Hello to all reading this post,
I am writing on behalf of my sister in law, who is very very poorly. She has been diagionised with m.e. for a year. But more recently has had two episodes, of lsevere legs tremors, and feet turned in. Unable to use her legs, no feeling in legs or control over legs. G.P not being very helpful. Any advice on what to do would be so so helpful at this time please …
When you say episodes, how long did they last? And was it long enough to get to A&E while it was still happening (so it could be witnessed by a medic) - because that’s the way to bypass the GP in the short term at least. Generally, it is pretty pointless to try and work with a GP who is disinterested or disbelieving. So, if possible, try and find a new GP - ideally one with some experience of neurology (although these are not terribly common). I’m afraid I don’t know very much about ME other than it is a recognised neurological condition that can be very serious, but that is very poorly understood. I don’t know if what you describe is a symptom of ME, but it could be. Is your sister-in-law under a neurologist? If yes, then she should call his/her secretary and ask for help. If no, then she should ask her GP for a referral to one, preferably one who specialises in ME. I would imagine that the GP would find him/herself in a tricky situation if they refused treatment AND a referral to someone with a recognised neurological condition with new symptoms that the GP was not qualified to treat. If all else fails, contact PALS. They may be able to help. Good luck! Karen x
Hi helpforcaz
Karen’s advice is always good. As she has said ME is a neurological condition - my husband has had it for 20 years and we’ve found The Hummingfords’ Foundation to be a great help - www.hfme.org
ME has a lot in common with MS - I was amazed at how well my husband understood the symptons I was struggling to explain before my dx of RRMS a couple of weeks ago! But unfortunately ME is NOT well understood by doctors.
I hope the above site is helpful and that you are soon able to get some answers for your sister in law.
Best wishes
Hazel