Hubby had D&V for 48hrs beginning December, 2 days later lost vison in left side of left eye and had blurred vision, went to opticians, the referred him to A&E suspected stroke, CT scan said clear 🤷🏼♀️, but raised white blood cells he would recieve a call to see consultant eye specialist, he an he said from what he could see a stroke had happened referred him for a MRI which he's now had. During all this recieved a call from GP over raised WBC she wanted more tests done, he had them, next day had a call to say they was raised again and they wanted him to see a hematologist ASAP (don't use ASAP for nowt) now as we have patient access we/I have been trying to see what his blood results were to understand the ranges and to see if anything we can do at home to help reduce them. On Wednesday after MRI and receiving call with Hema appointment for next wk, We logged on to his PA where it says "Abnormal FBC indicating Lukemia Yes" also booked in his appointments section was a call with GP yesterday, still not recieved, We are still in shock and I'll be honest bloody terrified of telling grandparent & his parents. I don't know what to do this is beyond me.
Helpless : Hubby had D&V for 48hrs beginning... - CLL Support
Helpless
Hi there and welcome. I won’t call you Bitch because it seems rather rude.
You’ve suddenly been thrust into a scary world but try not to panic because your husband is on the medical radar now and the cavalry is on its way 😊
He has a haematology appointment for next week and you’re expecting a call from your GP. I’d chase that up because the surgeries will be closed after today until Tuesday. Obviously I can’t speculate on what has happened medically but there does seem to be some concern about his raised white blood count. This can be caused by a self limiting infection or be indicative of some kind of leukaemia like CLL which is why I suspect you’ve enquired here. They may have detected a higher than normal absolute lymphocyte count (ALC) and CLL is essentially cancer of the B cell lymphocytes. It means it undermines the immune system. Whether this is the reason for the ‘episode’ and eye infiltration, only the medics can tell you but it’s not totally unheard of.
Try to calm yourselves because whilst all this seems terrifying, the CT scan was clear and it could be that this is a longer term, chronic blood cancer that the haematologist will investigate. However, if levels are very high and indicating a more acute blood cancer, it could be they’ll want to start treatment earlier. You don’t have enough information to know at the moment and naturally feel scared.
You need family support but I think it would be better to discuss with elderly relatives when you have more information and have your own head around it. You could say he has a blood disorder they’re concerned about and are investigating. The cancer word throws people into freefall and if it is CLL, it could be a long, long condition requiring no immediate treatment. I was diagnosed in 2012 and interestingly as the result of eye issues (extreme dryness and soreness).
Please come back if you need more advice/clarification and support. Hope your husband is feeling better after his episode and that you have good medical services in your area. Not the way you wanted to start a new year I’m sure!
Best wishes,
Newdawn
Hi, thanks for the reply, Don't be worrying about the name I love it I even have jewellery with it on lol.
Chased up GP have to wait and see if they do ring hubby before he gets home, No idea why i posted so much its first time I've put it into written word, We have told a select few people but parents and grandchildren will be after we've seen haematologist and hopefully get some literature that can help explain or answer any immediate questions they have, I don't want to keep saying I don't know.
Good to hear your doing well it will hopefully show my hubby its not the death sentence we both first thought.
All the best for he new year to yourself and family, fingers crossed we get all the help and support from the medical experts and I'll hardly need to mither here haha.
xx
I personally wouldn’t tell anyone until diagnosis is confirmed - there are so many possibilities and each one has its own flavour & prognosis.
Once it is confirmed as a blood disorder ( if that’s what it is) start looking for a specialist in that particular condition.
With all heterogeneous conditions - general practitioner/ Haemotologists ( in my humble opinion) are largely vaguely informed.
Hi, Thanks for reply, the few we've told are who it could affect on a daily basis hard for it not to when they live with you, the confirmation is in his medica records & states Leukemia, as of now we still have no "Doctor" confirmation.As far as I'm aware we will be assigned a specialist not something I think you can do with the NHS, but will find out next week.
Best wishes for 2024
As you mention the NHS you are obviously in the UK. Depending on where you are a lot will depend on who you see. Although I live in London the original hospital I went to my consultant wasn’t a CLL specialist, but as I was blissfully unaware of my diagnosis I was perfectly happy. Probably no need to be concerned until your husband may be nearing treatment and then if you want to move to a hospital with a CLL specialist ( unless you are already seeing one ) your GP can write a referral to your new choice.
