felt that I might have Lupus plus I had already discussed the possibility of a condition called Sjogrens Syndrome with my regular GP.

My rheumy doesn’t think that I have Lupus but isn’t totally sure, most of my Lupus bloods came back clear but one set came back with a low positive. This isn’t enough to diagnose with, though, so it’s an unknown cause. My Sjogrens tests came back negative too. But, and here’s the kicker, you can have both of these conditions with negative bloods! My last letter states that I have the symptoms of Sjogrens despite the negative bloods.

As such my rheumy is sending me to a joint appointment with herself and a dermatologist who specialises in rheumatology. Between them they’re going to ascertain whether or not my rashes may be rheumatalogical and go from there.

During all of this testing a few other blood tests came back positive one of which points towards a condition called Antiphoshpolipid syndrome and an xray showed that I have a mild scoliosis of the lumbar spine. Antiphospholipid syndrome an autoimmune condition which causes the blood to clot and can cause a wide range of symptoms – Including neurological ones, including mini strokes. To finalise this diagnosis I need a second positive blood test, if I do have it then this condition may give a lot of answers all at once.

As if all of the rest of that wasn’t fun enough, I am off to see a new consultant in two weeks. I saw a GP today due to some stomach changes and some of them were of a nature that the GP felt it wise that I have an urgent referral to Gastroenterology so I am off there in two weeks (yup, that urgent, not at all concerning).

So, to conclude: I don’t have MG and neuro is deferring to rheumatologist for now. Rheumatologist is ruling out Lupus and Sjogrens at my next appointment and confirming my diagnosis of Antiphospholipid Syndrome (She’s also confirmed that I have fibromyalgia which I’ve had for years but always good to have it re-confirmed). I have a mild scoliosis of my lumbar spine and, finally, off to see a gastro consultant to discuss why my stomach is playing games too.

I’ll try not to leave it so long to post, next time, but it depends how much I learn and whether or not it’s of any potential interest. The whole thing is stressful, in a way I had never known before, especially now that I have to see gastroenterology urgently. But answers are good, the symptoms are there either way so knowing the cause can only be a good thing. 

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