Hi @Franko, I think it is a combination of having a blood cancer and the lockdown have meant my emotions are all over the place and an ache or pain, lump or bump and my anxiety sets in. I was never like this either, I did not have time to acknowledge feelings I was too busy going through life on autopilot.
Hi,
So had my appointment and whilst positive, it was a strange appointment.
Think the haematologist was taken aback by my knowledge of the subject having read up and not hiding under the table in denial.
He said to me my Paraprotein was too small to quantify, but hadnât previously measured my light chain.
He first said that he thinks I have MGUS which shocked me, obviously after he diagnosed me with it!
He said he doesnât think the Paraprotein was causing the numbness I have (not a surprise - despite up to 50% of IGM sufferers having these symptoms and studies showing this ) - but then proceeded to talk about Anti Mag and POEMS that both have numbness as a symptom. Also asked me lots of questions about swollen glands and checked me over and didnât seem overly concerned.
Said if the bloods show nothing, my GP will need to refer to Neuropathy.
He ordered blood tests for the above as well as Lymphoma. Obviously I am a little concerned, but taking this as an opportunity to get help if required.
The one concern I have is that he told me I am not extremely clinics vulnerable to Covid 19, but then ordered tests into a mild possibility of a serious illness. Surely I should be protected until we are sure? I have a child with profound autism that depends on me. I find this extremely upsetting. Like they are gambling with my life. My work wonât let me work from home without a letter showing extremely vulnerable.
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Hi @Kev, again that range of emotions we seem to go through.
At least you got a gold star for your knowledge on what unfortunately has become your specialist subject.
Did you question the haematologistâs thought that you were not clinically extremely vulnerable to Covid?
We await the results of the tests he ordered.
This must be so much more worrying and upsetting for you because you are also a carer for your child.
Take care we are all here to support you and if you would like to talk to someone you can contact the Support Services Team on 0808 2080 888 (10am-7pm Monday-Friday, and 10am-1pm Saturday and Sunday) or via email at support@bloodcancer.org.uk.
Please let us know how you get on and stay as safe as you can all of you.
Hi @Kev hope youâre feeling ok. Itâs good to hear that the haematologist has arranged further tests for you. Totally understandable this is concerning though, do you have much support around you?
So understandable you have questions around being classed as CEV whilst you undergo these tests and investigations. Have you explained your work situation with the haematologist and asked him if he could put something in writing if he advises you to work from home while you wait for results? Furthermore, have you spoken to your employer about the investigations and tests your undergoing? Is there any information we can send you that you feel might be helpful for you to send to your workplace to help inform them of your current situation?
In case itâs helpful for you @Kev, thereâs some information on this page of our website around looking after yourself if youâre high risk, which you might want to take a look at - https://bloodcancer.org.uk/support-for-you/coronavirus-covid-19/looking-after-yourself-staying-home-shielding/
Do remember weâre only at the end of the phone if you want to chat this through!
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Hi,
My employer is a huge business and unfortunately they have process in place and I at present donât fit into any level for them.
Anything I could give my employer would help.
MGUS alone means you are 2.4 times more likely to catch infectious diseases like Covid 19.
Itâs a terrible situation to be in.
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Hi @Kev, it sounds as if you are in such an anxious place. I remember you saying you had had therapy before and would like to be able to be stress free. I wonder do you think it might help you again. Sometimes I find family and friends just cannot understand what I am feeling and thinking and I just need some outside help.
I know you wanted anything that you could give your employer, you are far cleverer than I am at finding and printing evidence from the internet.
Have you had the results of your blood tests to see if you need a referral to Neuropathy yet?
We are here for you and if you need to speak to someone you can contact the Support Services Team on 0808 2080 888 (10am-7pm Monday-Friday, and 10am-1pm Saturday and Sunday) or via email at support@bloodcancer.org.uk
Take care.
Itâs odd. Since my blood tests last week I have had terrible brain fog. Just the worst.
Not sure if itâs linked to my B12 seemingly starting to make a difference or anxiety.
No results at all. Nothing. Zip !
I may call someone, problem is it always makes me unhappy firstâŚ
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Hi @Kev, you seem to have such a good insight into the process of your thoughts and feelings.
With my âbrain fogâ I just have to write everything down, especially questions I want to ask medical people.
Since my diagnosis I do not deal well with what personally stresses me out.
My fatigue can come on by me overdoing it stress wise, emotionally, physically or practically.
Waiting for results is the worst stress for me, so I have to make that phone call in the end and at least I feel I have done something, no matter what the outcome.
Please keep us posted and be kind to yourself.
@Kev
Hi there Kev? how have you been?
It sounds like there has been quite a bit going on for you, and as you say, it sounds like there are challenges at work too. We do hope youâre okay, and also wondered if you may have come across our employer fact sheet at all: https://media.bloodcancer.org.uk/documents/Employer-fact-sheet-Living-well-Blood-Cancer-UK-Nov-2020-v2.pdf ?
We are really encouraging people to share this with their workplace, it can really help them get a better understanding of blood cancer in general and why people need to be careful, but particularly so during this time and with the risk the virus.
We hope this helps Kev?
Su
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Clearly I was right to worry. Now diagnosed with Covid 19
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Oh, @Kev, thatâs rough, how are you feeling?
So many emotions. Angry. Angry that as my son is extremely vulnerable heâs at risk.
I feel rough to be honest, itâs like a bad flu. I started with a bad headache and was tired. By the second day my nose felt a little funny so thought it wise to speak to someone.
The Covid line passed me to a gp, spoke to me for 55 minutes obviously had my records and got me an immediate test. Got a result 9 hours later.
Really fed up.
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Oh, @Kev, I bet you have so many conflicting emotions and I would feel angry too. Of course you are worried about your son and family and Covid is scary and that on top of your diagnosis and all your current symptoms.
We are here to support you and please let us know how you get on. Take lots of care.
Hi,
Update - I have now been diagnosed as having a high count of Anti Mag in my blood.
Apparently itâs very rare. Other other bloods were fine.
Been referred to a Neurologist
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Hi @Kev, thanks so much for the update and I wish you the best when you see the neurologist. The waiting is the worst. Take care and stay safe.
My dr wont give me b12 as its just above the minimum, my paraprotein levels are managed under the Dr, so i dont know if i can do anything, also have a weak ANA blood test result, what can i do if anything?
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Hi @Jocart great that you have joined our forum and had the courage to post.
Interesting question you ask.
I will copy your question to the Blood Cancer UK @BloodCancerUK_Nurses, but personally I have learnt to clearly write down my questions and be pleasantly assertive and not leave until I have the answers I need.
Personally my Dr has said to me that he takes much more into account than just test results.
Perhaps finding out your Drâs thinking process might help you.
Please do let us know how you get on and look after yourself
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Hi @Jocart,
We would agree with Erica, to perhaps write down questions you have for the doctor so that you can get the most out of your appointment. If you are having side effects that you would usually experience from low vitamin B12 levels, we would advise you to inform your doctor how you are feeling, or could even ask for a second opinion from a different doctor as itâs important that how you are feeling is taken into account as well as blood tests.
If you are concerned about paraprotein levels and your ANA result, you could perhaps ask for this to be repeated in a few weeksâ time and express any worries or concerns you may have/ ask for guidance or referral to the haematology team if you are not already under them.
For further advice or support, please do not hesitate to contact us on 0808 2080 888
Take care,
Emma (Support Services Nurse)
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