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Undiagnosed and unsure

I had an episode of severe numbness and tingling in my feet and lost sensation in my buttocks, nearly 20 years ago they found a lesion on my spine and this was put down to a clinically isolated syndrome, with an 80% chance of developing MS. I recovered from this then about 10 years later I had some other numbness symptoms and after an MRI was told I had transverse myelitis. I had further investigations four years later none of which has been conclusive.
Over the recent years I have had various symptoms including an electric shock type pain when I move my neck this comes and goes at various times. I also occasionally get numbness in my feet and occasionally, get restless legs and struggle with my balance almost like a feeling of drunkenness. I also wake up frequently in the night needing a wee, this symptom is always there and has gradually got worse.
A few years ago I was diagnosed with severe osteoarthritis of my right hip and needed a hip replacement. Since then I have been doing more walking and seemed to be okay but in the last few months I have noticed my left foot dragging when I walk and I have to consciously think about lifting my foot and the other day I found myself walking towards the left rather than in a straight line. I am also having episodes of extreme fatigue when all I can do is lie on my bed and rest and the electric shock feeling in my neck is happening more frequently.
I am now really worried and not sure what I should do next, I’m feeling anxious for the future and not sure what I should do next?

  1. Hi . Your anxiety is understandable with all the changes that are happing in your body right now. It can all be very overwhelming. I am glad you found us. There are so many people in this community who have been where you are now and will help you through it. Many of those people are not only surviving, but thriving years later. It sounds like it's time for a visit with an MS specialist. If you do have MS, you are probably experiencing a flare. A diagnosis would mean the proper treatment for the flare and medication to slow the progression. The National MS Society has a tool for finding an MS specialist in your area. Here is a link: You might need a referral from your primary care doctor, but maybe not if you simply ask for a second opinion regarding the diagnosis of transverse myelitis and the previous diagnosis of clinically isolated syndrome. If your symptoms worsen to a point where you are nervous about your safety, please go to the ER. Be sure to tell them about both diagnoses - transverse myelitis and clinically isolated syndrome - and about your suspicions that you now have MS. That might lead to diagnostic testing in the hospital and steroid treatment to reduce the severity of the symptoms. I hope you do not have MS and that it is something even more manageable, but know that we are here for you regardless. Keep us posted if you don't mind. Best wishes. - Lori (Team Member)

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