Limbo land

Hi I’m a 37 mum of 2 & I don’t really know how to start this message, without sounding like I’m rambling, but here goes. In February 2012 I had a spasm in my back that lasted around 6 weeks, with this I had a numb right calf. I had physio, orthopaedic apps, blood tests. Nothing in particular was found & so I was left to go about my daily life, not understanding what the heck was causing the numb leg. I had no other symptoms till August this year, when my back started up with avengence, I was struggling to drive & got signed off work. I haven’t been to work since, symptoms are and have been coming quite thick and fast since. My right leg has given way on me a few times, the numbness in my right leg has gone down to my toes and up to my right arm. I have pins & needles type of feeling in both. My left side seems to have kicked in now too, severe stabbing pains in my left thigh a couple of weeks ago that made me cry they hurt so much. Have had similar feelings in both arms since! Also a tingly tongue, which is most bizarre, makes eating no fun! Saw a neurologist early September, MRI early October, neurosurgeon early November, nerve conduction tests today. Currently I have all the problems I stated above which get worse on walking, sitting or standing. I can barely stand longer than 5 mins without pain. Everything I get, I look up and it brings up MS, yet the only hint that that’s what it is was from the neurologist who suggested central nervous system problem. I’m hypothyroid too btw! The not saying anything & the amount of time that’s gone by is getting to me now, just wanted to talk to someone who might understand and wondered if you could offer words of advice. My mum, who has been brilliant just wants a diagnoses, I know how long things can take, but am getting concerned that its all in my mind. I know it’s not but because we don’t no anything yet, it’s hard!! Told you I would ramble, but please help. Thanku :-))

Hi sara,

I am 43 and also a mum of 2.

I do sympathise with you as I have been having wierd symptoms on and off for the last 15 or so years and after being tested for this that and the other and comming up with nothing you do start to think that maybe it is all in your mind. I’m waiting on results from mri which I had 3 weeks ago. You will get there in the end no matter how long it takes. Keep your chin up and stay strong. X

Welcome to the site, its a wonderful place to share whats happening to you and see if others are feeling the same. For some, diagnosis is quick for others it takes months or years and some get no diagnosis. All I can say is take it slowly in small chunks and see how your tests go. Good luck,

Catherine xx

Welcome and sorry that you are having such a scary time. You say you had an MRI in October and a neurologist appointment in November. Didn’t they discuss the results of the MRI with you? I assume they were inconclusive if not but they should have explained this to you. At least they are taking you seriously and trying to find a cause for your symptoms. The wait is really horrible (I just felt abandoned at home having been discharged from hospital so I really do sympathise). I wish you well in getting a diagnosis whatever it turns out to be.

Thank you all so much for taking the time to read and reply to my post. Just reading the replies this morning makes me realise I’m not alone & at last I have people to talk to who are in similar situations. It’s the amount of time that its taking that’s really getting me down, I’m concerned as to what’s going to happen after work stops paying sick pay, does anyone know of any help or point me in a direction? As far as my MRI results go (& I forgot to write that last night, I rambled on so long & forgot vital pieces of info!!?) my neurologist said “there is prominent disc osteophyte complex at T7-8 which is causing a 30% anterior indentation of the spinal cord, there is adequate csf posteriorally. There is a smaller disc complex shown at T5-6 with indentation of the cord at that level”. He referred me to a neurosurgeon who said that surgery would be a massive operation & that it would not help my other symptoms. I have a tremor on exertion, clonus in my right foot, decreased sensation in right foot, leg and hand. Since seeing him in September & since my MRI in October I have had similar sensations in my left side, with stabbing pains in both arms & legs. They make me jerk, they are that painful. I’m getting worse each month that goes by. I’m not hiding in a hole, I’m trying to continue as normal, even though it affects daily life. But without knowing whats actually going on I feel like a fake!!. It’s not like I have a plaster on and can say “look”. Sorry for going on, I feel like at last I have an avenue to vent on. Thank you so much for reading. Xx