In 1998 I was diagnosed with MS however it turned out to.be HTLV1. There seems to finally be an awakening to this virus that causes all kinds of nasty things. Most people remain symptom free. Most... unfortunately I do not! There are an estimated 20-40 million people world wide who have HTLV1...I am sure that's a very conservative estimate for how can they test people who are perfectly free of symptoms. There's a Facebook page that was posted this month trying to draw attention to this dreadful disease.
I am struggling in many areas, primarily unable to walk as the muscles become weaker and weaker. I have developed bronchiectasis, I have to self catheterize just to name a few things I deal with. It is my hope that my coming out there will be more people who also will come out. The worst thing is to feel alone and we need to encourage one another or even just have a listening ear. If anyone suffers from this I would love to hear from you. We can share our victories with one another. Thanks for the listening ear.
Lindy I am so sorry to read this. My sister had this. You will probably receive a message from the administrator as this is a support group for CLL. I’m wishing you the very best.
Pam
Thanks for your response. Yes I did hear from the administrator but they didn't say anything that I could not post. I think it's just because that sometimes htlv-1 can lead to leukemia. I want to draw attention to this disease because I know in Britain there's 22,000 people in that have it and worldwide it's between 20 and 40 million people. I think that's pretty conservative estimate. I hope your sister isn't suffering if she symptom-free or does she have symptoms as well? Please keep in touch or get her to post to me. Once again thanks for answering. X