Colette
Thank you for your reply, that's good to know, we're in the north west so I'll put this on my list of questions.
All the best for 2024
Speculation may be unhelpful - but my reaction upon reading your first sentence, was..
D&V - symptom of current Covid strains
Optic problems - could be result of inflammation of optic nerve - a symptom of Covid
Were / are there other symptoms?
Did he test for Covid?
And, yes, Covid does cause changes in our blood counts too.
Might be worth querying next doctor - see that they consider this, as the approach to optic aspect may be rapid treatment with steroids to reduce the inflammation.
Good luck. As others have stated - pursue haematological aspects, but let the doctors work things out.
The optic aspects are more immediately concerning imo.
Thanks for your reply, no covid testing was done for the D&V as it was over within 48 hours.
It has been confirmed by a specialist that the optic problem was caused by a stroke as suspected by the optician.
Apart from tiredness he has had no symptoms, so again no covid test.
I will raise this point but on seeing his blood results in his records & the speed of his appointments, Id say its pretty conclusive.
His appointments this week are with both eye specialists and haematologists, I'd let Dr's do more if they actually followed through with appointments they make.
Best wishes for 2024
Wise to mention it, as so many fail to consider framing outside of their specialty.If scans are not finding expected evidence of stroke, the more reason to ponder covid.
The duration of D&V with covid is very variable.
83yr old friend suffered 48 hours mid December.. which is not to say that it is self limiting, unlike many a gastric bug, just a reflection of some mix of immune response, and worst inflammatory phase.
If the start was very recent, it might still be worth doing a covid test, much as false negatives are common. Optic nerve inflammation out of covid requires urgent attention.
Best wishes for 2024 and getting good answers soonest.
Thank you for your insight, he's D&V was 7/8 Dec stroke on 11th, it was the loss of vision that initiated this with a trip to our Optician and then urgent referral to A&E, on seeing specialist on 13th he did say sometimes CT scans can miss signs, but what he could see through his testing was that a stroke had indeed occurred, at not time during our 17 hour stay at A&E did any medical staff suggest or offer covid testing.
As I say the speed of his appointments has been quite quick.
Best wishes for 2024
Reading medical reports and not having the full picture can be scary! When I was diagnosed I was scared. I did not need treatment for my CLL for 12 years. The best advice I gave myself was to stay in one day at a time, even one minute at a time until I received all the answers and then looked at treatment options. I’m in the US and put together “my own treatment plan” which included a local hematologist, a CLL specialist, found knowledgeable sites like this one, put together a good support system, cut back on being a workaholic, let go of negative people in my life, increased my exercising, took time to meditate (even for 5 min), listened to more uplifting music, and spent more time being creative. Please know we are all here for you! Take care!🦋
Thank you for the reply, I agree its scary it's scarier the GP has failed to contact him since the arrival of said results even if to reassure him its not to serious.
He is a fit man no athlete I grant, but in excess of 20000steps a day for week, and we have cut back on socialising a lot since covid, working on ridding ourselves of negative nelly's. I find it good to have an understanding of anything even a small amount of knowledge so far has proved helpful.
Best wishes for 2024 x
I am going to keep my fingers crossed for a good outcome. I’ll be thinking of you with the new year!
I read all comments before replying.Nil to do as regards scary diagnoses until further medical assessments.
I just raise the differential diagnosis, linking D&V with optic nerve inflammation..
Covid as differential is being missed in UK during this ongoing pandemic far too often.
The starting points are testing for covid and alerting the medics to the possible link.. nudge them to consider this possibility. If optic nerve inflammation causes loss of vision, the urgency of action is different.
Thanks for your reply, not sure where you are or what "Nil" is and I presume we're both talking about "D&V" as diarrhoea & vomiting.
As it's been over 3 weeks now since D&V with no further bouts and apart from some tiredness, I presume we can rule out covid, but I shall mention it when we see consultant and haematologist.
As I said everything has happened withing a 21 day period and I think the urgency has been addressed with the timing of appointments.
Best wishes for 2024
Confused
CLL with CNS involvement 
Just been told my husband has cLL can anyone give some information 
Hoping to turn a corner on this long road...sorry in advance for a long intro...it's been a long road
Ibrutinib & neuropathy?
