FRUSTRATION


HI and peace to all

I have now had my results on the 10 .8.11 from the haematologist I HAVE MGUS now my paraprotein level is 11 kidney, calcium, haemaglobin, fine.
He told me they are good levels and not to keep going on the internet for info about it (who will educate me and make me feel I am not alone )
As he is 99% sure I am clear of meyloma he also said people with MGUS dont have pain. but my blood have to be checked often.

I spoke to him about the years of pain in my feet and legs which have worsened and I need answers my feet have me worried due to the excruciating burning stabbing aching shocks
till I cant walk sleep or sit without crying or being frustrated.

He now wants me to have a bone marrow and a full body scan to check my bones I told him I was told I have nerve damage 27yrs ago which came only with the flu and later stressful situations but since 2006 it is every day and getting worse
I told him I have been diagnosed with chronic fybromyalga or chronic wide spread pain. By a rheumatologist. The rheumatologist says complex woman in his report

I think they are missing the link somehow they need to check my nerves in my feet by someone who specialises as this is the initial diagnosis by a GP without tests that was so many years ago.

I also had an MRI on my kneck and head today for the rheumatologist
and will be having hydro from next week which never worked in the last instance of seeing other rhematologists two years ago .
who said nerve damage and cocydenia and discharged me knowing I had levels of MGUS and did nothing and said nothing.
If I could afford it I would go private I am in such a mess rifght now as I also suffer from mental health issues

Peace

I've had the bone marrow & strongly suggest you speak to all involved in getting sample. Make sure they understand this:

It is a bearable test to have done 1ce by skilled technicians. No one can dig out more on subsequent passes the same day without causing longterm pain. Lots of pain, long lasting.

I sometimes worry that I am Obsessive/Compulsive with my one-time teaching perspective, so please know that I respect you & believe you can make adult decisions. Please really investigate bone marrow biopsies if you've never had one.

Sorry you can't get more definite results. I've had chronic fatigue & occasionally someone over the past 10 yrs has mentioned fibromyalgia. They've mentioned all sorts of dis-ease possibilities. But, none want to commit of course. So you can let our new member thread dry up if you want. Or not--it'll be our " Let's 'do' coffee." I'll catch you wherever!

Nubiene

Hi I'm Donna, and I have fibromyalgia. I've had the excrisiating pain,
like you talk about.

I Have taken medication for mine. One I take is a herb called

magnesium, and gabapentin. I also take iron for a deficiency.


I also found that if I soak my feet in the johnson's foot soak,
it really makes them feel better.

Donna