HTLV1 : In 1998 I was diagnosed with MS however... - CLL Support

CLL Support

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HTLV1

Lindy-loo1949
Lindy-loo1949

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.

7 Replies

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

lankisterguy
lankisterguyVolunteer

Hi Lindy-loo,

As migirlusa suggests, this group is primarily for patients with Chronic Lymphocytic Leukemia (also known as Small Lymphocytic Lymphoma) a B-cell cancer.

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I had to use Google to understand what HTLV meant, and I did find one support group that is specific to HTLV- see htlvaware.com/

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There are other Health Unlocked communities that might have other patients with similar non Hodgkins Lyphomas and T-cell cancers like yours.

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healthunlocked.com/lymphomaca

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healthunlocked.com/non-hodg...

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And beyond the Health Unlocked system the USA based LLS also has a chat and support feature that may be useful for Canadian citizens.

communityview.lls.org/dashb...

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And finally I did a Google search restricted to postings in the last 12 months and got these results : google.com/search?q=htlv+su...

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I hope you have success in finding others that can help you understand your disease.

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Len

Thanks 😄

MsLockYourPosts
MsLockYourPostsVolunteer in reply to Lindy-loo1949

LLS is active in Canada, also. There shouldn't be any problem with joining an online chat group.

Dear Lindy, I am extremely sorry to hear that!!!

I know about someone who had this retrovirus and then developed leukemia. They treated her with chemo- then bone marrow transplant. She felt perfect for a while, became a kind of 'success story', but unfortunately after a while it relapsed..

However, on wikipedia, at HTVL-1 entry, you'll find the experience of a woman who underwent a similar treatment and whose story had a happy-ending.

The good news here is that we are all different- so you never know.

I do hope you'll get a 'lucky ticket'!!!!!!!!!!!!

Please, don't give up searching and fighting!!!

I'm on this site only for few days, I love the 'openness' of some members and I try to see what others do to cope with CLL. Still, from what I've read till now, In Germany they are much further ahead with their research in the field!!!!

For instance, there they have been successfully engineering immune cells to treat c e r t a i n types of CLL for years... More than 10 years !!!! And this to give you just an example.

You might want to get in touch for instance with mll.com/en.html

and other clinques like that

Of course, you should first enter on google.de in order to see what they have there about your illness.

I'll pray for you, Lindy!!!!

Awww thank you. I actually stumbled on this site and was told it was not for me!! So I thank you for your reply. I 0have HAM which is paralysis in the legs, unreal pain in the back. 0all due to this virus. I am praying it does not become lymphoma. I appreciate all the prayers you can muster up! 🌻 praying is such a selfless thing to do and I really do appreciate it. God bless you💜

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