mgus symptoms

Hello everyone!

 

My name is Michelle I have been dianosed with light chain mgus about 3 years ago, the reason it was discovered was i went to dr's because of symptoms of achy, all over itchy skin tingling hands and feet dizzy spells bad lower back and hip pain and very bad hot flushes thought i was going through menopause early.. They checked my bloods white cell count high and showed inflammation markers said i was probably fighting a cold kept having bloods checked for same thing as well as having 3 HIV tests done in 18 months, all clear by the way! they kept coming back as the same, fighting cold high white cell count low blood cell count so finally they decided to send me to a specialist, and 3 years later doing okay but still getting symptoms latest ones are my blood is much thinner than it used to be having had many bloods taken many times over past few years i no what my blood is like and it's definatly changed even when i cut myself it seems to takes a great longer to stop bleeding,  So I was wondering finally... could someone tell me if this can be a symptom of mgus Of my very basic understanding of the disease when the bad cells start taking over inside bone marrow they push out/ stop the good ones from making theirs cause of the lack of room, so does this mean the bad cells could crowd out red blood cells that make blood clot, therefore making blood thinner and less likely to clot is this right????? Thanks in advance Michelle :)    

  • Hello Michelle, 

    We have information about MGUS at the bottom of this page. As you are experiencing symptoms, I think it would be worth giving your specialist a ring - they will have the knowledge to tell you more and to explain to you exactly what it all means. Make sure you mention these new symptoms you have noticed, your impression that your blood has thinned and that when you cut yourself it seems to take longer to stop bleeding. 

    I hope you manage to speak to someone soon Michelle and that you get these symptoms under control. 

    Best wishes, 

    Lucie, Cancer Chat Moderator

  • Hi, thanks for chatting, 

    i have rang my Clinical Nurse at the hospital told her my worries and she said to send in blood tests so i hung up and rang dr's and they had closed for the foreseeable future (Coronavirus) so not sure what to do next she did say that if i'm right sbout my blood thinning then that could be a sign of progression. So i'm kinda stuck in limbo... 

  • Hello chelle75, 

    Oh no I am sorry to hear that... Perhaps you could try and ring our nurses' helpline on this free number 0808 800 4040 - their line is open Monday to Friday from 9am to 5pm. They may be able to point you in the right direction! It's a shame you didn't manage to speak to your doctor. Have you also tried getting in touch with the specialist you saw at the time at the hospital? It's so hard at the moment indeed with coronavirus to manage to get through to anyone. I hope you manage to get to talk to someone soon.

    Lucie

  • Hi, i hadn't thought of the specialist,i don't want to be a bother tho,perhaps i'm worrying bout something and nothing plus i'm a bit of a hypochondriac too i think i will have to think about this. thanks so much 

     

  • hi how are you doing now since you posted??

  • Hi, Sorry I haven't been in touch. To the reply I'm doing okay had latest blood results they were fine but my free light chains have risen by 30 points their 66 now and my ratio is worse, so dr said we need to keep a close eye on me, doing another set of bloods this month to see what's going on.. the dr said we hope they will go back down again, but we will see.