Lymphocytosis, now really worried.

[annedocuk]

Having had a lymphocytosis discovered on my Avonex blood test, it had gone up even further on a repeat although I am assured it is not hugely high. A diagnosis of chronic lymphocytic leukaemia has been made.
A haematologist has advised to do nothing at present and to continue Avonex. My neurologist, when I emailed him replied that he agreed with that treatment, or non treatment. Snag is I am now completely besides myself with anxiety, and seem not to be able to sleep or stop crying which can not be good for anything.
Has anyone else got both conditions?

[Jules A]

Are you sure your diagnosis isn't Chronic Lymphocytic Leukocytosis? That is different than Lymphocytic Leukemia.

While I have no advice for your particular case what I can say based on experience is that if someone had two specialists who reviewed the results, concurred with the course of action and have told a patient there is no treatment necessary and not to make any changes at this time my guess would be that it is very unlikely to be an emergency. Think of the word chronic which means persisting for a long time or recurring.

I'm in no way trying to downplay your concerns but it sounds like you are very upset and if your physicians aren't all jazzed up over it I'd take that as a good sign. Hang in there and I hope your anxiety reduces soon.

[annedocuk]

Yes in the UK we definitely call it leukaemia. The treatment is chemotherapy when it becomes necessary. The main problem is a susceptibility to infections and difficulty treating them I think.
I have to self catheterise, but often give myself infections. Partly because I feel so low, and partly I am worried about having yet another antibiotic for uti when I may need one for something else, I have stopped.That is probably false logic, but I can not cope with anything.
Sorry this sounds really pathetic.

[dkakavas]

CLL Chronic lymphocytic leukemia

Hello,

MS for 6 years copaxone for first 3.5 and Tysabri for last 2.5. During routine blood tests in June 2016, my WBC was found to be over 14k (not good). I was re-tested in July and Aug. Same results. I was sent to an oncologist in early September and after further blood tests including Flow Cytometry, my oncologist diagnosed me with CLL. Not sure if Tysabri had anything to do with this (jury is still out on this one). The oncologist said no treatment is required at this time (a silver lining if you will). He advised me to start w/ routine tests via my GP. I have not started yet on the routine tests as my GP is on vacation this week. I dislike the fact that so many disease causes are as of yet unknown... My heart goes out to you and we have to stay strong, positive and keep the faith. Like Jules said, "Think of the word chronic which means persisting for a long time or recurring." With this said, we could have years before this diseases' ugly head emerges. My heart and prayers go out to you and to us all!

Sincerely,

Demetrios

[annedocuk]

Thank you Demetrios. I spent a few months of misery over this , but now have managed to shelve it. I have come to accept that it is a chronic condition, with which you can live. Also, if treatment is ever necessary, there is good treatment, one of which even helps ms. And as the months go on, more treatments are being developed. It is even possible that some of the newer ones may be cures. I think there is real reason to be optimistic for CLL. Good Luck.