New cidp (uk)

    • February 13, 2019 at 4:39 am

      Hi. I’m new. Just saying hi.
      I’m a 37 year old woman.
      I have had hashimotos thyroiditis for 8 years. After years of pain and sensory problems I was given an mri 2 years ago which showed demyelination on my spine. In July 2018 I lost all feeling in my legs and arms. I was admitted to hospital. Mri showed demyelination and inflamed area around nerves. Sorry I don’t know technical terms yet. I was diagnosed with cidp. It started to improve so I wasn’t given any treatment.
      I moved to a new area recently and new consultant said he would keep an eye on me but saw no need for further tests or treatment. In the last week things have gotten very bad again. Lost feeling everywhere and finding balancing very difficult. My consultant is away and I was told I have to wait until the end of this week before he’ll be back. Then I can call and arrange an appointment. So I’m left with limited movement and 3 children to care for. My husband is doing wonderfully but still has to work.
      I feel like I’ve just been left to deal with it alone. I’ve been given very little information and no idea what you expect.
      Has anybody else here been left without any treatment at all? I’m very frustrated and lonely. I just needed to reach out to people who will understand.
      Gem x

    • February 13, 2019 at 2:09 pm

      Well I can relate Gem. When I was first diagnosed I had to wait almost 4 weeks until the insurance company gave the go ahead. Everyday getting a little bit worse and I was getting more and more frustrated.

      I am sure there are many people on this board who understand what your going through. You have to keep the faith that everything will work out.

      Good luck to you and take care.