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I feel so alone no one understands me

Hi, here goes, I feel so desperate never thought I would do this. I havent been myself for almost 4 years now, took gp 3.5 to send me to neurologist. I am 49 but feel like I have the body of a 99 year old. I have had full spine mri, not in one go I might add, 3 seperately ones which I thought ridiculous, why not do it altogether, mri head, spine has cord compression in two places, severe lower facet joint arthritis and multi level degenerative disc disease, spinal surgeon said he would not treat me as other symptoms I had suggested something going on higher up in body, eg brain, so referred back to neurologist who I had already seen and he did nothing before, this time he sent me for mri head which showed some abnormalities, i can’t get my head round all those big words, the last sentence on reports suggests it could be a demyelinating disease or small vessel disease of brain. I really struggle with walking and it’s so painful, i walk at snails pace, got a mobility scooter now but hate it, used it twice, can’t come to terms with it, have pain in neck and back, my legs and arms feel so weak all the time, extreme fatigue like nothing I can explain, depression, uncontrollable crying, spasms, they start in legs then my whole body goes stiff, rigid, it hurts, very itchy feet and hands and back, my left foot has changed shape, excruciating pain around ankle, am seeing a foot expert next week 18th, can’t remember his job title, can’t remember lots of things, forget dogs names, names of silly things like the washing machine etc, just can’t find the words so everything is called “thingy”, even called my partner by the wrong name, he lovely by the way, never complains or moans at me even though all this must be so difficult for him, he hasn’t touched me physically for months and months but we won’t go there for now, I am not the woman he met and fell in love with, we have lived together five years, I have a daughter who is 21 in a couple of months and she wants her old mum back. I saw my neurologist yesterday because it’s been 2 weeks since my lumbar puncture, negative results but oligoclonal bands result not back yet, I have read on net that these are only 50% accurate so what’s the point, I spent 35 minutes with my neurologist yesterday listening to him read my notes, he did not know he had already sent me for brain mri, he started writing out document for blood tests which I had to point out to him he had already done, it was a complete waste of time, this has been a bad week with uncontrollable crying, i told him this and he just said why are you crying, i couldn’t believe him, I know they see alot of patients but I have seen him 6 times now and would expect him to remember something about me. Giving him till next Wednesday to contact me, he might refer me to a professor at Qmc who is an expert in MS, i will be insisting I am referred even if oligoclonal bands comes back negative. I feel like I am going round and round in circles and getting nowhere, it’s so frustrating. Life is very frustrating, can’t do anything I used to do without it being a major thingy. Haven’t worked for 6 months now, driving is too painful now, just want someone to understand me and help me. God knows what you must thing if you have just read all this, sorry it’s so long. Sorry.

So sorry that life is putting you through the wringer like this.

I don’t know much about LPs, but my dim recollection of my own is that the oligoclonal bands thing is at the core of what they are looking for in relation to MS/not MS, so you have not yet reached the end of the line on that one - there might be more information to come one way or the other. I hope that you soon get some much-needed clarity about what is going on.

Hang on in there!

Alison

I am so sorry to hear your going through so much, I am in limboland myself and I can relate to your frustration and anguish, I really hope you get some answers soon, it’s the not knowing what is happening to your body that is the hard bit.

I feel so frustrated and helpless it makes me irritated.

Please postagain if and when you need to, I thing I am learning is it is better to talk and share rather than bottle things up.

Wishing you all the best and truly hope you get some answers soon

Heidi x x x x hugs x

Hello hun.

This is the best place to come and let all your feelings out. Many of us have been where you are now…albeit with a maybe different set of symptoms, but frightening just the same.

As for your neuro being muddled by preparing for the same tests to be done…well hes not being professional.....yes, he will have many other patients, but thats no excuse…

I spent many, many years in limbo and was also wrongly diagnosed with MS. So many neurological conditions do mimic MS and that doesn`t help.

My condition is incurable and virtually untreatable. But I cope with a great team of carers and medical help.

As for your scooter…please try not to hate it…it is a tool to help keep you safe when out and about. It would be a worse world for you, if you had to rely on legs which can buckle and ache so much.

I do have a tip someone gave me at the start of my investigations. I know what you are going through is REALLY worrying and upsetting, but if you can keep your tears out of the doctors and neuros office, they will take you more seriously and not put you down as neurotic.

I`m sorry f this sounds harsh…I dont mean it that way…just trying to offer you advice, which helped me.

I asked to be referred to an MS specialist and was refused, as I had voiced my discontent at being left iin limbo and mis-diagnosed. So just be careful there love. The NHS do stick together when challenged!

love Pollyxx

Not sure if I’m using this right ??!!

i was diagnosed two months ago and can’t believe how quick things are taking over.

im knackered all the time , the numbness in my legs has gone so I’m assuming that’s good. But now I have chronic back pain , I’m 45 and feel 85 !!! I work full time and hate the uncertainty of not knowing when it will all get too much. I feel lonely , I have a husband and three kids but how can they possibly know how I feel. I panic when I see people in wheelchairs, I don’t want that . I had a life plan : be there for my kids , shopping with my daughter, girly days out. Be the hands on granny my kids never had , live life to the full ! But someone decided I didn’t deserve that ! No one medical can give me answers because "every case is different ".

someone turn the light back on and make me smile !!