Hi everyone, Not posted on here for a wee while. Wee bit of a predicament now in that I attended my yearly appointment at my Haemetologist in London (for the last time) as at that point I did not have an appointment in Glasgow. The Doctor said my bloods were excellent and there was no sign of any lymphocytosis. He did not think I had TLGL with my blood scores. I took that to mean that I was in some sort of remission which would have been great. Ok, roll on to November and by then I did have an appointment in Glasgow. Attended and spoke to another consultant who knew about the condition. He also said that he did not think I had TLGL due to my blood scores. He did a Blood Film check to count the number of cells as well as my usual full blood count. He made an appointment for 1 year ahead then a discharge to GP Care. What is going on, I was told in August 2022 that I had TLGL now 2.5 years later, 2 new doctors are having doubts on the diagnosis . Tempted to email the Royal Marsden and ask them for a full copy of the Bone Marrow Biopsy report. The part Ive seen in my records said low grade Lymphadenopathy.
Hi @Jbeaver12 wonderful to hear from you again and it sounds as if you have now moved to Glasgow.
This has actually given you a second opinion.
Just to say I was actually referred back to my GP’s care and monitoring.
This brought up so many emotions and thoughts in me. I felt a fraud, abandoned, angry etc.
Actually it is now to my advantage as my GP’s are far nearer to me than the hospital. I was also told that I would be fast tracked if anything was amiss.
As for your change in diagnosis name that is a medical matter that we cannot comment on and you might want to talk to your specialist nurse if you have one, GP or consultant.
Please do let us know how you get on.
I hope you are now settled after your move and really look after yourself
Its not confirmed, that is the confusing bit. I will be checking with the Consultant probably next week or even after xmas. I have moved back to Glasgow (June 24). I need to move house again soon as my wife is now wheelchair dependent following a fall and also surviving septic pneumonia. I feel absolutely brilliant , even one of my friend’s who was an actress on The Bill commented when she saw me last week in London that I looked so much better from when I spoke with her last which was over 18 months ago.
Hi @Jbeaver12 yes, perhaps you do need a wheelchair friendly home, please send my best to your wife.
I am glad that you feel brilliant now.
Be kind and really look after yourselves and please do keep posting