Clinically isolated syndrome

[StrongerJourney]

Hi! So this is my first post here. Hoping someone might be going through what I have the past 2 months. On March 31st I woke up with my leg feeling in ice water, to the touch it felt slightly numbish but not cold on outside. Throughout the day it took over my entire left side of my body. (Exactly half front and back!) by the end of the day, I couldn't get my clothes off to take a shower, and when I did, the bath was the worst pain to experience! I couldn't feel hot or cold sensations. The drip of the water was like needles. I was admitted into a teaching hospital In Pittsburgh where they first said it was transverse myelitis. I had a positive MRI for lesion on my spine, my Brian was clear. My spinal tap was positive for 11 oligoclonal bands igg index and others. I just went to Cleveland Clinic, Mellon center for MS and after all their research have been diagnosed with clinically isolated syndrome. I had a positive OCT on my eyes to show demyelination. I just finished 3 days off methylprednisolone, I am weak and lost. I'm also on 3200 mg of neurtion. I can't fuction with my left side at all. If anyone bumps me or touches me it feels like the worst sunburn. To walk feels like on hot sand. I have extreme pain always, burning, pinching, pins and needles. Can't stand heat or cold anything. I have to keep my skin covered all the time. How long will this last? Has anyone had this issue? I have been completely health til now. I'm only 31 years old. Dr is leaning toward MS I fear. Just want to know of someone who has been through this Journey. Thank you in advance!

[HVAC]

I am with Jen on the steroids. No one can say how long symptoms will last. There are two processes in MS inflammation and nerve damage. In the beginning it is more likely to be inflammation.Steroids help bring down inflammation. When inflammation dies down so do symptoms. With out steroids inflammation goes away on its own. No one can say not even a doctor how long you will have symptoms.

Neurontin should help with symptoms. You have not been on it that long. It will work better once it has built up in your system.

Alex

[jensequitur]

Sounds like you could use a round of IVIG steroids to help you over this flare.

I've done the OCT and it was really interesting - also depressing! I felt like I was one flare away from being blind.