Ok my story starts at 19. I had a problem with my eye. I got a small strain and everything was darker to look out of. I went to see a eye specialist who said it was nothing. Then about two years later I was sent to another specialist who said it was most likely a episode of ON. I went to a neuro because I was having problem with weakness on my right side. They did a brain and back mri and it came back fine. This was about 4 years ago. Since then I’ve had a episode where all my right arm went weak and painful. Then my knee went weak then on another occasion my right lips. About 3 weeks ago I went to the doctor’s and he has booked me another neuro appointment. I’m 27 now btw will be 28 in May. In this tine from the doctors I had a stressful day and woke up and all my body would tire quickly. Like all my muscles would tire really quickly. Then about 10 days after this my left shoulder has gone weak. This is where my worry is. I’m scard other than MS I may also have mnd. Ive ready that mnd can start in the shoulder. Like I can barely lift it and it’s weak. My nananas brother who’s 72 has mnd so I don’t now if that puts me more at risk. Like I would normally put it down to ms. But my weakness has always only effected my right side. And it’s usually a whole limb not just a part of it. I’m so depressed and down. I’m on anti depressants and uped my dossage but it doesn’t seem to be touching my low mood and worry.
Hi I didn’t want to leave your post with no reply. I can’t answer your questions but I do understand how the waiting and not knowing can effect your mood. Like most others on here we’re all somewhere along the diagnosis path, all waiting, with a dozen questions running through our minds, few if any answers and those that we do get are so slow in coming.
I have some days where I try, and succeed, in being very pragmatic about it all. But I also have days where I panic, worry and cry. As I said I can’t answer your questions but do take comfort if you can from knowing you’re not alone in this.
Debs
Hi
I think that MND weakness does not go away, it just gets worse. It sounds like u have experienced weakness in limbs and other places but it disappeared. That does not sound like MND from the little that I have read. Also if it was MND, and it started at 19 and u are 27 now, then u would now I imagine be immobile if here at all. So to me it doesnt sound like MND but Im just someone who reads too much on the internet. Maybe ask your neuro about this. Sorry to hear about the depression. Hope things get better soon.
Equally, I started replying to you earlier and was interrupted by the dam phone.
You sound very very worried about what could be wrong. MS / MND!! Neither is a good thing.
But what you’re doing is trying to self diagnoses in advance of the neurologist. It seems that in today’s NHS, hospital management are happy to let people go without effective diagnosis for far too long.
Unfortunately, only a neurologist can diagnose you. And with the best intentions, no one can help you to a shortcut diagnosis.
It does sound like you need to see your GP to discuss your neurological (?) symptoms and your current antidepressants. It’s possible that you need to have your prescription amended.
Also, see where you are with the wait to see the neurologist. After all, your neuro appointment is only step one, s/he will then most likely send you for tests, MRI etc. So if you phone the appointments office at your hospital, make sure they have the referral and try to find out where you are in terms of your appointment. See if they can hurry it up at all.
Sue
Your definately not alone. I hope you find the answers soon. xx
Thank you for your replies it’s nice to have support. I’m going back to the doctors to see about speeding up the neuro appointment and talk about mental state at the minute.
- After having joined this site I have realised that I’m not alone either.if you need support or even advice then this the place.everyone here has given great help and support.we always tend to imagine the worst case scenario don’t we??.as for your depression please speak to someone.take care…
I’m sort of similar to you, Siyman. I went blind in one eye at around age 21, that resolved itself within a day or so after a GP suggesting retinal detachment, and since then I had oss symptoms that I shrugged off until this week. I’m not an expert but from what I’ve read, MND might not have taken so long to announce itself and as someone said, you’d probably be immobile before now if it was MND. Having said that I never mentioned my temporary blindness to my GP and he’s sending me for MND tests among others. So it’s on my mind too. You have my sympathy 
I forgot to mention that I’m 32 now.
House Spider, if your current GP doesn’t know about that temporary vision loss, I think it would be worth putting that right. The more pieces of the jigsaw that are to hand, the easier should be the process of finding out what is the matter.
Alison
Sounds sensible, and there were two other odd vision issues in the intervening years, just not blindness. I’m going to make a note of it and will tell him when I visit for the results of the blood tests.