Hi. It seems that this sort of thing has been posted Many times but I am desperate for some help, advice and support. My husband ended up in a and e last June with numbness and tingling and couldn’t really move his arm and leg. They did an MRI scan and all the neurological reflex tests. He also had loads of blood tests. At the time all tests were clear and over time the neurologist has just diagnosed an inflammation of nerves and said would most likely pass. He did seem to improve for a time but since Xmas he has been feeling it all again but this time in both sides of his body. His neurologist then passed him over to rheumatology where he had a ct scan of his thoratic spine as they suspected ankylosing spondylitis. This never rang true as he didn’t get severe pain in his spine. Anyway the test ws clear. Week before last he had some sort of attack when he had to lie down and the he couldn’t move at all for about an hr. Then the next day was really bad he kept having these attacks where he would have to sit or lie down otherwise he would fall over then he would sort of ‘fade out’, He’s cannot communicate very we’ll and is just out of it for a time. He says he kind of knows what’s going on but his brain does not engage quick enough for normal reaction and thoughts. He also goes quite limp and cannot move his limbs. After an horrendous 5 days of no one helping us; gp, a and e, out of hrs we finally managed to get hold of his neurologist. He admitted him to hospital straight away. We were very relieved. They ‘observed’ him for a few days and dud some blood tests. He was then in the middle of doing a 24hr urine sample (for copper, I believe) and his neurologist came along (who he hadn’t actually seen the whole time he was there ) and told him they couldn’t find anything wrong, they weren’t going to do any further tests and that it may be exhaustion!! He was discharged and told to go back to the gp. I was astounded that they didn’t do any further tests and in the meantime we are at Home and he still having these attacks He’s extremely tired. I have two very young kids and there is no way he would drive and go back to Work in this state. It feels like we are back go square one. I’m not a Dr but I am convinced this could be MS but we are no were further to knowing. I would really appreciate your though on his symptoms and also should we be pushing for further tests at this stage. Thanks.
Forgot to say his other symptoms: Numbness in face Loss of balance Trouble picking up and putting down things (on and off) Fatigue Burning sensation in legs Shooting pains or constant pain that moves around. Vit D deficiency (taking high supplements )
Hi I understand your agony and you are not alone. You need to be very strong and start to deal with the situation. Time is very precious in terms of illness. So please do not hesitate to go to your GP as many times you want to talk about the symptoms. Pressure your GP for any specialist appointments. Please ring 999 and take him to hospital and admit him as many times you need if these symptoms coming back and do not walk away from hospital unless your husband feels 100% alright and you got your answers for your husbands issue. Do not let them simply discharge your husband from hospital until full investigation is finished and they give you definite answers even your husband temporarily feels bit better. You have to take control of the NHS service which is there for YOU !!! and don’t let them fob you off. Ask questions. Ask help from friends and family. Act promptly . Thnx
Oh dear, how worrying all this is for you!
I had typcal PPMS symtoms for years, but no tests ever showed proof…and I had most of the regular tests twice…MRI 4 times!
16 years on, they dont know why I cant walk and my lower half is not much good!
I`ve been diagnosed with spastic paraparesis/cause unknown.
I think the only thing you can do is go back to the GP.
sorry I cant say anything better.
luv Pollx
Thanks for your comments. He saw a very good gp (a locum) this morning who was also astounded that he has been discharged by neurology and completely understands where we are coming from. He has advised to keep our rheumatology appointment (follow up from before) and see What they say. But to keep in touch with the gp and if necessary be re referred. We will definitely be doing this and asking for second opinions. It’s all so crazy and trying not too get too bogged down with it all at the moment.