Hello, I thought as ‘MGUS’ is a commonly searched phrase on the forum that it would make sense for there to be a space for those recently diagnosed with MGUS/living with MGUS as while there over 4000 diagnoses every year, people can feel alone living with it and the worry that follows as a small percentage each year will go on to develop a blood cancer such as myeloma or lymphoma.
Do you have MGUS? Are you worried about the possiblity of it becoming a blood cancer? Have you had much support from your GP, friends & family?
Hi @Joe-Bucko - I just saw your post in the introductions thread around the cause of some of the symptoms you’ve been experiencing, particularly the tingling in the hands/feet which is a common symptom of MGUS, as you may already be aware of. Myeloma UK have an infosheet on peripheral neuropathy that although aimed at myeloma patients, may also have some useful and reassuring information and tips for you too? https://www.myeloma.org.uk/wp-content/uploads/2018/03/Myeloma-UK-Peripheral-neuropathy-Infosheet.pdf
My world turned upside down in June of 2018. I had a pretty routine operation to laser a kidney stone. The following day I was at home and at around 7pm, I thought that I felt tired, I thought it was due to the anaesthetic, so I went to bed early.
My daughter woke me up at 11:30am on Sunday, but I couldn’t keep awake. I couldn’t stay awake. At 5pm on Sunday, she took me to our local A&E department.
Between parking the car and the A&E department, I’d forgotten my name and date of birth and how to walk.
I was eventually diagnosed with Sepsis and put on gentamicin as I’m allergic to penicillin. My entire body felt like it had been beaten, I developed a headache, which I still have, I have a really bad short term memory now and a severe case of tinnitus. My balance is pretty ropey now too. I also have numbness/tingling in my fingers and toes.
Another thing that happened after the sepsis was high blood pressure. After numerous ECG’s my heart was ruled not to be the cause, so my kidney’s were checked next. After my blood work was reviewe by the Nephrology department, I was notified that I had an extra protein present, which needed to be monitored.
My kidney function was ok though.
I was referred to haematology, where I was told that I had MGUS IGg Lambda.
Now I’m at a bit of a loss has to what questions I should be asking.
No one can tell me where my symptoms are coming from. Gentamicin can give you similar symptoms as MGUS. I have had further tests carried out for my tingling/numb fingers and toes, but they have come back normal and after my last GP visit it was put down to nerve damage, which makes me think that it’s the MGUS.
If anyone can help, it would be greatly appreciated.
Many Thanks
Joe
Hello Joe, so sorry to hear of your mgus diagnosis I assume you are now on watch and wait and not receiving active treatment. This brings with it a unique set of challenges around coping with uncertainty. It’s important to remember that should your mgus ever transform in myeloma, which is far from certain, you will be in the era of groundbreaking treatments and should remain positive .
I’m sure having sepsis was a very scary experience and has left you with a certain degree of anxiety so it’s important to talk to your gp about any unexplained symptoms you have. My advice would be to discuss your feelings about your diagnosis freely here in the community you will not be judged as we are all walking the same path.
I do have a unique way of looking at things, this is down to my medical history.
I suffer with Medullary Sponge Kidney (MSK). My kidneys look like sponges and contain hundreds of kidney stones, I’m in and out of hospital frequently with infections and stones, so I’ve learned to not look too far into the future, I suffer chronic pain daily. All of this has made me quite open and unaffraid to speak openly.
I do however have a very inquisitive mind and like to know what’s happening, why has something happened and what can be done.
I do seem to get things where little is known, so it’s that what frustrates me.
So I suppose it is down to uncertainty.
I don’t think that me being an engineer helps. I deal with problems every day, so I investigate why something has happened and how can we fix it.
I do really appreciate the kind words though
I am so sorry to hear of your problems with your kidneys, chronic conditions like that are very draining.
I know what you mean about being analytical because your an engineer, my husband of 35 years is a computer boy and approaches all problems on the basis of finding a practical solution and leaves all the crying and emotional stuff for me L.O.L
I’ve lost all kidney function so I’m on dialysis which sounds bad but it’s better than getting constant infections.
Sorry to hear you have been having such a rough time. I have Myeloma and some people who get MGUS go on to develop Myeloma, though not all. I was diagnosed 13 years ago and have been in remission fir 12. However the Myeloma did affect my kidneys and I have been on dialysis for over 10 years. Although I have coped well with the dialysis (I am on Peritoneal Dialysis) and do it at home every night I’ve had the occasional blip. At one point they thought I had peritonitis and put me on gentamicin. I was fine on the treatment but a few days after completing the dose I developed severe balance problems. Appparently it is a known side effect of the drug. I was referred to an audiologist who gave me exercises to do which as helped. It is still not perfect but is much better. I do tai chi and the audiologist said that was one of the best things I could do. So if the balance does not improve ask to be referred to a balance clinic.
I don’t know enough about MGUS to know if this can also cause balance problems. I was also on thalidomide and that caused the tingling but I have got used to the tingling.
Anyway hope you get some information from your consultant but worth asking them if they think this was caused by MGUS or by medication.
