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GBS/CIDP
I have CIDP. Is there anyone who has CIDP or GBS. Thinking of moving to wales
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Can you drive safely with Fluctuating Conditions?
Hi all, I'm wondering when it comes to fluctuating conditions what the laws are on driving? They all seem pretty black and white. If you have exactly X all the time then yes/no. What if you have a fluctuating condition? Is it all down to common sense? Thanks in advance, Jenny
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Cluster Headaches, brain tumour removal, pip going to tribunal
Is there any other members with cluster headaches been through the same and can help me with my anxiety please. 31 weeks I have been waiting
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Anyone have Hemidystonia Hemiatrophy Syndrome?
Hi! Anyone have Hemidystonia Hemiatrophy Syndrome? It’s a rare form of Dystonia and there is little information about it.
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mirror movement disorder
Hi everyone. I have always had problems with my left hand mimicking my right hand. I always thought it must be a symptom of my hydrochephalus and didn't think anymore about it. For some reason I decided to research it and found out that it was something called mirror movement disorder and was actually quite rare! Mine…
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Trisomy x syndrome
Does anyone know about this
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Cauda equina syndrome
I live with cauda equina syndrome I just wondered how many people on here do too? I have had it for 8 years now and would like to connect with others who have been through the same thing
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neuralgia
im curently have an episode of neurlaga in my face can anyone tell if if this is caused by my spinal stenosis in my neck thanks
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Rare or what ?
Has anyone heard of macrocytosis?
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Some noises drive me to anger
It's called misophonia but dont think a lot is known about it? Sounds like chewing/slurping/sucking and throat clearing, rustling like someone reading a newspaper, clicking, and other small sounds can make me angry to the point of rage if I cant get away. I dont know what to do about it, but was just wondering if I should…
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My prototype adapted weighted spoon I've made today.
I was getting so frustrated eating with my tremors, especially soup, so i made this weighted spoon today.. I got approx 30 one pence coins, taped them to the underneath of my spoon handle, covered them in polymer clay and baked the whole spoon in the oven for an hour for the clay to harden. It works an absolute treat, it…
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Choices?
It is strange to think that sometimes it can take many years to make sensible choices and to avoid making mistakes and I guess I made a very large one when my problems first surfaced in 2003. I was in a relationship at the time but although the specialists figured cervical spine surgery would cure everything during the 14…
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Rare chromosome disorder
anyone have a child with a rare chromosome disorder?
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CVS and applying for PIP
Hi, My son who is now 17 has had cvs for around eight years now after our hospital constantly diagnosing him for two years previous with "rumbling appendix", so was then referred to a gastro specialist. Now years later and still having very frequent attacks but has developed ibd which is being investigated further, my…
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new investigations
After 20 years of having serious mobility issues I am going into hospital for tests. I was told I had PPMS in 2003......in 2011 I was told it was HSP.......a few years after that HSP was found to be highly unlikely after genetic testing. I`m going into The Walton Centre in Liverpool. It is the only centre for neurosciences…
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have behcets syndrome a rare connective tissue disease/ vasculitus
Hi my name is Jessica and I have behcets syndrome a rare connective tissue disease/ vasculitus which has effected my nervous system
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Combination of extremely tight muscles, weak muscles, loose SI joins and bi-lateral hip replacements
HI all, first off I'm excited a community like this exists out there. I'm hoping it will help me find some answers. I'm 37 y/o male and have been battling this since I was 18. All my life every doctor, PT, chiro, LMT and everyone else I've seen has had different opinions and approaches and I've yet to find relief. I've had…
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Please help
Has anyone heard of this set of symptoms? It's been 3 months, doctors have thrown their hands in the air. So it started with severe bloating and abdominal pain, it happened suddenly. I had a CRP of 300, everything else including WBC count normal. Bloating has gone down but something just feel off with my abdomen. I have…
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Sharp pains
I have sharp shooting pains all over that are progressively getting worse. Sometimes the pains burn, sometimes it feels like water is running on me. I have light numbness and tingling and randomly have no bladder control. The pain is from head to toe. I’ve had MRIs of my stomach, back and brain but the doctors can’t find…
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Spinal cord injury
Hi my husband has got a spinal cord injury which has left him tetrapligic . We live in suffolk and struggle with help as no one in this area seem to no much about his disability. We love for him to have some extra rehabilitation but there doesnt seem to be any in our area.
