Pre-Diagnosis Symptoms

[Ned1]

This is such a wonderful supportive forum. Thank you to all for responding to all my questions. I have another.

Is it possible to have CLL-related symptoms while one's blood counts are within normal values? Reason I ask is that for about three years prior to my recent diagnosis, I had not been feeling well. Nothing too specific just a feeling of not being "right" and slight fatigue. Can the disease be active without any evidence showing up in any of the blood work?

Thanks.

Ned

[Cammie]

Oh yes!

This is why many medics do not accept that fatigue is a b symptom of cll as it can occur before the bloods get to a stage where treatment or even concern is expressed.

However we all know that fatigue is a very common symptom that affects us all in differing levels.

I speak from my own experience not from any medical or research based evidence.

Geoff

[Lilac45 in reply to Cammie]

Hi, I don't post much but read the forum very regularly; benefitting hugely from all of your insights. My husband has CLL and we were just discussing yesterday that 3 years prior to his dx he had a frozen shoulder followed by shingles. We are convinced this was the onset. I totally agree that seeing someone with a holistic approach is probably what CLL needs. Currently my husband is caught up in a very mediocre service and we are on the search for a specialist. He has rarely seen a consultant and sees someone different every time. I think the experience of living with CLL is more important than the blood results in some ways but rarely is taken seriously by my husbands medics. As someone who works in the nhs with children it drives me a bit mad when I can see how much children's services account for emotional and experiential factors as much as the medical needs and this has shown to improve overall outcomes considerably.

[Newdawn Administrator]

I agree with Geoff and for nothing more than experiential and anecdotal reasons. I feel the problem with some haematologists is they are very scientifically trained in terms of blood analysis and anticipated correlation with illness and body malfunction. My now 'sacked' haematologist couldn't see beyond his computer print out when a holistic approach with greater thinking outside the lab box is needed with CLL. Thankfully we now have excellent CLL specialist with much wider insight. Problem is getting them as your Consultant,

I remain convinced that CLL is connected with and has a deep link with systemic inflammation of all kinds. It amazes me how many people suffer joint and muscle pain as a prelude to diagnosis. I certainly did.

Best wishes Ned,

Newdawn

[gnlwood]

Five to seven years before diagnosis I had strange rashes, joint pain and dry mouth and bleeding gums. Blood was fine. Neutrophils and lymphocytes were in proper balance. Went to many Dr's including a rheumatologist who found nothing wrong not even sjogrens which I was sure I had. Guess it was simmering.