It will be interesting to see how stopping the Hydroxycarbomide will affect your blood test results @Carly, please let us know, as @Nichola75 says the waiting is the worst.
Look after yourself
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Hi @Balders999 a great big welcome to our forum.
I have Chronic lymphocytic leukaemia (CLL) and I live with the fatigue and brain fog, I have learnt how to manage them best for me. I donāt deal with what personally stresses me well or with what wears me out emotionally, physically or practically and I do not do evenings.
Perhaps keep telling your medical team about your symptoms, their severity and how they impact your daily life.
Look after yourself
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Hi@Balders999
Welcome to the forum.I was diagnosed with MGUS 2020,IgG same as you and have been on Watch and Wait 12 week blood tests,under the advice from the Haematologist,I get my blood tests at my surgery and my GP gives me an annual check.
My paraprotein was detected as a screeing for neuropathy ,by the Neurologist ,had MRI showing arthritic spine presumably pressing on peripheral nerves.
I am sorry to hear that you are experiencing ,brain fog ,fatigue and joint pain .It could be an underlying inflammation have you been diagnosed with arthritis ,as @Erica says talk to your GP about your symptoms perhaps thats a start to look for inflammation,ask for tests .If you are seeing a Haematologist I am sure they will be keeing an eye on you ,as you say your other blood tests are OK .I didnt know what brain fog was till I had Covid in July, its not a good feeling .
Take it easy
Bannanacake
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Hi @Balders999, welcome to our forum! Iām so sorry to hear about your symptoms and your seeming lack of answers. If it would be helpful to speak to one of our nurses, then please do reach out on 0808 2080 888 or support@bloodcancer.org.uk. Best wishes, Kate
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Hi
I had a diagnosis of Chronic lymphocytic leukaemia (CLL) given to me last week, so am slowly getting my head around it. As a nurse it is very strange to be on the other side of the system.
I am not sure, at this moment that much will change as I have been unable to work due to Long Covid for nine months now. Fatigue and pacing are the new way of living.
But I have been using my time to study, slowly to become a Primal Health Coach as before all this I had changed my lifestyle and felt so well and full of energy. Once I have completed then hopefully I can work on my terms.
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Hi @Johanna1 and a big welcome to the forum. Wow, a week ago, thatās still really early in your diagnosis and I can imagine your emotions are all over the place, especially if you already feel poorly due to the long covid.
It must be really strange to be the patient this time around. Did long Covid make the diagnosis more difficult to come to?
It sounds like long covid had a huge impact on you and still is. Iām hearing lots about it at the moment - are you getting support for this? It must be difficult to determine which symptoms are from long Covid and what are due to the Chronic lymphocytic leukaemia (CLL)?
Retraining sounds as though it was a brilliant idea and that you will be able to continue working - like you said - on your own terms!
Iām glad you have found us. I wish I had found this group earlier than I did. Remember, the support line is there if and when you need it and there is always somebody here to listen and share experiences.
I look forward to learning more about you X
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Hi Nichola75
Thank you for your lovely email.
Strangely the Chronic lymphocytic leukaemia (CLL) has not been confused by the Long Covid! I had blood tests just after my second vaccine and regularly since then which showed my WBC rising.
The Long Covid then started after my third dose, and I didnāt have Covid, it was just by body reacting!
Help for Long Covid is patchy and I am sort of managing my own recoveryā¦I have definitely learnt to listen to my body and rest when I need to!
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Hi @Johanna1 a great big welcome and I am so glad you have found us.
I also have Chronic lymphocytic leukaemia (CLL) and I was diagnosed 18 yrs ago and I have always been on watch and wait so I manage the symptoms I was diagnosed with and you guessed it mainly fatigue.
You must still be in shock and your Long Covid must really be confusing matters.
I also wonder how it is for you with your medical knowledge, there is a saying that ignorance is bliss but also many people want and need to know all about their condition.
I am impressed that you are manging your own recovery, but perhaps do make sure you get all the help that you really do need.
Yes we learn to listen to our bodies but I am also a great believer of some fresh air and appropriate exercise, I am a great walker and find it helps my wellbeingā¦
It must be exciting studying to become a Primary Care Coach and as you say it will change your lifestyle and you will be able to work on your terms, what bliss.
Please keep posting, look after and be kind to yourself, you must still be in shock.
