Hi all. I'm 35 & was born with Raynaunds. I was told as a child I have hypermobility & too much collegan. When I wass 18 my left hand pinky & ring finger knuckles dropped & they were splinted but caused muscle wastage so now they are just left.....I can't make a fist & the same thing is happening now to my index finger (luckily I'm right handed!) When I was 21 I was told I had Fibromyalgia & ended up walking with crutches. In 2012 I collapsed at work & spent 3 weeks in hospital. I was having jerks & unconcious spells thst last from 10 mins to 1 hour with no warning - they have been labelled as non epelieptic attacks & I have been told they don't know the cause & there is no treatment. I had IH but that has now been rectifed with meds & my CFS pressure is normal.
I have all these symptoms Neurology can't explain......I get a really red right cheek like ive been slapped, either side of my nose my skin is often mottled red. My heart bpm increases greatly on movement (I have not got POTs) I have noisey ears, my arms feel wet, my arm pits swell, my top 2 ribs often are painful, it takes me ages to urinate & a lot of concentration! Plus it's often quite thick, dark & smells even though I drink lots of water all day. A dip test is always normal. My hands & feet get different rashes but I have Raynaunds, I get red raised wheels on my lower legs & chest, I'm v.light sensitive, suffer severe migraines for days, in bed I am so hot inside but don't have a temperature & in bed & in the day I sweat loads. Suffer with IBS. My blood tests always have a high CRP level since a child, I am often anemic, I have low vit D & Calcium even though take supplememts.
Sorry this is a essay!!!! If any of this makes any sense to anyone I would really apreciate your comments & advice.
Hello and welcome. I'm afraid we can't give medical advice here as not qualified. But with the symptoms you describe and your history I don't think I would be happy to accept a diagnosis of Fibromyalgia either. Have you seen a rheumatolgist yet? If not I'd push hard to see one citing your high CRP (GPs tend to need bloods to be skewed in order to refer) and skin symptoms, anaemia and hypermobility. I have a Lupus related autoimmune disease called Sjögren's, although I was originally misdiagnosed with RA for five years. I too have Raynauds and neurological features similar to many of those you describe.
I'm guessing your autoantibodies have all been checked and vitamin B12 levels too? If not it would be well worth pushing your GP for these to be run asap. Best of luck and do let us know how you get on. Twitchy x
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Hi. Thanks for your reply. Yes my anti bodies & B12 have been checked & all OK.
I don't want to appear like I'm obessing for a diagnosis so wanted to see if anyone else had the same or similar symptoms. I only see a Neuro Consultant at the moment.
Do you suffer from any dizziness, faints or blackouts?
I didn't realise there were different types of Lupus. I know my heart, Liver & Kidneys are fine & had an MRI in Feb, so it isn't affecting my organs.
Thanks Twitchy.
Ab x
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You're welcome. I believe there is a type of Lupus that affects the brain yes - CNS Lupus I think it's called. Maybe others will come on and tell you. I don't have Lupus but neuro symptoms are quite common with my disease, Sjögren's. I don't have faints or black outs - just neuropathy as the disease affects my tiny nerve fibres everywhere most of all.
I hope that you get more responses. Lupus and all these connective tissue diseases can and do present uniquely in every one of us so can be very hard to diagnose. Having negative antibodies doesn't rule it out but it just makes it more unlikely.
Have you had a brain MRI or lumbar puncture yet to exclude MS or MG?
I'm sorry to hear that you have been experiencing all of these symptoms and you are not sure whether they are adequately explained by your current diagnoses. Have you discussed your concerns with your doctor? Have they done any additional tests to look for lupus antibodies or any other potential causes?
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