[angieevangelouParticipant]

Hi
Im 46 and have been struggling to get any clear answers as to whether i have MGUS or Smouldering Myeloma since the MGUS showed up in blood tests 3 YEARS AGO…. i was suffering from extreme rib pain for 6 months then was finally diagnosed with Multiple Sclerosis after paying for a private MRI.At this time the MGUS was found but it took a year to get my gp to refer me to a heamatologist. I have my blood tested every 3 months…have had a skeletal survey a couple of years ago which showed a lytic lesion in my skull which is of ‘uncertain significance’ and a bone marrow biopsy which was ‘ok ‘?.My protein levels are low and go up and down around 5/6… I have recently had blood clots in my arm which were removed surgically and at mt last appointment the heamatologist ordered more bloods and said would see me in sixweeks not three months.This appointment is tomorrow and im quite worried now that the clot was something to do with my high platelet level and maybe is connected to MM…My brother also died of a Pulmonary Embolism a few years ago….Im now on Rivaroxiban as a blood thinner plus aspirin and beta blockers. Just wondering if anyone had any pearls of wisdom to share…
Thanks
Angelina

[kpParticipant]

Hi Angelina,

I noticed you had not had a reply as yet and thought I would say hello.
Sorry I do not have pearls of wisdom to help you. I am a newbie to the Forum and just coming to terms with the diagnosis myself. It is so hard to understand this disease which seems to affect everyone slightly differently.
I find it strange that the presence of a lytic lesion hasn’t prompted treatment but if your proteins are below 30 then I understand it is MGUS which may be why you have been treated conservatively. It sounds like you have had a tough time and I hope your appointment with the Heamatologist was OK.

Best wishes

Karen

[angieevangelouParticipant]

Hi Karen
Thanks for replying was wondering why i hadn’t had any !
Heamatology appointment was ok although my notes were missing again… 3rd appointment in a row at my hospital with no notes…different departments each time…
My paraprotein is stable but have had more bloods to see why my platelets are still so high….have never had any real explanation of the lytic lesion in my skull but its hard as ive seen so many different registrars at each appt so nobody really knows my case ! Im hopeful that the consultant ive just seen will be helpful as he has a special interest in blood clotting disorders and also is friendly with my MS professor so they will now copy each other in to any new test results they have.At present i cant have any treatment for my worsening MS because of my various blood abnormalities.
Thanks for Replying and i hope you are doing as well as can be at the moment.
Kind regards
Angelina

Angelina

[kpParticipant]

Hi Angelina,

How frustrating for you when your notes are missing. It is a worry as well if they are not using electronic patient records how do they track your progress effectively?
Although it must be reassuring to know that the Doctors are going to share information about your test results. They should be working together to make your journey through services seamless and reduce unnecessary duplication of tests etc.

I have asymptomatic Myeloma and Haemochromatosis. I am lucky in that it was picked up through routine screening. I feel generally well although I get tired and as my next appt looms I am feeling anxious in case my paraprotiens up again. But this is the nature of the disease. On the thread I started someone posted it is like the sword of Damocles hanging over your head. Not very positive perhaps, but very apt.

I hope they feel confident they are managing your blood abnormalities effectively enough to commence treatment for the MS  soon.

Look after yourself and I also hope you are keeping as well as is possible.

Kind regards Karen x

 

 

[angieevangelouParticipant]

I’ve managed to put the MGUS to the back of my mind for a few years really whilst concentrating on MS diagnosis and tests and pain relief. What’s very difficult for me is that Myeloma Symptoms and MS symptoms are very similar… Bone Pain i have in various areas but i also have Psoriatic Arthritis and the rib pain could also be MS or even Pancreatitis which was discovered on my last hospital stay for blood clots but wasnt mentioned to me… i just read it on my discharge notes !. Im constantly tired and/or unwell due to MS…i NEVER REALLY FEEL ‘wELL’ and it worries me that my symptoms may well get put down to other diseases i have and not Myeloma… The consultant mentioned my Free Light Chain Blood Result yesterday and that it wasnt right but i was feeling really unwell with a cold yesterday and didnt question what he meant as i was struggling to stay awake !
I did say ‘Do i classify as MGUS still’ as i was leaving and he said yes so i suppose thats good…I had more bloods and he will see me again in four weeks so not the usual 3 month wait at least. I keep records of everything i have done/tested as i often have to refer to my own notes to help doctors who havent got any and seem to not be able to find things on computer !
Thanks for chatting to me, It means a lot…Will keep in touch.
Angelina x

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