[emfen1305Participant]

Hi all, my mum was initially diagnosed with post operative complications and permanent nerve damage after L5/S1 disc herniantion and subsequent operation. Since then she’s had countless MRI scans and x rays, injections all to no avail. She was being considered for a nerve stimulator so they had to do another contrast MRI and was told her bone marrow was “not right”. She’s had some initial blood tests and bone marrow sample taken and had her in today for urine samples and more bloods and are calling her tomorrow to arrange for a bone marrow biopsy. They have been honest with her and said they are testing for myeloma. Her current symptoms are numbness/pain in the buttocks and leg and a drop foot which is mainly numb with shooting pains. She is on a lot of pain medication which also makes her fatigued, constipated and she’s lost a lot of weight due to appetite but we keep putting that down to the painkillers.

• This topic was modified 2 years, 7 months ago by  emfen1305.
• This topic was modified 2 years, 7 months ago by  emfen1305.

[emfen1305Participant]

Sorry having to do this in parts as wont let me post full post! Her current main symptoms and issues are persistent numbness/pain in her buttocks around her coccyx (which is fractured but we don’t know when this happened – some time between surgery and 3 months ago), leg pain/numbness and she also has a drop foot which is now entirely numb with the occasional shooting pains. She does exhibit other symptoms such as nausea, constipation, loss of appetite with weight loss and she struggles with energy levels but we put this down the sheer amount of tramadol and amitriptyline she is on which is enough to take out a small elephant!

[emfen1305Participant]

Her current main symptoms are persistent numbness and/or pain in the buttocks and legs and a drop foot which is mostly numb with the occasional shooting pain. She also has symptoms such as nausea, constipation, loss of appetite with weight loss and she struggles with energy levels but we put this down the sheer amount of tramadol and amitriptyline she is on which is enough to take out a small elephant!

[emfen1305Participant]

I don’t know why I’m posting, perhaps I am jumping the gun as she hasn’t had the biopsy yet but all of the signs are there and would explain why she has been completely unresponsive to treatment of the nerve. I’m feeling very overwhelmed by it all, I am an only child (well 32 now) and she lives alone with me being 2 hours away I am just so worried about what’s to come so just posting for support and to see if others have had similar pain that has been resolved since treatment.

[lilibParticipant]

Hi emfen,

I’m sorry to hear about your Mum’s problems and operations. As you are the same age as our children, I am guessing that your Mum is about my age. It’s my husband who has Myeloma, and I have to say that when he was first diagnosed (by Bone Marrow biopsy), I was absolutely at sea with wondering how to deal with it. My 33 year old son was absolutely brilliant – he found this website for me, and got me lots of information and literature about the illness and the different types of treatment.

Of course, I hope that your Mum does not have Myeloma. But if she does, I can tell you that new treatments are being developed all the time. It’s a bit like having diabetes – you can’t completely get rid of it, but it is very treatable, and there are many people here who can tell you how long they have had it, and they are still climbing up mountains, doing marathons and all sorts of brilliant things.

Do come back and tell us how the test goes. Once you know what you are dealing with, there are lots of people here who can support and advise you.

Best wishes,

Lili

[mulberryParticipant]

Hi Emfen,
Welcome to this forum.
I first had contact with Myeloma UK before I was diagnosed, but when tests were pointing in this direction. The charity and this place are definitely the place to come.
It is always terrifying and soul wrenching when you or a loved family member gets such a diagnosis, and a fear is that the disease is a one way progression towards death. However for the large majority of us, that is far from the case. For example I was diagnosed 4 years ago, and for the past three years have had a near normal life (or would have done without the risk of COVID). After a year of treatment and recovery, I’ve had little sign of having cancer, and I’m totally confident in the monitoring I receive from my lovely hospital team. I’m in a very different place to the one I found myself in 4 years ago. The symptoms people can have at diagnosis vary widely (which is why it’s pretty difficult for GPs to suspect). Many people have quite significant problems with bones, kidneys high calcium levels and /or anaemia by the time they are diagnosed. Many have significant pain or mobility problems. However most symptoms greatly improve during and after treatment,for example one person in my local support was wheelchair bound for some months after diagnosis, but belongs to a hiking group and digs an allotment now, 18 years later! Her story may be exceptional but more of us will survive for longer now, as new & more effective treatments are being approved regularly.
I hope your mum gets a diagnosis, whatever it is, quickly, and starts treatment, the first step towards getting back to reasonable health.

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