My New Treatment

On June 5th I am going to hospital as a day patient for five days to try out a new treatment.

I will be getting an intravenous transfusion of immunoglobulin each day.

I am both excited and scared. I’m excited because I’ve heard that this treatment can be really good. It could make me feel more normal again, perhaps even ease my constant pain. Maybe I’ll be able to walk again. I am scared because it might not work at all, I have one of the rarer conditions that IVIG is used for, I even have one of the rarer types of my condition.* Also, as well as not working, the side effects can be very nasty.

I have lots of forms to fill in about what I can and can’t do and what pain I feel. There is even a form about my feelings and emotions. I have already been assessed physically for what I can and can’t do. After the treatment these assessments will be done again to see how well the treatment has worked. This is necessary because the treatment is expensive and it has to be proven that it works so that I can continue to have it.

It’s not a cure, it’s a treatment. If it works then I will have it every three to four weeks.

Since my new diagnosis in January I’ve been feeling really low. Last year I was positive and believed that  I would get better. Then I had the news that I wasn’t going to get better and, in fact, I had a progressive illness that was going to get worse and could be life threatening.

This new treatment has given me hope again. To be pain free for even a week would feel like a miracle. To walk again, even for a short while would be fantastic. My kids would be so happy to have their mum back.

My fingers are tightly crossed that this works.

For the first time this year I feel positive again.

*My condition is Stiff Person Syndrome (SPS), my type is Progressive Encephalomyilitis with Ridigity and Myoclonus (PERM.)

Debs Random Writings

My Random Musings

Cuddle Fairy

17 Comments

  1. May 8, 2017 / 11:42 am

    I bet June can't come quick enough for you….Fingers crossed the treatment works. x

  2. comfortspring
    May 8, 2017 / 11:43 am

    My prayers are with you that this procedure works and relieves your symptoms without horrible side effects. Modern medicine can sometimes greatly help us but not without consequences or side effects. I have RA and the medicines for RA can have terrible side effects. Sometimes it's a trade off of a side effect for the relief of pain. God bless and I'm hoping to read more of the treatment in June. #MMBC

  3. differentiationiseasy
    May 8, 2017 / 1:10 pm

    My fingers and toes are crossed tightly for you. I hope so much that this new treatment works for you and your family, you deserve to have some precious pain free days. Sending much love and many positive wishes. #PostsFromTheHeart

  4. May 8, 2017 / 3:40 pm

    Oh Anne, I really hope this treatment gives you some relief from the pain. I can't begin to imagine what it must be like to be in constant pain. Wishing you all the best #MMBC x

  5. storiesofourboys
    May 8, 2017 / 4:31 pm

    I hope your new treatment helps you a ton. My dad has become very stiff and rigid too. They don't know what he has. He is mostly in a wheelchair. He has osteoporosis very bad, and he may have Parkinson's. I hope that you are able to walk.

  6. mummyhereandthere
    May 8, 2017 / 6:34 pm

    I really am hoping.and seeing positive vibes for you and totally understand the dip in mood. X #mmbc

  7. May 8, 2017 / 11:36 pm

    Gosh you must be a bag of nerves and so many other emotions. I sincerely hope this works…to be pain free even for a week as you say…I just can't imagine what it does to the mind (not just the body) to be your condition all the time with no let up. Best of luck. I'm sure we'll be reading about how it goes on your blog? Thanks for joining #candidcuddles

  8. May 9, 2017 / 9:29 am

    I'm so sorry to hear about your dad, I do hope they find out what's really wrong with him soon and get him the right treatment. x

  9. May 9, 2017 / 11:25 am

    I really do hope this treatment will work. I understand your excitement but also your fear. #PostsFromTheHeart

  10. optrixxaris1
    May 9, 2017 / 1:33 pm

    My thoughts and well wishes are with you. I hope it is successful. #mmbc

  11. Fridgesays
    May 9, 2017 / 7:19 pm

    #candidcuddles obviously i hope it goes well. what does the treatment involve and have you ever considered pyscho energetic solution?

  12. upasna1987
    May 9, 2017 / 7:28 pm

    My prayers are with you Anne. This new treatment will definitely work for you. Your positive attitude is admirable dear. Blessing to you and family. Wish you all have a reason to smile always. #candidcuddles

  13. May 10, 2017 / 10:36 am

    I've never heard of pyscho energetic solution, I'll have to look that up. This treatment involves being hooked up to drip for 3 to 4 hours every day, and if it works it will be repeated every month.

  14. May 10, 2017 / 7:51 pm

    This is so exciting. I hope it goes well. Sending you lots of positive vibes and fingers crossed that the warnings about side effects are just-in-case and nothing else. Fingers crossed for you. #MMBC

  15. May 13, 2017 / 11:33 am

    I really hope this works out well for you. Stay positive!
    Thanks for linking up to #AnythingGoes 🙂
    Debbie

  16. The UnNatural Mother
    May 14, 2017 / 10:43 pm

    Im crossing , my fingers , toes and legs . You deserve a break !! Good Luck Anne #PostsFromTheHeart

  17. yvonneneely
    May 15, 2017 / 9:27 pm

    Keeping everything crossed that it all goes ok. good luck #AnythingGoes

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