Newly diagnosed and in the dark

Hi, I’ve recently been diagnosed with MGUS after my Neurologist ran full bloods. I’ve been displaying all the symptoms but was diagnosed with ME in 2015. I now querying whether its been MGUS all along. My problem is my GP has openly admitted he doesn’t know. I am due more bloods in 3 months & 6 months thereafter. I did the worst thing and Googled. I read lots of useful info but my GP seems to conflict with it all. I was told yesterday he cannot give me my blood levels because they are just a series of squiggly lines that haematology compare each time so I have no way of knowing the severity of my diagnosis. I have also read that MGUS can suppress the immune system calling for the need of the Spring Covid Booster & the pneumonia vaccination yet my GP has implied this is not the case. I have lived with chronic pain since 2009 & have presented at the doctors in the last two years with shortness of breath, skin irritation, peripheral neuropathy, reoccurring lumps and problems with my balance. Each time of have been given a different diagnosis. I am currently having physio and under a neurological consultant but none of these professionals are making the connection. I am so confused I really hope you lovely people can shed some light on this for me. Apologies for the long post but I have so many unanswered questions.

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Hi @Kaycie I am so glad that you have found us and dropped Google.
I will copy your post to @GemmaBloodCancerUK at Blood Cancer UK to see if she can help you medically.
The Blood Cancer UK website has some useful information on MGUS and Watch and Wait, which is active monitoring you medically at different time periods.
Medically you describe that you have had different diagnosis over the years and as consultants only look at their own areas of expertise I find it is my job to keep informing them of my complex diagnosis. I also find I have to let my GP know too.
When I was first diagnosed someone advised me to have a diarised list of my diagnosis over the years, a list of my medications, a list of any allergies, a list of any family medical history etc. as I find I am asked them frequently.
I also write down all fears, contradictions and questions I want to ask as my head goes blank when I walk into medical buildings.
There is never too long a post on here, we are just glad that you have found us.
If you would like to talk to someone the Blood Cancer UK support line is there for you.
The best thing I can say to you, you have entered the world of waiting on others, which is horrible, so look after yourself and be kind to yourself.

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Good afternoon, thank you so much for your reply & such lovely words. I have been in a revolving door of various consultations for so long now and did get to the point that I started to note everything in writing.I now have a full information pack about myself that I leave with each new consultant I see. To anyone reading this thread I can totally recommend using this method to alleviate the stress of repeating yourself each time. Some Doctors are receptive to this but sadly some aren’t. I was lucky that my neurologist did take note of the information he was offered and as a direct result the MGUS was discovered. I too suffer with brain fog when entering a medical building as the exertion of actually attending an appointment is too much for my cognitive ability. I feel your pain! I like to fully research/understand any diagnosis I am given so I can monitor it myself which is why I am struggling so much with the conflicting information I am currently receiving. I very much appreciate your help in copying my post to Gemma and the fact you took the time to reply. Take care, stay safe & thank you.

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Hi@kaycie ,welcome to the forum and @Erica has helped you with information from @Gemma.Myeloma Uk also have a support line and info on MGUS on their web site.These are the best recommended sites for information in the UK.
I was diagnosed with MGUS "offically "last September so I can relate to everything you are saying.
I am on watch and wait blood test every 12 weeks.
I am just saying hello and can write
more later .
All the best
Bannanacake

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Hi Kaycie, welcome to the unwanted world of blood disorders.
As an “expert patient” I feel riled that your GP refused to give you your test results. They are not unidentifiable squiggles that only a haematologist can interpret and I have always been given all of mine. (I was diagnosed with myeloma, the malignant form of Monoclonal Gammopathy). Having said that my GP scared me witless by saying (4 years ago) that I could be dead in 3 months, so it’s best not always to get GPs to interpret results!
MGUS blood test results are numerous, of which only some will be clinically relevant, as some will be perfectly “normal”. Which specific ones are most relevant varies to some extent between patients. Changes or stability over time will show both how well your immune system is working to destroy the monoclonal cells, and the aggressiveness or indolence of the cells themselves.
There is a study taking place in Iceland ISTOPMM where everyone over 40 was asked to take part to assess the incidence of MGUS, which over time will show accurately what percentage of patients go on to develop blood cancers. The study has demonstrated that MGUS is much more common than it was previously supposed, and that real life outcomes are better for the small percentage of those who do go on to develop blood cancers if they are picked up at the MGUS stage.
There is quite a wide overlap with other health issues, I was diagnosed with Hashimotos thyroiditis at the same time. Iny case I think the chronic inflammatory processes were the link.
Best wishes Jane

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Hi, Thank you for taking the time to reply and the useful information. I’ve got far more help from here than my own GP. Sorry to hear you are in the same boat but from a selfish perspective its good to talk to people who understand. Good luck with your next bloods. Look after yourself.

