[vincentoParticipant]

Recently confirmed as suffering with MGUS after having had bone biopsy and blood tests.

Was told that this has no symptoms. So my question is:

I attended the GP after suffering fatigue, breathless whilst doing any physical activity, profuse sweating, bone aches and incredible headaches where the sound of my heart is so loud it is almost deafening. I feel confused easily when having to make decisions.  I am a 49yr old and have ridden bicycles competitively, though unable to ride at present because of this. I am unable to do my job and it is having a huge impact on our lives. I am not overweight or drink too much. Very active life and up until now have always been fit.

There is no cancer damage within the bones or elsewhere, just high M Protein. I do not have my blood results to hand though realise I need to ask for a copy.

So, if there is no treatment to speak of…. what on earth do I do in terms of regaining fitness? My GP is running more tests but admits he has not heard of it before.

Haematology consultant said that my symptoms were nothing to do with MGUS and to return to my GP for further investigations…

Reading the web, there are many people suffering the very symptoms I have yet there seems to be something getting missed in the diagnosis… can anyone point me in the direction to get further information.

Feeling utterly frustrated, elation at not having full blown myeloma was lost on me, I feel despite the diagnosis I am no further forward in finding answers. Thoughts anyone??

 

[jason42Participant]

Hi
<p style=”text-align: left;”>thought I’d reply as your situation sounds fairly similar to myself although I have now progressed from mgus to myeloma. Like yourself I was fairly fit – played football, went to gym and play golf.  Was diagnosised with mgus 6 years ago, protein levels high, bone marrow levels elevated, no bone pain, fatigue present. Was breathless as well (couldn’t play football without thinking my heart was pounding out of my chest and felt like it might explode) and this has got much worse over past 18 months. Doctors didn’t pay much attention to breathless but I consistently mentioned it and recently they have done more tests. Specifically the tests were EEG, echogram, cardiac blood tests. From doing these tests and seeing a specialist they discovered I have  pulmonary hypertension (artery narrowing between hear and lungs). At present there is no conclusive link that having myeloma caused this as it isn’t a usual symptom or complication from having myeloma. The heart and lung specialist is fairly certain there is a link as they couldn’t find any other reason. And he said he has seen it in other blood disorders though rare. The haematologist is more sceptical and on plus side has run more tests looking down different avenues, unfortunately had lots of tests. I have started on medication that has helped with breathless and now have a clear idea of way forward. Sorry for the novel!, not wanting to alarm you with all this info but would advise you to keep on at your doctor until they find the cause of breathlessness. I knew myself something wasn’t right for a long time  but Didn’t push hard enough at the time until it got really bad.</p>
<p style=”text-align: left;”>Need any further info let me know. It’s quite difficult to summarise it all.</p>
<p style=”text-align: left;”>best of luck</p>
<p style=”text-align: left;”>Jason</p>

[vincentoParticipant]

Thank you for your reply Jason. Appreciated.

Yes being breathless and fatigued (possibly because of the breathing difficulty) is utterly frustrating. Thankyou for encouragement to pursue this further and your case highlights that the medical teams do need to be pushed to find all the answers..  Thankyou. I will keep pushing as my current condition can be improved I am sure. Thankyou. Vin

[wilma130Participant]

<p style=”text-align: left;”>Ok so my son 35 youngest patient his consultant has seen with mm.been in hospital 2 weeks now..morphine paracetamol drip nothing is working..saw him today looks worse now.. had mri today and sounds like he needs radiotherapy asap my heads melted.so confused by its gonna b ok in few days to two weeks in hospital and two mths of pain befor hospital!!</p>

[vincentoParticipant]

Thankyou for responding Wilma and send good luck and best wishes to your son. So young.

 

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