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Beginning to feel a bit alone

i was diagnosed with RRMS on Wednesday but I am still baffled why I had certain symtoms during my CIS. I felt faint, a sensation of fainting in my sleep, a sensation of losing conciousness for a spit second (brain blip?) when sitting up and sleep apnea. I also had night sweats and would wake up covered in sweat. I wrote a letter to my neurologist two weeks before seeing him and the neuros secretary said she would keep an eye of for the letter. During my appt yy neuo was pushed for time with my examination, diagnosis and where to go from here. I didn’t get to say all I wanted but it came to light at the end of my appt he didn’t receive this letter which discussed my symptoms mentioned above. I have the MS nurse coming on Thusday but I get the feeling these symtpoms were not normal for a CIS. I emailed the MS nurse yesterday my list of symptoms including those mentioned above so at least she should read them and let me know. I know worrying won’t help me x

I guess I want to know were these symptoms indication of a seizure ?

Just sending {Hugs}. I’ve got my first Neuro appointment tomorrow and I don’t know if the neurologist will have read the notes that my GP said he’d include in my file. I’m taking more with me, thanks to the general impression I get from good folk like yourself who share their experiences, that information doesn’t flow as it should in the NHS! I hope you get some explanations for your odd symptoms, Helebon.

Interesting that you say this but when I have been in bed I have had that fainting in sleep sensation and was baffled how that could happen when lying down. Hope you get some answers sending you a big hug to let you know you’re not alone people care Axx

Hi Helen,

I would get the night sweats checked out. They are not a MS symptom and could be something serious.

Moyna xxx

Hi Helen

I get the night night sweats and my old neuro said that it could be to do with my MS. I had my hormones checked and everything was fine. I used to get them in the run up to a relapse but since my relapses are more under control I tend to just get them every so often…I’ll have them for a few nights, then be fine again.

Yes it’s best to be checked out as it could be your hormones but it ‘could’ be MS.

Sorry I can help with the other things. Hope you get somewhere with your MS nurse. In the meantime try not to worry too much.

Sue

x

Hi Helebon,

I’m not sure about the fainting when asleep, but I feel faint if I stand up too quickly and suffer from bad night sweats and am now waiting to be tested for autonomic dysfunction. It may be worth Googling and seeing if that fits. Apparently it’s not common in MS but does happen.

Mags xx

Thanks for the relpies I haven’t had the night sweats since the CIS. I had a lot of symptoms during my CIS and I get the feeling I kept on demeylinating at the time even taking the steriods if thats possible as I was handed a big load of lesions for my first relapse. i have lesions on my spine including cervical, thoracic, brainstem and brain.

One of my symptoms i’m left with is purple toes on my left foot. My toes are fine when I have been walking around or in bed, the ciculation seems fine then. Its just when I sit for a while they go purple and if I stand still too for a while. My neuro doesn’t think it is Reynolds syndrome as he asked do they go white first and they don’t, well i’ve never caught then going white first. But he didn’t tell me what he thought the problem was. When I mentioned to my previous neuro I get purple toes he said Reynolds only effects hands and not toes - well the NHS page for Reynolds says it can effect hands, toes and any other extemity so he got that wrong (worryingly). Again one for the nurse this week. xx

I’ve been reading about ADEM and it can cuase a change in conciouness and metal behaviour and can leave a patient with MS. I accept i now have MS. During my CIS I was raging with stress and anxiety, causing me to have panic attacks in bed, I was not quite right in the head. But who would be with a brain swelling?

My lesions are widely scattered. The night sweats could be the fever? I knew I should have gone to hopital the night I became really ill with the losing conciousness after my neuro appt (but before my scan) but I was so scared of everything. I was in a houseshare at uni at the time with people I hardly knew my family hundreds of miles away. In the morning I visited neurology outpatients but the secretary said they have no one availeble to see me at the clinic but a note would go on my file of my visit. I should have walked into A&E. I get the feeling what I had wasn’t just a normal CIS (if there is such a thing). I didn’t get any steriod treatment untill really late (tablets) and started the first pill a week after the neuro appt. I wished the neuo just admittted me to the hospital when he first examined me. He asked if I could cope at home and I said yes as I had my eye patch but in hindsight I didn’t speak up.

I’ve been reading about ADEM and it can cuase a change in conciouness and mental behaviour and can leave a patient with MS. I accept i now have MS. During my CIS I was raging with stress and anxiety, causing me to have panic attacks in bed, I was not quite right in the head. But who would be with a brain swelling?

My lesions are widely scattered. The night sweats could be the fever? I knew I should have gone to hopital the night I became really ill with the losing conciousness after my neuro appt (but before my scan) but I was so scared of everything. I was in a houseshare at uni at the time with people I hardly knew my family hundreds of miles away. In the morning I visited neurology outpatients but the secretary said they have no one availeble to see me at the clinic but a note would go on my file of my visit. I should have walked into A&E. I get the feeling what I had wasn’t just a normal CIS (if there is such a thing). I didn’t get any steriod treatment untill really late (tablets) and started the first pill a week after the neuro appt. I wished the neuo just admittted me to the hospital when he first examined me. He asked if I could cope at home and I said yes as I had my eye patch but in hindsight I didn’t speak up.