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Hi Jane, I’m so glad you think I should get my results too, I feel like I’m banging my head against a brick wall. My GP is making out that its a need to know basis and I don’t need to know. I am now waiting in hope for an appointment at haematology so I can get some answers. I don’t think its unreasonable for me to want to know whats going on in my own body. Thank you for explaining about the bloods, it means I can go prepared with the right questions. I do appreciate you taking the time to reply, take care & stay safe.

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Hi @Kaycie yes, knowledge is power when we feel so powerless.
Early after my diagnosis I was told to take responsibility for my conditions, I have found this so useful when I have separate consultants for separate conditions. They are the experts for their own conditions, but I have found often they do not take other conditions or medications into account.
I used to joke that maternity was the only department that I was not under at my hospital.
Yes, our forum family are such a support aren’t they.
Please look after yourself and let us know how you get on.

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Hi @Kaycie ,this is me getting back to you .
From the start I asked for my blood results myeloma have an MGUS diary and also a diary for Myeloma so you can chart your progress.
I didnt ask my Dr I just asked the secretary to print out and I collected them ,then with covid sent by e mail.It is your right and the results arent "squiggly "they are printed numbers giving the size and name of your paraprotein,mine is IGg Kappa .You will also have your FBC and Blood Chemistry to see how that is ,its all a balance and variable .
Mine was discovered after a screening from the Neurologist (who I was seeing because of neuropathy)and it was very low but has increased over the past 3 years thats why I am on watch and wait as described very well by @Maple.
I found it very helpful talking to the support Nurses on the BCUK support line and the Myeloma UK Nurses who can help you with what questions to ask but do try and get your results so you will know where you are.
I think on this forum we are all in one boat or another thats why its so good to be able to share our different experiences and give support.
Thank you @Kaycie for your good luck wishes, its 5 weeks away :blush:
Hope you dont have too long to wait yourself.
Bannanacake

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Hello @Kaycie and welcome to the Forum, I can read you are receiving lots of support and expert advice from our Forum community who are wonderful. @Bannanacake is brilliant to refer you to Blood Cancer UK webpages for MGUS Monoclonal gammopathy of undetermined significance (MGUS) | Blood Cancer UK and our colleagues at Myeloma UK do excellent information sheet https://www.myeloma.org.uk/documents/monoclonal-gammopathy-of-undetermined-significance-mgus-infosheet/and a patient diary which you may find useful for tracking and evaluating any symptoms .https://www.myeloma.org.uk/wp-content/uploads/2022/01/Myeloma-UK-MGUS-Diary.pdf This could also be good to give to your GP for guidance too? I would stick to these websites as going further afield can cause unecessary worry.
Can I ask if you have spoken to a Haematologist yet or has it been your GP only that has spoken to you about MGUS?
You are completely within your rights to request your blood tests and the information I have given you will help you with these and I suggest you ask for them again from the GP.
In regrads to your COVID vaccine status as an MGUS patient it is worth looking at this information by Myeloma UK https://www.myeloma.org.uk/wp-content/uploads/2021/10/Myeloma-UK-third-COVID-19-vaccine-dose-letter.pdf
I suspect the reason that the GP has not considered you for the Spring Booster is that MGUS is not a malignant disease and that potentially you have blood counts within the normal parameters. This is not to say that they shouldn’t consider this information.
There are many understandable questions you have so please so contact the Support Line How to contact Blood Cancer UK | Blood Cancer UK and one of us will talk this all through with you.
Kind regards
Gemma

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Hi @GemmaBloodCancerUK. Thank you so much. Everyone on here has been lovely. The information and kindness I have received has been very reassuring. I would like to thank you for all the useful links, I have opened each one in a separate window so I can read them at my leisure. My cognitive function is impaired so all this information will take me a little longer to digest. The one thing I find very sad in all this is that, at a time when none of us are feeling on top of the world, we seem to have to fight to be heard. I have requested all my patient information which I am collecting today. I have only spoken to my GP who has openly admitted he doesn’t know whats going on but even when I pushed for some expert advice he still seemed to think it not necessary. How can he make that judgement call when he openly admitted he doesn’t know the answers to my questions. I persisted and his response was “I will write to Haematology and ask if they will see you but I’m not sure they will”. I now find myself fingers crossed hoping that they see the importance of this to me and send an appointment date through. It may be that I am perfectly fine, which would be brilliant obviously, in which case why did the neurologist diagnose MGUS in the first place or it could be there are answers I need to hear. I just don’t understand why I’m having to fight for information. Either way I will update this wonderful community as soon as I know. Thank you again to you all.

