[TheWifeParticipant]

My husband (aged 49 at the time) was diagnosed April 2012. He underwent CTD and then a stem cell transplant. I know they said it would take up to 6 months to recover- it's now 9 months (since stem cell) and over the last few days he has had pain in his shoulder. When diagnosed his Para proteins were at 70%, so pretty extensive and to be honest he's still in a lot of pain. It's just a niggle at the back of my mind – he's on heavy duty pain relief (oxynorm and oxycontin and a suitcase full of supporting drugs)and I am thinking his shoulder is more than a trapped nerve. We are at the pain clinic tomorrow so I can at least trot off to the clinic and ask them to bring his normal appointment forward. Am I just being paranoid? I don't want to talk to him or the family about this as I don't want to upset them. I only registered today – but have spent the last year plus reading through the forums and got a lot of strength from what everyone.

[EttaParticipant]

Hi firstly welcome sorry your husband is having a lot of pain. I to thought the worst when my arm and shoulder started aching,but I have started some physio and if it doesn't work they are going to unlock it with key hole surgery.
Try not to let it niggle at you I know my husband worry s about me hope you get an appointment soon.
Regards Etta .

[eveParticipant]

Hello The Wife

Welcome,sorry there is no name,my names Eve,and in a very similar position,except we know its back,how quickly it is going we do not know,Slim has another BMB today!!!.three months from his last one.

Please have no secrets between you,if he is in pain he is thinking the same!!!! Be open talk it is the only way to get the facts,it matters what you two think,peace of mind is a wonderful thing,not knowing is an awful position to be in, I would rather go with my instincts I do not mind being proven wrong,infact I would be very happy!!!,but I know my husband better than any consultant.

The blood test normally show change,this is we're it should be picked up!!!,but if it is not and you still have doubts ,tell them how you feel ex rays show damage,but places like shoulder blades do not have a flat surface so they are hard to define!!!!

As a BMB is the only sure way of telling with my husband,I pushed for it,and was proven right,what I did not expect was having to wait another 3months for another before they will consider treatment!!!! I know they are saying to me any other test will not make any difference to the situation and I agree,but it would confirm the situation,and not leave us in a situation of waiting over 3months in limbo.

My advice is tell them you are not satisfied ,and ask for BMB to be done as it is the only way to confirm Myeloma is in the bones. Eve

[TheWifeParticipant]

Dear Etta

Thank you! just mind tripping – he's had his back done (6weeks ago) and is only just starting physio now – so a trapped nerve until otherwise declared 🙂

[TheWifeParticipant]

Hi Eve

Sorry to hear that it's back from Slim – I hope that his treatment goes well.

You're right – honesty is the best policy – and normally this is where I'd be – but I just can't say it loud for some reason. I'm thinking it and so is he; in actual fact I couldn't sleep last night going over it in my head. The problem with my lovely man is that his MM is non-secretary; obviously there will be the other makers in his blood count, the last one was ok. Today was just the pain clinic and he said unless things get worse to wait until his next clinic appointment (2.5 weeks) but to get back in contact with the MM Doctor ifs we are worried before then. There's a scheduled MRI in 2 weeks so fingers crossed.

I think it's the un-known and I know that many people spend years in and out of remission, it's just the thought. If it happens we will soldier on and deal with it. Crickey – am babbling!!! Don't mean to; my brain is working faster than I can type 🙂

I hope that all goes well with Slim – thank you xxxx

[TheWifeParticipant]

Rash appeared down his arm. Went to see GP and he's been diagnosed with shingles! Apparently quite common in mm sufferers. Aciclovir re-started (was on this after the stem cell transplant, but it was stopped after 3 months). His mm clinic have also said that if at any stage he's worried they will see him early; it's only a couple of weeks away so we'll see how he goes. Never realised how painful shingles could be – or that he was even at risk!!!!

[Author]

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