Hi, I have recently been diagnosed with igM MGUS, but also have tested positive for ANAs. I am curious if anyone else with mgus have these antibodies.
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Hi @helenfwallace, thank you for your post. May I ask how you’re doing since your recent diagnosis? In case it’s helpful, we have a fact-sheet about MGUS, which you can download or order here: MGUS factsheet and download. If you’d like to talk, our Support Team are also here to support you on 0808 2080 888, and you’d be very welcome to give us a call. May I ask if you’ve had a chance to speak with your doctor about your positive ANA result at all? We’d encourage you to speak with them if you haven’t already, so they can talk you through the result in the context of your individual circumstances. I hope this helps. Best wishes, Tanya.
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Hello Helen - yes as suggested you should have some input from your doctor as to the ANA positive results - I have another blood cancer - MPN - ET - and have very high ANA but this is linked to an autoimmune condition I have been diagnosed with and not my blood cancer - you need a bit more direction on your specific results and if it needs to be looked at further. Keep us posted how you get on.
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Hi Jilly and Tanya,
When I first tested positive for ANA I was referred by my GP to Rheumatology and it was their tests that led to the igM mgus being found and an internal referral to Haematology. I havent seen Rheumatology since October 2021 and am on some waiting list for a follow up appointment. Recently GP ran some blood tests that included the immunoglobulins , Rheumatoid panel and ANA. So ANA has been measured three times in the last year, different levels and two different staining patterns. The Rheumatoid panel came back negative. GP thought that the Haematologists working diagnosis of igM mugus secondary to Early Sjorgrens was looking shaky. He thought I needed to speak with Haematology about the ANA.
I am feeeling a bit lost and a little concerned that more than year has passed and I am no clearer as to what the ANA might mean.
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I am not surprised @helenfwallace that you are feeling lost and concerned that more than a year has passed and you are no clearer as to what ANA might mean.
I was so struck by your posts that since your diagnosis you are now talking this new medical language.
I cannot help you medically, but I have learnt that being ‘pleasantly assertive’ and persistent works best for me, that is if I can actually speak to someone.
Be kind to yourself and please let us know how you get on.
Thanks Erica. I shall try my best to be pleasantly assertive and persistent (PAP) going forwards. Best wishes Helen
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Very frustrating for you Helen not getting clear help or guidance on test results. Certainly rheumatology is the dept that deal with high ANA counts as autoimmune conditions come under that specialism - and yes high ANA can indicate Sjorgens (I have Sjorgens Syndrome) although not necessarily - you need a rheum that specialises in autoimmune/connective tissue disease to get good help - along with the input and assistance of haematology - I am very fortunate under a very good hospital with good consultants so my haem and rheum liaise a lot and it was my haem’s persistance when I was really unwell that didn’t add up with my blood cancer doing all manner of tests that found the ANA problem - The rheum then took over on that side of things. Could your GP refer you elsewhere for a rheumatology dept? I know they are known to be very long waits on their clinics tho which doesn’t help. I hope your GP is good and can speed up things for you somewhat so you can get some assistance. All the best
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Yes, it is frustrating, but if I had been referred to the other hospitals in the locality, I would still be waiting for a first appointment. I think it would be better staying put with both rheumatology and haematology in the same hospital.
Best wishes
Helen
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Hi @helenfwallace I think that I would also try and keep all my medical departments under do the same hospital and paper file.
However I did have a breast cancer scare and then saw a consultant in another department and he opened up my file to write his notes and on the opposite page was a diagram of my boobs !!!
Take care
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Oh Erica,
I do hope you weren’t too embarassed.
Best wishes
Helen
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A diagram was better than a photo !!!
Hi Jilly20,
May I ask if you get eye drops on prescription for your sjoegren’s? I have been trying to get preservative free drops from my GPs which was fine until I had a medication review with surgery’s pharmacy who changed the prescription. Nothing wrong with the new drops other than I have problems sqeezing them out of the bottle (thumb arthritis). There are otc drops that I can use but I am not allowed them.
Best wishes
Helen
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Hello Helen - no I don’t have eye drops on prescription - I just use Viscotears which for me works well at the moment which I buy - and come in an easy to use tube as I know the problems with hands, hand and feet problems are a very Sjogrens thing! - the dry elements of Sjogrens are not so dominant in me, I have them but they are manageable with simpler over the counter bits - my dominant ones are joints, muscles, lungs 
. Hope your GP can assist further in something that works for you in a practical way of actually using them!
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Hi Jilly20,
Thank you for replying. The surgery pharmacist has offered me Viscotears but I tried them many years ago and they were not right for me. Will try a GP tomorrow.
Thank you,
Helen
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Hi @helenfwallace I have been thinking of you and just wondered how you are doing now?
Look after yourself
Hi Erica,
Thank you so much for thinking about me. Currently on holiday in Tenby, so glad to have escaped the extreme heat.
I hope you too are well and not melting in the heat!
Next week it is time to do the three monthly tests.
I am wondering if there are recommendations for vaccinations for people mgus. I am thinking of pneumonia or shingles. Not sure who to ask.
Best wishes
Helen
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Hi @helenfwallace that is a good question for your medical team.
Perhaps ask about the shingles one especially as there are 2 different ones now.
With my Chronic lymphocytic leukaemia (CLL) I have to have the non live new one, Shingrix, and I was the guinea pig for my surgeries training session.
I asked my GP nurses and they checked with one of their GP’s.
Perhaps that is a good starting point, otherwise your CNS, if you have one, or consultant
Look after yourself
Hi Erica,
What is a CNS?
Best wishes
Helen
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Hi @helenfwallace. A CNS is a Clinical Nurse Specialist, that is a haematology nurse. I hope you have been allocated one and that you are able to get the help and advice that you need. Warm wishes. Willow X
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Hi Willow,
Many thanks for your clarification. No I havent yet been allocated a CNS. May be this is because up until a month ago the levels of paraproteins were "unquantifiable " or may be the L&D Hospital works differently.
Thanks,
Helen
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