[angieevangelouParticipant]

Hi, My name is Angelina i'm 45 and a single parent to a 15 yr old girl with identical twin daughters of 21 and MGUS was diagnosed last year whilst having blood tests after 6 MONTHS of Rib Pain… eventually i paid for an mri of my thoracic spine after an orthapedic consultant suggested it ( i didnt want to wait for months as i was in a lot of pain…) After the MRI showed signs of MULTIPLE SCLEROSIS i had a lumbar puncture and brain scan which confirmed MS.The blood abnormality was pretty much ignored by my GP's as my doctor was off sick herself…after several requests to various other duty doctors for an explanation of IGA Lambda that was discovered in April 2011 i finally managed to get a doc to write to the heamatology consultant and i was given an appointment within a week ! Have continued to suffer with rib pain plus hip shoulder and back pain now too.I was given a skeletal survey in May and it took till july to get a report back on it…The registrar had said the xrays look fine to her and discharged me from clinic to have blood tests on a six monthly basis at my doctors.The next day she rang me to say that the report had come back and they had discovered an ill defined lucent lesion on my skull so they would not discharge me and see me in 3 months.Had another heamatology appt in Oct with yet another registrar who said they would see me in 3 months again until i said that i was concerned that i have the lesion on my skull and have many of the bone pain symptoms of Myeloma… I am constantly tired and in pain from the MS and the symptoms of both conditions are very similar and i felt that this was being ignored somewhat… She said she would discuss with my consultant and rang next day to tell me i would be having a bone marrow biopsy the next week… had this two days ago and am now nervously waiting for results…Although i have not been diagnosed with Myeloma i wanted to share my story and see if anyone had any advice or similar stories… My big brother died due to a catalogue of miostakes made at the A&E department of the hospital im attending so i feel i have to keep on top of my health myself and if i hadnt i wouldnt have even seen a heamatologist this year… a year after protein was discovered…is this normal…i feel much better now that i have an outlet for my worries…. Look forward to being in touch with some of you on this forum. Angelina.

[keznmelParticipant]

Hello Angelina,

I'm sorry that we meet this way. You do seem to have a lot to deal with at the moment and i appreciate what a very anxious time this is for you.

You say that you have had the bone marrow biopsy – have you had the results now? As far as I am aware, this does give an accurate diagnosis of Myeloma. It is my 39 year old partner who has MM but as I am right by his side along this journey I know how daunting this all can be. I know when we were told about Melvin's illness, I came home read everything I could find and I fell to pieces! Melvin is the kind of person who shuts himself away and doesn't want to read anything – so relies upon me greatly in this area.

I'm sure that when you find out the results, the hospital will give you all the information that is relevant to you. There is so much treatment for Myeloma – never give up hope.

I hope to hear from you soon and I hope you are well.

Lots of love Kerry xx

[angieevangelouParticipant]

Dear Kerry
Thanks for replying it's good to be in contact with someone who understands… Am waiting for results of Biopsy which hopefully will be back by Friday…Have been in a lot of pain in hip and back after procedure but went to doc yesterday and he said it's probably bruising deep down which hurts when i move my muscles…When was your partner diagnosed ? Hope he's doing ok at the moment…it must be very difficult for you both and i send you lots of good wishes…
Love
Angelinas x

[ElizellenParticipant]

Hi Angelina!

Welcome to the club none of us asked to join. I was lucky in that mine was discovered after a few months of back pain when my GP saw some reason to get blood tests done and the care of my local hospital has been nothing but exemplary.

I hope things go smoothly for you from now on. Have you had the results of your BMB yet?

Love
Eliz
XX
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