Hi Karen
I saw the consultant yesterday. He wanted to see me early because he had been notified of my back pain and the mri. I had further bloods done (gp’s hadn’t informed him of the 39 pp–charming). Consultant wants to see the mri himself, so he’ll ring me in about 2 weeks and take things from there.
The only thing that’s really bothering me at…[Read more]

Hi Karen
Just thought I’d let you know I’ve been called to hospital early, that is tomorrow. I presume its because my para proteins rose again when GP did bloods for my back. I did ask the secretary but she said she didn’t know ! I presume the consultant will want to do a BMB which I don’t look forward to.
At the moment I’ve got awful sciatica. It…[Read more]

Hi All
Just a thought. Anyone on here living in High Wycombe/receiving treatment at Wycombe Hospital ?
It’s interesting to know what local care is.
Best Wishes to all
Susie

Hi All,
I had the result of my MRI and its good news. It just showed bad arthritis and several compressed discs as well as the compression fracture. I had convinced myself the MGUS had advanced in view of the increasing paraprotein levels.
So my next monitoring isn’t till next month and I’m going to forget it all till then and hope that the pp’s…[Read more]

Hi All.
Well I’ve had my MRI and it wasn’t half as bad as I thought it was going to be. I did put eye pads on before I went in, feet first, and I could have fallen asleep. They said it would take 10 mins but it was about 30 mins, they kept putting me further in so I hope that doesn’t mean they saw something. The results will take 2-3 days when…[Read more]

Hi All
Thank you for your replies. Sure does help having this forum to speak to people in a similar position.
Mike-I Like your idea to think of falling asleep, I could well do with the rest. haha
I believe you said in a post sometime ago that PP’s above 30 required treatment. Does that still depend on bone marrow count, ie; if its below the 10%…[Read more]

Hi All.
I’m having my MRI on Friday. Hope I don’t freak out coz I’m not keen on small spaces. Has anyone had one for lumber area, just wondered if they put you in feet first or head first.?
I had the blood results which showed no osteoparosis, didn’t think it would coz I don’t fit the profile in any way. However, the bloods showed the PP’s are up…[Read more]

Hi Jill

It was the physio that ordered the xray at my request really. I think it was the radiologist who reported on the xray that ordered the MRI. I’ve heard from my GP and its a blood test for the osteoporosis. I thought it was a scan but they only do that if blood test dictates its needed.

I will mention the MGUS when I go for MRI but if the…[Read more]

Hi Karen

Thank you for your very kind comments. I was so uptight yesterday I didn’t come on here. Felt I needed a break from it all.

I haven’t heard regarding an MRI appointment or from my GP yet. I went originally coz I thought it was my arthritis, I did explain my MGUS to the physio but I don’t know whether anyone has thought they should let…[Read more]

Hi Karen

Don’t want to hog your topic but thought I’d just let you know my latest.

I had a phone call from the physio dept regarding the xray I had last Fri. Apparently they now want me to have an MRI coz the xray showed a Lumber 1 disc fracture, and possible osteoporosis. So now I’m back to worrying seeing my pp’s went up to 36 on my last…[Read more]

Thanks all for your replies.

I’ve been to physio today. She feels this back pain is caused by arthritis but has taken xrays to confirm, so I am feeling a bit more confident that the cause while show itself. I’ve got to go back in 4 weeks for results and to see if the exercises she’s given me are working.

Keep well all of you

Susie

Hi Karen.

Thanks so much for your reply. My pain is only present when I move, which I assume is mechanical pain from my arthritis. When sitting or lying I don’t have any pain apart from my hip, which wakes me sometimes. Once I move position it goes. So I assume my pains are down to arthritis. I just wondered if the pain they talk about is…[Read more]

Hello David. Welcome. I’m sorry you have found yourself needing to join this group, however you will find a super group of people and lots of support.

I don’t think I am wrong to say that Macmillan can help you with financial advise and what you maybe entitled to. Give them a try.

Meanwhile I do hope things go well for you

Susie

Hi Jane

Yes I did have a bone marrow biopsy when I was first diagnosed, so thats 2 yrs ago. It was 2-3 %
so well under the 10% mark for smoldering as I understand it.

Quite frankly its not the disease I dread, its having my life taken over by hospital appointments, doctors and treatment. That is what would drive me round the bend.

I hope all…[Read more]

Hi Karen

I can well understand you rush out of consulting room. It comes as such a total shock. I have carried on as normal over these last 2 years, understanding that very few MGUS proceed on to become active Myeloma, so haven’t worried. But now i am beginning to do just that. It’s like sitting on a time bomb isn’t it.

Keep well and I hope you…[Read more]

Hello Karen

I read your story with much interest. Would you mind telling me what reading your paraprotein was that put you into Smouldering. I have MGUS and my last bloods showed a PP of 36 but my consultant has only increased my check ups to 3 monthly from 4.

I wish you the best and hope all goes well for you.

Susie

Tom and Ted
Thanks for replies. In answer to your question Ted, I get my bloods done a week before my consult, which I now have by telephone. As I said in my first post,when you have arthritis it is hard to know when pains are just due to that. I’m due bloods next month so I’ll wait till then before worrying.
Good Wishes to you both
Sue