CLL Support Association
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Need advice!

Hi i’m Michael I’m 27 years old from the UK. I’m currently In hospital due to a severe lung infection that came on very suddenly. It’s the latest in a long list of cold and viral infections that are becoming regular. For two years now I’ve been experiencing deep achy pains which reside in my bones, legs, arms, hands, feet, toes, fingers, you name it, it aches and is very tender to touch. For four years my lymphocytes have been constantly slightly raised and recently before I had this lung infection my neutrophil level suddenly spiked too. No doctor is taking me seriously. I’ve had blood tests constantly for arthritis and X-rays all coming back negative. I’ve had high blood pressure constantly alongside these problems. I have night sweats, random bruising and want to sleep all the time even when I’m forcing healthy nutritional food down me to get energy alongside vitamins I feel tired constantly. I’m at a crossroads and need some advice or encouragement please because I feel like the doctors think I’m lying!! :(. Please someone, anyone?

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Have you been diagnosed with CLL, or are you looking for answers. Have you had a flow cytometry test done? Another thing you should ask about having tested is your IgG level, because of your frequent infections.

I understand your frustration. It took 5 years of being written off to get my diagnosis. One doctor told me that I just wanted a cancer diagnosis and he wasn't going to give it to me. Oops! That was the diagnosis.

Let us know how you are doing and if you come up with any answers!

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Hi Mj1991,

Can I ask, what part of the UK are you from and have you been seen in a hospital haematology dept? Can you share your Platelet and Absolute Lymphocyte Count?

As MsLockYourPosts says have you been diagnosed with CLL yet or not?

My first suggestion us to try to keep a written log of your GP and hospital visits and make sure you get blood results, a single set proves nothing but a trend (IF it develops) is important.

Whilst not a reason for treatment alone (if it is CLL) the blood tests will help with diagnosis. For CLL, if indeed you do have it high ALC where treatment or more monitoring might be on the cards is an ALC of 30+

Your medical team are the correct people to do your diagnosis, however, diseases such as CLL have often not been seen by GPs, it is only specialists that get to know the symptoms well. For example in my GP practice I’m only the second case they’ve had.

I know it is very very hard, however try to persevere and hang in there. Ask to see a haematologist, or even pose the question “could this be ....?”.

best, rob

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Hi Micheal, this all sounds very familiar to me as before diagnosis I was being tested for arthritis and most of the symptoms you described, however the thing with CLL is there are a lot of other conditions that can cause you symptoms which tend to cloud diagnosis. I was diagnosed at 47 and was considered young to have CLL which seems to be a misconception as you will notice with the wide range of ages on this forum, so perhaps that may be clouding judgement. All I will say is stay away from doctor google as you are on a forum with fantastic informed people who can give you sound advice. Good luck going forward and don’t be fobbed off , remember its the squeaky wheel thats always fixed first .

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Have you had a blood count? What hospital are you in?

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Ask about a flow cytometry, it is done on a blood draw and gives a 'fingerprint' or some say 'barcode' of CLL and separates it from other lymphomas...

It will confirm the diagnosis, then find a haematologist experienced in CLL , should this be the case. Generally you will better served in major cities with research hospitals...

CLL at your age is very rare, and bone pain while sometimes reported by patients, isn't a CLL symptom as such, but drenching night sweats and brusing are, but they are also seen in other leukemias and lymphomas...

All the best

~chris

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Hi all! Thank you all for your advice, care and wisdom. I’m currently in the uk at the James paget hospital in gorleston in which today my blood pressure is 170/94 today. I’ve had a argument with the doctor today as results are showing fine apart from my lymphocytes over for years being slightly raised. Like I said I haven’t been diagnosed with any cancers or any other similar disease. In fact they’re aren’t believing a thing I say even though they can actually see me sweating etc! Nurses aren’t happy because they can see how much I’m struggling. I can’t give you any more answers to questions you e asked me at this moment in time as the doctors are so one dimensional In there thinking! The doctor I had come see me this morning turned round and said these words! ‘If it’s not in your blood then you do not have these symptoms!’

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Oh and to just elaborate my family have got history of leukaemia within the family where only a bone marrow test showed a type of leukaemia!

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Hi Micheal , I suggest you contact PALS nhs, you can raise your concerns in confidence and if needed raise a complaint, although if your feeling unwell I know this is not easy. The sweats and raised white cells alone should get you put onto the 2 week rule and accessed hopefully to rule out leukaemia. Also I have a low platelet count and swollen lymph nodes in my neck, all thought to be my CLL acting up, however it turns out its an immuno issue. So your doctors flippant response is strange as none of this is clear without your blood being mapped by a haematologist. If there is the slightest chance you have a cancer they must investigate, hence the 2 week rule. Be firm and good luck

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Michael - I'm in the US, so not familiar with PALS nhs, but it sounds like your next step. My CLL wasn't in my blood or my lymph nodes - very unusual case, but a Bone Marrow Biopsy gave doctors the beginnings of an answer to my symptoms. Hang in there and post any questions. There are many here who are in the U.K. and understand the systems there. The fact that there is a history of leukemias in the family should make them take a better look!

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