I went to my GP and she didn't know what the swelling and lumps are ☺

I'm a little confused as to what to tell the Haematologist on Saturday about symptoms. I have quite a few ailments and many of my 'symptoms ' could b recent onset of symptoms e attributed to them. I have diabetes, mild heart failure, atrial fibrillation, chronic hypertension, and mild COPD .

Should I just tell him about the most recent onset of symptoms? These include dizziness to the point of hanging on to anything and feeling close to fainting. This has been happening a few times a week for the past month.

Also after walking even short distances my feet hurt for up to two days depending on how long the duration of walking.

Sometimes have insomnia but mostly going to bed earlier and earlier ,waking up later than usual and falling asleep in a chair almost daily. This has been happening only for the past month also.

Thanks all ☺☺

5 Replies

  • Hi Suz,

    As I understand it, you haven't as yet had a definite diagnosis of CLL which is why you're seeing the haematologist. You must tell the haematologist all your symptoms because they're all very relevant and important whether they're CLL related or not.

    The haematologist will want or will have already conducted what's called a flow cytometry test from your blood sample which will inform on whether you actually have CLL. If that is established, he or she will want to know about symptoms, swellings etc. to 'stage' your CLL.

    I hope you'll forgive me for being frank Suz but I'm wondering if you have weight problems and perhaps your blood glucose levels aren't as stable as they could be. The dizziness needs addressing as a matter of some urgency because of your AF, hypertension, mild heart failure and COPD regardless of anything that happens at the haematology appointment. You already have co-morbidities which may or may not be related but if you have a blood cancer, it won't be helping those conditions. Many of your issues do sound to be diabetic complications too and if you're having problems with your feet after walking, I'm wondering if your doctor has investigated peripheral neuropathy? CLL certainly does increase fatigue but then so does oxygen insufficiency from COPD and heart failure, poor BG control and sleep apnoea. I'm only mentioning these possibilities because not all roads lead to CLL.

    I hope the haematologist can give you a definitive answer about CLL but any sudden onset of dizziness with your existing health conditions really needs addressing quickly with your GP. Your GP is the primary provider of your health care and I'd just urge you to discuss these problems rather than relying on CLL as the ultimate answer to the symptoms.

    Wishing you well. Please let us know how it goes for you.


  • Hi Newdawn

    Thankyou for your reply. I am new to this site and thought this post would be with my first which has a little more info.

    My doctor , who I have only been seeing for less than a year noticed my WBC had been consistently a little elevated for years.

    I have copies of some FBCs going back 3 years. On all of these WBC is 12.6 -12.9 , Neut are 7.8-8.9 ,and on the past three FBCs mono has been 1.1-1.2 (these are Australian readings)

    I do not know the readings from the fbc a few weeks ago but my doctor looked at it and told me she thinks I may have CLL. I told her to just add it to the list lol but she insisted I see a haematologist .

    Yes I do have weight issues but have changed my diet completely since having a brain scan three months ago which showed traces of ischemic disease that my doc said is caused by high cholesterol and can lead to dementia. I have o far lost 14kgs ☺. My sugar levels have always been perfect since being diagnosed four years ago.

    Thanks Suz x

  • I really hope your appointment with the haematologist goes well Suz though I think you strongly suspect a CLL diagnosis. Members here will be happy to support and advise you should that happen.

    Very well done on your weight loss and glucose control. It's never easy and I speak as a fellow diabetic with additional health issues.

    I'd still urge you to consult your own GP about this sudden onset dizziness.

    Best wishes,


  • Sun - I would start now, essentially outlining your medical history concluding with the newest information which has caused your doctor to refer you to a hematologist. Have one copy for yourself and one for the doctor - same with your questions. It will allow the doctor to scan over the past issues and ask questions as he/she feels appropriate as they might relate to CLL and then to look at the newest issues. I find it very helpful to have things written out for both the doctor and me to follow at the appointment.

    I also urge you to tale a recording device to the appointment. It is very helpful to be able to go home and listen to what has been said again when you are not on edge while listening to essentially a foreign language.

  • Ditto - if your doctor feels uneasy about the recording device then have your questions/symptoms written down and leave space by them to write down any comments yours doctor makes.

    Many congratulations on the weight loss.

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