Hi there I'm due to see a neurologist again soon so I'm trying to gather some information before I do. I have suffered with a lot of paraesthesias, muscle spasms, twitching and strange fizzing sensations for years. I have had numerous tests ie nerve function Ecg, emg,brain MRI but they have found nothing so have attributed it to anxiety. Since then I've been diagnosed with orthostatic hypotension and I now have a blepharospasm since early February this year. It's definitely not due to anxiety as it's often triggered by movement, sunlight, sneezing etc. I also have a lot of nerve pain and trouble with my feet burning. I personally feel the problems stem from my nervous system but wanted to know if anyone else has experienced similar symptoms and what the outcome was.
Many thanks
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shaunalouise26
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Shaunalouise I have suffered a lot of these symptoms for over 20 years .I had a lumber puncture to rule out MS also had MRI scan years ago. I was eventually told I had chronic faitgue syndrome /fybromyalgia and unfortuantley was never referred to a neurologist despite repeated requests .Over the years I have suffered from chronic pain , muscle stiffening , muscle twitching , parasthesia all over on and off, strange sensations on muscles ,eye disturbances and chronic pain in mouth and pain in soles of feet . I recently had positive blood test for Crest syndrome for which I await appointment with rheumatology.I hope they get to bottom of it all soon for you Kathy
Thanks for your reply. It's horrible isn't it, like you're not in control of your own body. I'm also positive for a lot of scleroderma antibodies and lupus symptoms as well x
It is desperate how long have you suffered all these symptoms have you had any diagnosis yet ?I first had many of these symptoms when I was in my 20s I am now 61.
I was at my wits end I thought I had a brain tumour or something.I was referred to rheumatologist and had written all symptoms down I was abruptly dismissed and told there,s 33 symptoms on this list there is no such illness or disease with all these symptoms and given a prescriptions for anti depressants . I gradually got better over a 2 year period and the symptoms were more a nuisance than anything once
It is desperate how long have you suffered all these symptoms have you had any diagnosis yet ?I first had many of these symptoms when I was in my 20s I am now 61.
I was at my wits end I thought I had a brain tumour or something.I was referred to rheumatologist and had written all symptoms down I was abruptly dismissed and told there,s 33 symptoms on this list there is no such illness or disease with all these symptoms and given a prescriptions for anti depressants . I gradually got better over a 2 year period and the symptoms were more a nuisance than anything .I then suffered a terrible relapse in my 30's after a really bad bout of flu that when I was told it was chronic /fatigue fybro that went on for years then eventually waxed and wained then when I was 48 back with a bang and never been right since
, last 2 years have just gotten worse I also suffer high BP and under active thyriod was tested for lupus years ago but negative take care hope things are resolved for yu sooner rather than later Kathy
About 5 years it all kicked off for me but was having symptoms for a long time before. I had really bad rashes on my hands they were awful, photosensitivity, mouth ulcers, joint pains, all the twitching started at the same time I had a retinal vascular occlusion, then uveitis and ocular hypertension. Mine can be just twitching along then I have periods where it gets really bad like a flare up and it affects my vision and everything. I initially thought brain tumour as well or MS but that was ruled out. My current diagnosis is UCTD but I have so many scleroderma auto antibodies it's untrue also tested positive for polymyositis. My mum has lupus only diagnosed last year. I knew she had it but she was always negative Ana then bam a year ago her rashes from the sun were really bad and Ana came back really high positive. Since then she has had vasculitis and stage 3 kidney failure. My daughter going through this as well since she was 7 she's now 12. Lots of symptoms but no diagnosis yet but she is being watched closely by paediatrician and Alder Hey rhuemy x
so sorry to are going through all that with your mum and daughter as well this is surely not helping you. I am not familiar with UCTD? There are so many positive and inspirational folk on here to chat to which really helps .I frequently have a butterfly rash on cheeks but more recently get sporadic red lumps on face and legs take care and I am always here for a chat xx
And you. It stands for undifferentiated connective tissue disease which basically means that I have symptoms and signs of a few connective tissue diseases but not enough to define one perticular diagnosis. I am on hydroxychloraquine which has helped my symptoms a lot. Same to you also xxx
well that good waiting for rheumatology appointment hopefully get some medication for crest when they finally confirm diagnosis which my gp say is imminent let me know how you go neurology good luck and take care xx
Thanks for your reply. It's horrible isn't it, like you're not in control of your own body. I'm also positive for a lot of scleroderma antibodies and lupus symptoms as well x
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