Forum

Last ditch attempt for support

Hi.

firstly, thanks for reading this. I’m writing because I’m literally stuck with what to do and would like some advice.

my symptoms first started two years ago with blurred and double vision. I later went to an optician who said my eyesight was fine - didn’t need glasses but I had the acuity of a 60 year old (I’m 24 now so was 22 then). I then started waking up with pins and needles in my legs and arms - different each time, and sometimes my limb would be completely numb to the point where I had no control over it for about 10 minutes. I then started getting pins and needles in my hands and arms during the day, and also down the side of my face. At the same time, I was still experiencing double vision and was also sleeping 10 hours at night and 5 hours during the day. At certain times my family thought I was drunk because I was staggering around and slurring my speech. Long story short, I had an emergency cat scan and Mri which showed no lesions, but that I had a malformation in my cerebellum. The neuro thought this could have been something I was born with so left it. After about 4-5 months, my symptoms disappeared except from my eyes, of which are still extremely sensitive to light and I still have trouble focusing them/double vision.

after two years, my symptoms reappeared in June this year. It started with me waking with pins and needles in my hands, and completely numb hands too that I couldn’t move. Between June and now I have experienced the following - pins and needles/ numbness in my limbs both at night and during the day. Double vision / trouble focusing eyes. Dizziness / lightheaded - feeling like I could fall down when I’m walking. Trouble walking down stairs without gripping the sidebar. Shooting pains in my right eye. I also went for a chest x Ray because for about 2 weeks I felt like I was wearing a corset around my chest. This came back clear. The past month I have been exhausted. I had to take last week off work because I literally couldn’t stay awake.

I’ve had my blood done - all clear. Docs say my eyes are healthy so don’t understand why they cause me so much bother.

ive been referred back to the neurologist but where I live, this is currently a 7 month waiting list.

Ive fairly convinced myself that I have ms and my symptoms this year are a relapse. Does this sound like MS to anyone else? I really feel like my doctor thinks I’m making it up. He gets me to do things like walk from one side of the room to the other which I can do - but add some coffee tables and doors in there and I will walk into them! My spatial awareness is horrendous - I’m so clumsy and always banging into things.

please can anyone advise their thoughts of my symptoms??

Hi,i cant help you but can sympathise with you. Im currently in a relapse of something similar. Do u know you can see a neurologist privately,thats what im doing. It costs about £150 for the consultation then if u need a scan u can decide if u want to go on nhs list or go private. Last time i did the same and only waited 3 weeks on scan

This wont answer your question but with double vision, I believe it is useful to establish if it persists with one eye covered (i.e. is it monoccular or binoccular).

Spellings should be monocular binocular

See if your GP could hurry up your neuro appointment…not very likely though. The 7 month wait is pretty much usual with the NHS, going private would get you seen sooner (probably by the same neuro) but of course you’ll have to pay. Short term your GP may be able to help you manage your symptoms until the neuro appointment arrives.

MS mimics many other ailments, so only a neuro would (possibly) be able to diagnose you. Sorry to say, but this usually takes quite a while & probably would mean you having many more tests.

Good luck,

Rosina

Hi everyone, thanks for your replies.

Regarding the double vision, it’s like my eyes just don’t work together and won’t focus on anything. I also get light blurring (only way and can explain it) and visual halos.

Ive also recently been getting pains in my shins when sitting down and a really sore back when standing. I can only stand for a few minutes (literally) before I feel I need to sit down again. It’s like standing is too much effort.

Does anyone know how much a private mri is? I’m in Scotland but I’m sure it would be similar to England.

thanks.

Your GP would be able to give you that information

Rosina