Hi Joe
I was diagnosed with MGUS IgA Lambda back in 2014. I also get numbness/tingling in my hands and feet. The Haematologist said that the paraprotein in the blood could cause this tingling and numbness. I was also told that MGUS is symptomless but I have constant pain in my arms and legs and also my hips and back. I have now progressed to smouldering Myeloma which the Dr said is rare. I am not on any treatment yet as it is in early stages.
I would expect that you will be monitored with regular blood tests at least 6 monthly or even 3 monthly at first as I was. You do need to tell them of any new symptoms as well. I hope you have been allocated a Clinical Nurse Specialist who you can contact if you have any concerns or questions.
I know you must be worried but do be careful which websites you check out for information. Blood wise is excellent for all aspects of information and everyone is very supportive.
Take care
Kind regards
Yvonne
Morning @Joe-Bucko - I have moved some of these posts from the introductions thread as I think it will be really valuable to anyone else newly diagnosed with MGUS. Thank you to you all for sharing your experiences, please do let us know how you are getting on.
How are those of you living with MGUS getting on? Do you have any advice or suggestions for those newly diagnosed and who may be struggling with fear and worry?
Hello, I’m kinda new to mgus have had it for about 3 yrs but my specialist only told me last July 2019. Saying that i believe i have had it longer since i was 39 i’m now 44, 45 yrs old in august, as i kept going to the dr’s for blood test saying something is wrong with me they did 3 HIV tests in a year kept saying your white blood cells are showing inflammation your fighting a cold… about 18 months later saw a specialist. since my last appointment in 2019 i have developed more symptoms, my skin especially in legs and feet get very very itchy i get tingly hot, get dry skin and peeling round toes, also my blood has become thinner it’s really noticeable even when i have blood taken it’s like water no substance to it like it was before, plus it takes ages to clot if i get a cut or scratch, it really bleeds i’m getting a little worried should i tell my GP my next haematologist appointment is in July 2020, i just want to no if i should be worried or not? Thanks in advance Michelle
Welcome to the forum @chelle151. I do not have any experience or knowledge of MGUS, but it does sound as if you could do with some advice from your GP or possibly your haematologist, especially as your haematologist appointment is a few months away. Do you have a contact at your hospital, like a Clinical Specialist Nurse?
Details of the support line are there if you need to chat to someone.
Take care, and let us know how you get on
@chelle151 Hi Michelle, wishing you a very warm welcome to our forum! Hope you’re doing okay? It’s really good that you have kept an eye on any new symptoms you’ve been experiencing. As @Pisces56 says we would encourage you to contact your GP or the treatment team overseeing your care, to talk this through with them. Do you have a contact number for either of them?
Hi thanks for chatting, i have my GP number but there a bit hopeless i had to explain what mgus is too them. don’t have the hopsital clinical specialist nurse number i’m probably worrying over nothing i usually do, but thanks sooo much for your input.
Hi, No plan i’m agoraphobic suffer from panic attacks so just get in and get out, i would like to find out what my numbers are protein level i think it’s called although the dr said there going down so that’s good, and i’m gonna mention my blood’s thin and not clotting right and my itchy feet etc, but other than that not sure what i should be asking been ignoring it and when i’m in the dr’s office my mind goes blank although i forced the dr to tell me what it was as the previous appointments he refused to so i researched and came up with light chain mgus and i was right, so that’s one for me! I try to see the funny side of things i have a warped sense of humour, but it helps keep me going thank you .
Hi, yes, welcome to our community forum. It really resonated with me when you said that your mind goes blank when you are in the your doctors office, I am the same, but I have found it useful to write down everything I want to ask - questions, fears, thoughts, feelings, symptoms, practicalities and I have also learnt to ask those follow up questions too. I also write the answers down. I am so glad to hear you have a warped sense of humour, I do too. Please keep posting how you are you and thinking and feelings. Take care.
Hi, Erica, thank you for your message it gave me a boost, us people with warped sense of humours need to stick together i think! Anyway i rang the clinical nurse specialist today no answer so left a message they haven’t got back to me yet, I’ll try again tomorrow too, I have wrote things down for appointments too in the past but i’m always embarrassed to bring the paper out , i feel like a hypochondriac which truth be told i am, get that from my Nan. Bless her… I know I have to be strong , assertive and brave, it’s hard when i’m out all i can think is i want to get home to my fur babies (cats), plus there’s no one who could come with me, i think if there was someone with me it would make me more emotional and i have not cried in front of the Doctor yet, i just feel so emotional i’m crying right now. Sorry if i depressed you I’m gonna go now thanks for listening x
Hi, I am also far more emotional since diagnosis and can shed a tear, without warning, and especially when I am fatigued. Perhaps your anxiety about being seen as a hypochondriac with your list could be perceived by you medical person favourably as you come across as being organised !!! I also like turning situations round, I think actually I love the use of words and programmes like the old ‘Yes, Prime Minister’ which is as apt today as it was when it was originally shown. Take care.
@chelle151 Michelle, I’m so sorry to hear how low you have been feeling. How are you today? and not at all, it’s understandable to have concerns if you find you are experiencing any new symptoms, and we do encourage and advise people to seek support and advice in situations like this. I wondered if your GP is perhaps able to give you the contact details of your hospital treating team if you don’t have them? take care