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Hi @Kaycie I am so glad to see your post and know that your GP is writing to the Haematologist .In my situation my GP did just that and received a whole load of info back advising him what to do .In my case its watch and wait blood tests every 12 weeks.There is no treatment for MGUS other than watch and wait ,if the paraprotein goes over a certain level or if you develop other symtoms eg ,swollen glands,enlarged spleen ,kidney problems then you are seen , also my GP checks out for any changes. Hope thats not more worry for you .!Sounds to me like youre on the right track and @Gemma has sent you info re the covid vaccine from Myeloma UK.I meant to say I received an invitation to go for mine from NHS Scotland as they’ve sussed the MGUS was a bit of a surprise but hey ho ill get it .If you can find out the name of your paraprotein it would help you understand which category you fall into .You say you have neuropathy?MGUS does cause neuropathy with one of the paraproteins ,that is why and how mine was discovered by a Neurological screen but I have IGg Kappa which isnt the one that caused neuropathy, however Ive been reffered back to see my Neurologist to check me out again.
I have arthriris in my spine which presses on the peripheral nerves which is thought to cause mine.
And so on ,hope this helps unravel a bit for you ,it sounds as though yiu are getting somewhere and well done for stating your case.
Bannanacake.

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Hi there, unfortunately what you saying seems part/parcel off the Medical profession (not all) but only can reflect on my nearly 7yrs journey.
Just to Add i have Guillain barre syndrome/multifocal motor neuropathy, essential tremor in both hands, found also a condition effects the heart.
But last 6months off horrendous back pain hip pain rib pain, had bloods done.
Phone calls Doctors "you got mgus bye wotchin wait " :thinking:Thats it however these symptoms are for MM .
Personally I keep going with the Doctors let them know i still here ,otherwise get lost in the system.
Agree can’t help googling and wondering
Regards Kevin

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@Bannanacake thank for again for taking the time to listen and respond, its really appreciated. I will post an update as soon as there is one. Hope all goes well with your bloods and the vaccine. Have relaxing weekend, take care.

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@Kevin1 sorry to hear you’ve been on such an awful 7 year journey. We can all hope that one day there are enough medical professionals so we all get the support we so desperately need. I cannot fault the NHS for the treatment I have had to date really, I just wish with all this modern technology ALL records were updated with explanations so each medical professional can see the affects of each condition on one individual. Mine symptoms definitely cross over but apart from me no-one has realised that yet, lol. It also seems postcode relevant. Some parts of the UK seem to be able to access more of their records than others , its all very random. Keep making your presence felt with the GP’s its the only way. Try not to Google too much, there are some very misleading sites out there. Take care, Stay safe & enjoy your bank holiday weekend.

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Much appreciated your positive reply.
Will keep updating when have any information

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Agree. This sounds like another case of a GP fobbing off a patient. Sorry to be cynical but that’s from my own experience of GPs. When I get my blood results I get my own levels and a range that the normal levels should be.

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Hi @Catcher, Sorry to hear you’ve not had great experiences of GP’s either. I’m working on trying to get my blood results even though it seems I’m have to fight for it. I will post on here when I know more. I hope your GP experience is more positive next time. Take Care.

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I’ve found blood cancer UK to be a great reliable resource. If they don’t reply immediately it is often because they are double checking, finding a good source for you that puts things clearly and they always do get back. I can understand GP’s not always knowing for every situation but I think sometimes they therefore their advice is not spot on. In one case recently Blood Cancer asked me first if it was OK to follow up/contact GP/ include me with similar queries and it did seem to be a trigger to the GP getting the right info and acting on it. I agree; confusion is the worst and I’d rather the GP admitted not knowing than perhaps give wrong info. I’m gradually understanding more and wishing I’d chosen Biology not Physics and chem at school. Good luck and glad you have found this community.

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Hi,

Get haematology to send you your blood results every time you do the bloods and bense Jones test. I was diagnosed last year and my last bloods taken have risen so I got another mri bone scan last week. Join Mgus group in face book that’s a big help to me and also this group too. No one know either we will go to SM or Mm. Mgus is a cancer cell but has quite reached the bad stage although they say it’s pre cancer bloods. I’m the same as you I have Athritis and other illnesses and I think I have fribromalga as my body is so sore and it’s getting worse alway have anemia or alway borderline and also on folic acid. Could not work full time now due to it all. But it’s a hard call trying to understand it all.
Hope you get the info you need
Edwina

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