Please keep posting
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I learnt to listen to my body to. Itās a work in process but so important! Iām glad you are taking care of yourself x
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Hello @Johanna1
Welcome to the BCUK Forum.
Thank you for sharing your new diagnosis on here with us and telling us a bit about yourself. Itās often a daunting thing to do, but hopefully opens up some good peer support for you if you need it.
Sorry, to hear about your diagnosis and also, your long covid symptoms. I am sure that over the coming weeks youāll start to process your diagnosis and regain some control back, via new knowledge and extra support. Yes, being a nurse and a patient certainly is very strange!
It is great to hear that despite all of these recent āchallengesā, you have managed to turn it around and study something to help you! Hopefully you can use your course and regain some of your energy and help you to live the lifestyle you want.
You are always welcome to call our support line, if you need to chat anything through at any point in time: 0808 2080 888 or you can email us support@bloodcancer.org.uk.
Take good care of yourself.
Best wishes, Heidi.
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Hi @Carly I have been thinking about you, how are you doing?
Look after yourself
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Hi, Iām Andrew, been living with heart failure for 5 years, Feb 2022 got awarded with ET on the watch list, July 2022 to keep that stuff company got a prostate cancer diagnosis T1 low level. Still working self employed,.
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A great big welcome @Andrew3 well, you donāt do things by halves do you, gosh.
You say that you are still working self-employed, presumably if you donāt work you donāt get paid. Financial issues are so rarely talked about on here.
We share experiences and support each other, and I do not know if you find it but so often it does not matter what our diagnosis is we share similar fears, thoughts, emotions, feelings, questions and practicalities.
I look forward to hearing more about you and how you are getting on.
Look after yourself
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Ta, nice lady. Nothingās easy, even this site, āpost must be 20 characters longā why?
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Hi Erica
Thank you for your kind thoughts.
I am a little better but I have been struggling lately, I visited my GP recently who did some more investigating, bloods, examinations etc and came to the conclusion that I may have Polymyalgia Rheumatica and she prescribed steroids, they have taken a few weeks to work but I think they have helped, she has been phoning me weekly and adjusting the dosage. Now on 5 a day.
Went for my usual bloods at hospital and they have risen slightly to 777 and my white cells are still slightly raised also. Back on the Hydro also so I feel all i do is pop pills, what with usual pain killers etc and a selection of vitamins to try and help.
I still think of all the complications that come from having Covid in July and then add the menopause in Iām sure that some of my symptoms could be overlapping, you just donāt know for sure and her diagnoses is not confirmed either.
Thank you again for your kind wishes, I hope you are keeping well also.
Carly
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Hi @Andrew3 how are you doing now?
Take care of yourself
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Hi @Carly07 I have been thinking about you,
How are you doing now?
Take care of yourself
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Hi All, I am a 52 year old Mum who has recently been diagnosed with MGUS, I am currently waiting on referrals to haematology and all I am being told it is highly unlikely it will be myeloma, however all I can keep seeing is the highly unlikely.
Due to Covid the waiting lists are extremely long and I feel like I am living with my prayers of hoping it isnt.
Has anyone else felt like this, sometimes I feel alone as everyone says MGUS should not cause any problems but I am constantly in pain and feeling low.
sorry for all the negatives.
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Hi @AngelaB yes, everything you say is so true.
I remember feeling so, so alone I had never heard of anyone else of having my type of leukaemia, there apparently had been one patient at my medium sized surgery and they had died !!!
I was diagnosed at 53 yrs old, 18 yrs ago.
You say that you are constantly in pain and feeling low, have you spoken to your GP about the severity of your symptoms and the effect on your life.
You are now part of our forum family so please do say how it really is for you on here or if you would like to speak to someone the Blood Cancer UK support line is there for you too.
Never apologise for feeling you might be negative that is what we are here for.
Please let us know if you do ever get a referral for haematology.
In the meantime, it will give you the opportunity to write down all your symptoms and questions.
Look after yourself and be kind to yourself.
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hi Erica, many thanks for reaching out. I have discussed everything with the doctor and they have put me on Zapain for the pain but no other meds. These are strong and I cannot drive
and also they will not prescribe anything else until the appointment as they say they are the ones who will discuss what other meds I need to take, they are also looking at rheumatoid arthritis, again another referral, guess its just a waiting game.
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