Confused – Word of the Week

There has been one event that has dominated my week and it has left me feeling confused.

On Tuesday I had a hospital appointment to see my consultant. I’d had some tests late last year and he had called me in to tell me the results.

This year I have been trying hard to come to terms with my illness. I have been in touch daily with other sufferers via Facebook and my journey has been shared since my hospital stay last January. Reaching a whole year made me feel really low because most members of the group had shown some kind of recovery within a year, or had been diagnosed with something else, mainly Multiple Sclerosis. I began to worry that because my recovery was not happening that maybe that was my fate too. Even if it wasn’t, then the thought of never recovering made me feel really low. One third of Transverse Myelitis sufferers do not recover.

However, my trip to hospital has totally messed up my head as I have now discovered that I do not actually have Transverse Myelitis. The reason for this is because they found an anti-body in my blood which suggests another diagnosis and the EMG and NCS confirm it. I do not have Transverse Myelitis, I have Stiff Person Syndrome.

I will need to go back into hospital very soon for five days of intravenous steroids which is the first line of treatment for Stiff Person Syndrome. I won’t need to stay, I can go in the morning and come home each afternoon. Then I will have a further 3 months of oral steroids. If that doesn’t help there are other alternative medications I can be offered. It sounds good doesn’t it? I can be treated. But, they cannot promise that I will get well, only some improvement. Then I will need controlled medication for the rest of my life because SPS is not curable. SPS is progressive.

It’s been a few days now and I’ve found very little information on Google, especially concerning prognosis, and I’ve yet to find any support groups that are in the UK.

Just when I was struggling with one condition, I find I have something else and it’s thrown me into confusion.

The Reading Residence

9 Comments

  1. January 13, 2017 / 10:39 am

    Oh dear it's always good to have a diagnosis, a name to hang your symptoms on but that is not so good when it is obviously something rare. I've never heard of the condition but it must be a worry. I hope you find a group but stay in your other groups. The name may be different but it appears the symptoms are similar and it's always good to chat with those in a similar position. If you ever need a chat with someone detached, albeit someone who has no idea what you are going through, please feel free to contact me. Hugs to you. Xx Sally

  2. January 13, 2017 / 12:46 pm

    Oh gosh! No wonder you are confused….You've been dealing and coming to terms with one condition and it turns out it's something else….I hope you manage to find some support and the treatment helps. Sending love and hugs x

  3. January 13, 2017 / 2:06 pm

    This is very confusing, and it must be frustrating to find so little info about it either. Having come to terms with your previous diagnosis and connected with other sufferers it must be so difficult to be told it's not that at all but something entirely different. I hope the treatment makes a difference and you can find a support group soon x Thanks for sharing with #WotW

  4. Dean B
    January 13, 2017 / 4:47 pm

    Oh dear, I can imagine how difficult a new diagnosis must be for you, so sorry to hear that. Hopefully things will somehow get better. #wotw

  5. karenblower
    January 14, 2017 / 9:56 am

    Oh wow.. now that would knock the proverbial stuffing out of you.. I hope you can find some support somewhere. There is a Twitter account @rarediseaseuk I don't know if you've contacted them, they might know of organisations that can help you? take care x

  6. angiemwebster77
    January 16, 2017 / 12:10 pm

    I'm not surprised you are confused Anne. Coming to terms with your illness for over a year then finding out that's not what you have must have knocked you for six. I really hope the new treatment will help you. Take care x #WotW

  7. mummyhereandthere
    January 16, 2017 / 8:22 pm

    That must be hard to deal with the change, fingers crossed that this is revelation is a step forward for you X #wotw

  8. liquoriceuk
    January 16, 2017 / 10:12 pm

    It must be so hard to have to come to terms with one diagnosis and then have it overturned and to have to start again with a new one. I hope the new treatment will work well for you. #WotW

  9. January 17, 2017 / 10:54 am

    Cricky, it must be so tough not knowing what you're dealing with, no wonder you're confused. I do hope that you get more clarity and certainty soon, then at least you'll know what the problem is. No knowing must be the most difficult part
    #WoTW

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