So I had my neuro appointment and was told my scans were clear at the moment. He took more bloods, a urine sample and I’ve 2 do a 24hr urine collection. If they all come back clear I will b on a watch and wait for a year 2 c how things progress. He said he cant give me a definite not ms as sometimes the symptoms are there for a long time b4 any evidence on the mri. Feel a bit deflated as I was hoping for some answers 2day. Glad I guess that there isnt anything to see on my scans but feel like I’m still stuck taking pills and not knowing why the symptoms are happening. Anyway that’s my moan for the day!
Hi J3nnyo, all my mri results came back clear and I have been told by 2 neurologists at different hospitals that means ms has definitely been ruled out. I haven’t been told that the symptoms can be there a long time before anything shows up on mri. No wonder we people in limbo get confused and frustrated when we are all told different things. Hope you get answers soon.
Thanks for ur reply, I’m jst gonna get on with it and see what happens. Nothing else for it. My neurologist is very careful not to imply anything, like hes covering his bum. Who knows. For now I’m ms free so thank goodness. No offence to anyone.
Hi, you need to keep a diary of any significant symptoms. It can take a while before a diagnosis is forthcoming. I just hope it isn’t as long as mine took…22 years! Sorry that is VERY unusual.
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I’m keeping a wee note book of symptoms. I’ve read a lot on here and seen a lot of people saying it took years for a diagnosis. Obviously I will be delighted if it’s not ms but I just wish he could tell me what it is so I can deal with it. Meanwhile I’m not allowed coffee til sun morning til my 24hr urine collection is done. Day 1 and its killing me already haha
NO COFFEE shoot me now lol. what is he looking for with this 24 hour urine thing?
It does take years i had my first major symptom 2000, but didnt see a neuro until 2006 and it took 10 years after that and a ton of tests to be told i had progessive MS.
Just enjoy your life for now. If it is MS i always say now it will show itself. xxxxxxx
Hi, that must have been awful having to suffer all those years. During that time did you have negative mri results and what was it that confirmed ms in the end?
Small fibre something or other. He said it’s the last lot of tests hes doing coz he doesnt think they will show anything and we will just have 2 wait and see. Today I was brought back 2 normality anyway, my best friend was told she has bowel cancer. 32. Devastated for her. So u r right, enjoy life and take it as it comes xx
I am sorry about your friend hun. Its crazy as at my age every two years we get sent a bowel cancer kit why dont they do this for younger generation too. the trouble is so many people put it down to IBS, or piles.
My daughter is one and i am worried about her, but she wont listen to me. Her doctor rang her yesterday and said you should be seeing me shouldnt you about your weight loss. I give up truly she will be 46 tomorrow. she worries more about her horses then her own health.
So sorry to hear about your friend. Yeh, it can be worse for some. I`m sure she has a good friend in you. xxxx
Yeh, I had 4 negative MRIs and 2 negative LPs, but it was finally found that I have spinal MS last month.
Thanks guys, maybe 1 day they will offer screening to younger people. Look at the cervical cancer vaccination. Who knows. X
Was there anything you were able to take for the neuropathy? I have noticed mine progress in the few weeks I have had symptoms to where I am getting more burning and shock pain. I can only see this getting considerably worse in the next few weeks as I try and get a diagnosis
My prescribed painkiller is amitriptyline. I think it is a marvellous drug. I take 50mg at night now, but have been up to 75mg and even 100mg in my very early days…22 years ago. Without it (and I have since tried to see), I get the most awful pains in my buttocks and the rear of my thighs, as if I am sitting on broken jagged glass…horrendous. This is a nerve pain tablet.
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