Hello, Thankyou for replying. My history is only small. I have been on medication for depression for a number of years. I was experiencing headaches and severe fatigue. I complained to my dr about this often, but it was brushed aside. Finally, I requested a medication change as I thought it was side effects from my medication. This was just before Christmas 2009. I went for a review in January, and my dr suggested we did some blood test just to make sure there wasn't anything else going on. Well, next thing I know I am being referred to an oncologist and booked in for a bone marrow aspiration. That all took place. After a three week wait for the results, I was told that I had stage 4 non-hodgkins leukaemia, however, I wasn't displaying any other symptoms. the onc was totally confused. Referred me to a haematologist in the major capital city. I was admitted to hospital for further tests including another bone marrow aspiration, a CT scan and a PET scan. Only the bone marrow came back negative. To make matters worse, it came back with a different story to the previous bone marrow asp. Talk about confused. So, basically it is my bloods that are all up the creek (oops, sorry an Australian saying, which means out of whack) My specialist are very confused. So have decided to go with LGL. I commenced Methaltrexate 5 weeks ago and have weekly bloods done. I am also a nurse, so my doctor gives me copies of my results. My bloods haven't changed. I have a specialist appointment this week, so I hope to get some more answers.
In regards to information, as you say there is not alot on the internet. I understand there is a register for LGL sufferers in Florida, USA. They had a very interesting site with logical and easy to understand information.
I have come to understand the rheumatoid arthritis is a common link with LGL. I am only 40 years old. (actually, I found out my first blood results the day after my birthday. Welcome to the 40's)
I remain positive. I have a fantastic family. My husband is very supportive, my 11 year old daughter is tremendous and constantly amazes me with her ability to understand. My extended family are very close and also supportive.
I too look very well, and I don't feel sick (only when I take the medication, then I can be nauseated for a couple of days afterwards), but I am still at work.
My doctor says I should work from home as my neutrophils are practically zero. I have started to put things into place for this to happen, but I feel silly doing it. I don't feel sick, but it is approaching winter here, and other people in the office will start getting colds and the flu extra.
Anyway, I hope my wee message is easy for you to understand. I hope we are able to help each other with information.
Has your husband's bloods improved at all with the meth? How long was he on meth for prior to being diagnosed with LGL?
Take care and have a great day..