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confused

Hi I’m Irene and I live in Cyprus, I’m here for some advice as I think im going mad! I will try to make it short and any advice will help. Last year I lost sensations in my fingers and toes and part torso, after a lot of x-rays bloods I was refered to neuro but waiting list 1 year. Meantime I kept having the buzzing sensations down my legs kept thinking my phone was in my pocket, then after about 3 mo ths I just could not get through the day. So I decided I couldn’t wait for hospital appointment and saw a dr privately. Did mri which showed some leisons in brain and spine, dr diagnosed MS!! So I was admitted to hospital for iv steriods, hospital dr said not ms and if it had not been for mri and recommendation from private dr would not have treated me as my leisons were not enough to warrant my symptoms? Continued steriods for 75days! Still did not feel great and my vision became blurry still weakness, the hospital dr recommended that I took antidepressants! They did take a spinal fluid test which came back inconclusive. I sourced another private dr as I felt 1st dr was a bit quick, I had 2nd mri which showed leison in my neck had improved he diagnosed Myelitis. He prescribed lyrica which I had taken for about 4 months with very minor improvement. I had 3rd mri recently after 7 months and no new leisons! However my feet are buzzing, im shaking continously, im weak, my right eye vision is significantly darker and have double vision, my fingers and toes are still numb, my muscles jump all over the place. When I saw the dr last week and told him, he said that I should be feeling better and my symptoms are not related to mri results! I was soo cross of course I was relieved that it was not ms but that has not improved my symptoms! I’m in limbo as he told me nothing he can do! Basically told me im crazy! Anyone else had any similar experiences? Any suggestions? Am I crazy?

Hi Irene

No wonder you’re confused! What a load of upheavel

I’m sorry to hear about all your symptoms and how you’ve been bounced about from one place to another, it doesn’t do your anxiety any good, does it?

I’m afraid I haven’t had a similar experiences that I can offer, but just wanted to give you ((hugs)) and tell you I’m sure you’re not crazy! And I hope someone else will be along soon to offer you some actual advice

PG xx

Hi Pandagal,

Thanks for your support, I saw original dr today and he reassured me not crazy! Told me I had residual from the first attack and prescribed some steriods to calm my symptoms down. He explained that this was one attack so far, and to monitor me for further symptoms. I just want to feel like myself. Thanks for hugs, means alot. Xx

Hello :slight_smile: sorry to hear you’ve had such a rubbish time. What you’ve described sounds like nerve damage, though I’m no expert. It’s also weird to have all those symptoms but no corresponding lesions or fresh lesions. Sounds like they don’t know what it is. If I was you I would keep pushing for a diagnosis. Maybe you could see someone new and show them the results of your previous tests? You are not crazy, there’s obviously something going on. They will find it but keep strong and keep pushing xxx