Hello everyone sorry this will be a bit long, i’m really anxious and just need to get this off my chest.
So in June, I started losing sensation to the left side of my face. I noticed this at work and at first I thought my makeup was melting off however everything was intact. It started on the left side of my mouth then progressed up and down until half of the left side of my face felt like it was anaesthetised. Over the course of one month it spread to my left calf and left arm. I reached out to my gp once i had visited the dentist as 111 told me it might be a tooth infection. At this point i was constantly numb in some areas, tingly in others and experience a burning, prickly, hot and cold , pins and needles, electrical and vibration sensation in various areas of the left side of my body at different points. These were all different sensations. It then started inside my head where I would get zap sensations similar to when I first got off antidepressants years ago. In july it went, then it august it all came back except this time I couldn’t feel my left pinky, the sole of the left foot and I was getting eye pain and my eye was bloodshot. I was also getting migraines. I went to specsavers who said I had no eye issues other than the fact that I could not blink fast as my eyes would stagger. They found no evidence of optic neuritis I had a positive rombergs test, clean blood results however l now had a whole body fatigue and weakness like I was hangover. However I would try and rest and my whole body would be vibrating. This lasted 2 weeks.
Anyways I guess what I need advice on is am i being paranoid? My mri was on the 2nd of september and my hospital is in London and is very busy. I called yesterday and they said it’s been escalated as they think my results have been lost. 2 of my friends have been diagnosed with MS in the last 2 years and we are only 23. Am I right to assume even though they said they’re looking for MS, if it was I would know right now? I am so nervous for these results but I should receive them in a week now I am terrified.
Thank you so much for reading this far.
Hi LaLa. All those different and unexplained symptoms must be very worrying for you . My sympathies to you. Im no Medic and have no idea if what you have been experiencing is MS - it could be but maybe it’s something else.
I’m not quite sure what you mean by ‘if it was MS I would know right now’?
Unfortunately it just seems to be a problem with the way the NHS works that for MS getting results from MRIs can take a while - whether the result is negative or positive ( I remember getting very frustrated and more than a bit ratty with the wait for formal confirmation. Seemed like an eternity in limbo).
Don’t be terrified if it is MS. There is no cure and life will be different but treatments these days are getting better and better. I’ve had it for 17 years and am not doing too badly
Being in limbo is awful , frustrating and very worrying .
You know something is wrong but as yet don’t know what it is.
Let the health professionals investigate.
MS symptoms mimic many other conditions so the Neurologist needs to make sure that you get the correct diagnosis before you can start any disease modifying treatment.
Unfortunately due to the backlogs in the NHS getting scan results can take sometime.
It has taken almost 3 years for me to receive a formal diagnosis of MS although I knew it was coming.
You need to meet the Mcdonald criteria which I would suggest you should take a look at if you haven’t already done so.
My first MRI 3 years ago found many lesions in my brain and a couple on my c spine with demylination indicative of MS.
My Neurologist said it couldn’t be anything else and it looked like I’d had this for many years as the lesions were old.
He set me up with an MS nurse straight away.
I couldn’t have a formal diagnosis until the disease showed new lesions or I had a positive Lumber Puncture.
My lumber puncture was inconclusive.
I continued to have symptoms and regular MRIs but nothing new was found until June this year and I then was formally diagnosed.
I’m due to start treatment with Copaxone soon.
I hope you get answers soon but it often takes a really long time which doesn’t help with anxiety.
If results are inconclusive please don’t give up and continue to push for help and answers.
Take care
Yes 2. But they could not say if happened at the same time or not . So they could prove space but not time. Spine was clear. Lumber puncture with band’s so confirmed ms
oh my gosh that does not sound easy to deal with. I hope now that you do have a diagnosis getting help for it is a lot easier. Is it crazy that I am slightly hoping for a diagnosis of something even if it isn’t MS just so this whole thing can start and be done with asap
Hello Claret57, thank you for your response. I can’t believe you had to wait that long. Although I understand the way MS is and the diagnosis process, I still cannot fathom waiting 3 years for a diagnosis. You are a lot stronger than me !
Knowing other people have waited ages too helps so thank you so much. Wishing you all the best on your treatment
Well I knew what it was and decided that stressing about getting a formal diagnosis wasn’t going change it .
My Neurologist said it’s MS to myself and my husband 3 years ago.
I think it was clear from my MRIs and him setting me up with a MS nurse from the start.
My younger sister was diagnosed about 12 years ago and isn’t on any DMTs as there has been no change to her MRIs but she had presented with optic neuritis 20 years ago .
Im due to start injecting Copaxone soon to hopefully prevent further lesions or slow down
progression/relapses.
that does not sound easy to deal with. I hope now that you do have a diagnosis getting help for it is a lot easier. Is it crazy that I am slightly hoping for a diagnosis of something even if it isn’t MS just so this whole thing can start and be done with asap