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Waiting for official diagnosis living in limbo land!

Hi there everyone. I’m Rose I’m 24 and I am awaiting an official diagnosis of ms! I lost all sensation and use of my hands/upper body 3 weeks ago along with loss of coordination, balance and double vision. I have had MRI scan which results showed ‘inflammation on my brain’ and that ‘my nerve signals are not working correctly’. I was seen by a neurologist whilst in hospital who told me that they are pretty certain i have ms but I am waiting for my lumbar puncture results and an appointment with an ms specialist. I had an episode similar when I was pregnant 2 years ago again loss of sensation but in my legs. I have been sent home from hospital with just a leaflet. I am really struggling with fatigue and I can not walk very far. My hands are still not back to normal very weak and still have the numb/tingling sensation. My husband is not coping well and doesn’t really know a lot about ms!! I have lots of questions which I know I have to wait for my appointment to get all the answers, but was looking for a bit of support. Thank you

I’m in a similar situation, having been off work and unable to plan! It’s driving me nuts. I lost feeling and coordination in my lower legs then left hand and now as those reduce (or I get used to it) I have developed tightness and loss of feeling around my torso. It’s no fun, I don’t feel like I can give my work an answer, although they have been really good. Even planning a holiday seems out of the question in case I end up at the bottom of the pile again. Make a list of questions, my neuro was unhelpful and I was panicky, but I won’t let that happen again. If it is any consolation I am doing more and more; I will not give up!

I feel your pain. I am still waiting to hear. It has been 8 weeks now and although my work have been great, I need to plan for the future. Even a holiday seems out of the question. I had to call 111 on Friday because of crushing chest pain ~(maybe its the hug) the sent me to the GP who said “I think you hav side strain” to which I started crying, as if he hadn’t seen my notes. He prescribed really low dose amitriptyline which has not made a difference yet. Neither do painkillers. I keep dropping stuff and I can walk like a gangster or a duck, but not normally! It has taken 6 weeks for me to build up my walking and they signed me off to seperate symptoms of exhaustion/anxiety from neurological ones. If it isn’t MS, it is something affecting my life. A total lack of support and information, I have had to chase all the way.

have been told by 2 doctors i have ms but my nuro has said she is not ruling it out had tests done l/p mri x 3 told have plaques on spinal cord and 1 on brain next app is 7 months away got to go for evoke in between dont know out come of l/p not sure if results were back on app all she kept saying was my lesions were old so they are old does that mean nothing is wrong not bothering with the evoke now and not going back to a nuro who only grunts and repeats herself been living with symptoms long anoth without all this so just going to get on with it my own way

I am lucky in the sense that I am a full time mommy so I haven’t had the worry of work. I feel like I am getting better everyday but still have many symptoms it’s just extremely hard as I want to know and plan for mine and my families future. the week I came out of hospital was extremely hard trying to look after my 2 year old but luckily I have a really supportive family who was there 24/7 for me. I have rang the neuro twice and my gp is chasing up my appointment which was supposedly an urgent referral!! Frustrated sing the word lol!! Yes I have thought about making a list of questions for when I go. It’s nice to chat with people who understand fully lol.

this is so confusing what does the nuro mean when she says they are old plaques tried looking up but nothing on old plaques having new feelings but have no new lesions so does it mean when you have new feelings but no new lesions the old ones still give you more gipp had a mri done since was told lesions are old so why am i getting new feelings help