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What to do from here?

Hi all Looking for some advice on where to go from here with doctors etc and maybe so advice on just getting through normal tasks. (I’m 26)- So I started having serious problems last year in summer, I hadn’t been feeling well and lacking energy for a long time before, but started to feel like my torso was going numb, and getting worse with exercise. Ended up in hospital for a week, very weak and experiencing weird numbish sensations. Referred to neurology as an outpatient, had an mri which came back clear. Since then I had some strange blood results, tested twice for Lyme cause it showed up a bit funny, but concluded it wasn’t that. Also had elevated levels of proteins in blood etc which were looked into but nothing came of it. I’ve been experiencing depersonalization alongside this, so I get confused sometimes about whether I’m experiencing purely psychological symptoms. I have been referred to psychology and awaiting talk therapy, but could take a while. I understand that MS symptoms can mimic things like FND too. I’m still struggling with symptoms, mostly weird numbish sensations, vibrating sensations that kind of feels like a bee trapped under skin, feeling like I will collapse when I over exert myself (do too much cleaning for instance). Happy to await psychology and get help there but wondering if anyone has any further suggestions? And advice for just doing normal things? I struggle just going to the shops as I feel off it all the time. Thank you for reading and best wishes to everyone :slight_smile:

Hi Celpal93 - wondering if it might be worth asking for another MRI but this time with contrast which is where they inject a dye? Your symptoms will sound familiar to most of us on here but MS can feel very different for each person who has it. That feeling weird thing truly is horrid and does put you off doing things - I know exactly what you mean re the shops etc - I use a trolley even if I just need one thing but I know that not all shops have trolleys. I really do hope you get some answers soon. Hopefully others will post some suggestions for you as there are a lot of very knowledgeable people on here. Good luck.

Hi, Sorry to hear you’re experiencing all these odd sensations, it is worrying for you, more so when no obvious cause has yet been identified!

I am no expert at all but can identify with you to a point as I also ended up in hospital last summer when I couldn’t use my leg and had bladder retention.

However, my experience in hospital was slightly different - I had MRI with and without contrast of both brain and spine.

Have you had MRI of both??

I had evidence of 2 areas of inflammation on my spinal cord, but nothing obvious on brain - so had I been given only brain MRI then would be no further forward by now. So perhaps worth asking your GP to refer you for further MRI if possible?

Juniper mentions MRI with contrast - as I understand it, using contrast dye means that any currently active areas of inflammation will show up as “enhancing”. So this, if not already done, may give more information.

My Neuro also did Lumbar Puncture, and numerous blood tests including Lyme, Aquaporin 4 and Anti Mog, to rule out other conditions.

Hope this might help!

Minnie