[josephgibbParticipant]

hi everyone, this is my first post on here,ive just been to haematologist and she thinks Im MGUS ,I’ve to go for full skeletal x-ray and bone marrow biopsy, I asked for sedative and she talked me out of it Im chicken….what your experience? also I’ve had constant dull frontal headache along with light headedness and burning lower leg, got all info on here none from haematologist. Thanks this is a brilliant site.

Best Wishes Joe Gibb

• This topic was modified 9 years ago by  josephgibb.

[yvonneseParticipant]

Hi Joseph,

I was diagnosed with Mgus IgA / borderline Myeloma in may 2014. I had been to my gp because I had like growing pains in my legs and tingling in my feet and hands. I had several bts including Immunoglobulin which came back abnormal. My gp rang me and said my tests were indicating I could have Myeloma so he did a 2week referral toHaematology. This was such a shock as I am sure you know. The Haematologist referred me for more bts, skeletal survey (which is totally painless as just xrays of various bones) and finally a bone marrow biopsy and trephine. I took my husband with me and he was allowed to be with me while I had it done. It only takes about 20 minutes . I won’t lie to you but it is does hurt. I just squeezed my husbands hand very tightly. It has to be done so the doctors can find out if you will need treatment. I was told I definitely had Mgus IgA Lambda but NOT Myeloma… although I am borderline . I have been back to hospital roughly every 10-12 weeks for blood test results. My paraprotein has gone up and down and back up again which is OK. If it rises and keeps rising that is when things could be changing. I feel like I’m on a knife edge. It really is a rollercoaster mentally and emotionally especially when due to get BT results. I am coming up to 1 year since Mgus diagnosis and if all stable will just need to see Myeloma Nurse . I only joined this forum recently too but it is reassuring to speak to people who are experiencing the same as it can be a bit isolating. Its better to let it all out than keep it bottled up. I have had some lovely feedback from people which makes me feel a little less alone.

I hope all goes well for you.

You’ll get through it.

Best wishes

Yvonne x

[josephgibbParticipant]

Thanks Yvonne, it was Thursday I went to haematologists so just waiting for appointment for bone marrow biopsy and x-rays,will let you know how it goes, thanks for your help.

Best Wishes Joe Gibb.

[yvonneseParticipant]

Hi Joe,

I know you’ll feel nervous …..everyone I have spoken to does.  Hopefully you won’ t have to wait too long so you can get the tests over with. Take someone with you if it helps. You’re no chicken I’m sure. Let me know how you go on.

Take care

Best wishes

Yvonne

[graham-cParticipant]

Personally I didn’t feel any pain at all, just a strange numb tingling sensation but I have no doubt that it can affect different people in different ways.

[CarolsymonsParticipant]

I don’t think the biopsy is that bad but I have to say I think it depends on who is doing it. I have had 2 with just a short weird sort of pain that ran down my leg, but the last one was a nightmare….she kept adding more local anaesthetic and went in a few times and still didn’t get a good sample….of course blamed my bones not her technique……so let’s hope you have a good operator and all will be fine!

Carol

[josephgibbParticipant]

Hi Yvonne.Graham, and Carol…here’s my update ,went for biopsy and skeletal x-ray,wasnt to bad although she had to go back in for more, go to see Haematologist for results on the 11th June.

Best Wishes to everyone

Joe Gibb

[yvonneseParticipant]

Hi Joe,

I’m pleased you got through your tests okay. Now its just the waiting. I was at work every day so that kept my mind off things most of the time but its hard not to worry. I do know how you’re feeling as this time last year I was having to deal with the same. Now a year later I’m still stable. I have more blood tests tomorrow and back at hospital next Wednesday for latest results.

Keep calm and carry on….easier said than done!!

Keep me posted and I’m here as a sounding board if you need to offload…

Best wishes

Yvonne xx

[tonyfParticipant]

Joe, pleased that you got through your tests okay.
To everyone, I can’t believe the differences in the way that hospitals approach a bone marrow biopsy. I attend the Leicester Royal Infirmary, in doing a BMB it is standard practice to give a local anaesthetic and to give gas and air. It really does help, it seems that I have particularly hard bones so it is a struggle for the nurse to get the sample, fortunately with gas and air I really didn’t care what was going on! Why don’t all hospitals adopt a similar process?
Regards
Tony F

[jeff605Participant]

Hi, the amount of pain seems to vary from person to person, like Tony I had mine at the Leics Royal, ( twice) with gas and air, and have had worse at the dentists. Whether it depends on the operator or bone density I don’t know. Anyway I hope yours is not too traumatic, I’d sooner have a BMB than a MRI!! Jeff

[graham-cParticipant]

I had mine at Leicester Royal Infirmary Tony Farquharson and I only had gas and wasn’t offered anything else, but it wasn’t a problem for me. I can understand anyone being nervous about it and it would be arrogant for me to consider that my experience is what everyone else should experience. If you already have problems/pain in the area then perhaps it is wise to make it known, and also if you have any concerns.

My own ‘red line’ relates to throat investigations when I ended up on the floor floundering like a hooked fish. My ‘gag reflex’ being uncontrollable. Subsequently when I was with a group having a similar investigation I made clear that it would be impossible without sedation, and everyone else had sedation too.

Presumably I’ll have another bone marrow biopsy in the future, and gas and my i-player, to occupy my mind, will be enough for me.

[Kazzam2Participant]

Hi Joe
I am a bit late saying this, but glad to hear your tests went okay, fingers crossed for you.
I am treated at Leicester Royal also. I have had 3 bone marrow test, I had a local and gas and air, the fist two were not pleasant but bearable. The most recent test was horrendous, worse than giving birth! And when nurse said that she did not get a good sample and had to go in again, I cried, I felt daft after, as I carried on a bit, but it had to be done. Afterwards they said may be I am coming down with something and it made me more sensitive. I actually think it is more likely the operator. I hope so, the thought of having it again fills me with dread. Everybody is different.

Hi to all, and best wishes for your myeloma journey.

Karen
Xx😺

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