[cygnetParticipant]

Hi – just lost first reply ( grrr)

I don’t know the criteria for bone marrow biopsy but my pp level was 27 at referral.

Initially at the end 2012, I was diagnosed with iron deficient anaemia. No one had an explanation for the pains I had then in my legs – I do alot of exercise but it wasn’t muscle pain. My physio/osteopath was baffled too. Throughout 2013 I had recurrent sinus/ear infections. I tried to avoid the doctors but had to  go ahead of flights abroad. In September /October 2013 my Gp referred me urgently to ENT. From there  in early 2014 I went to Neurology ( now I had pain/pins and needles in my hands too) . It was the neurologist who picked up the paraproteins and sent me to the joys of Haematology – just in time for Christmas 2014!!

I hope this helps

Take care and good luck

Cx

[cygnetParticipant]

Hi again 🙂

Do you know what your paraprotein  (pp) level was in these tests? If it is low as you said your Gp may have decided to retest and then refer you onto haematology or he may have spoken to them already.

Either way if you’re unhappy/bewildered/ still feeling unwell I would suggest you go back and clarify what is going on at your surgery.

Where I live everyone is referred onto haematology and then if the  pp level is low ( below 15) with no other symptoms patients are managed by the Gp. If higher, management is via the hospital clinic. I didn’t stay as MGUS as my bone marrow biopsy moved me into smoldering.

Don’t be afraid to ask questions – you have to be your own advocate.

Good luck,

Cx

 

 

 

[cygnetParticipant]

Hi – sorry to hear about your mum.

It may be worth speaking to one of the nurses on the Infoline – they may be able to help you.

Good luck,

C x

[cygnetParticipant]

Hi Buskerscat

I’m sorry to hear about your diagnosis and also your on going symptoms.

Although the medical definition of MGUS says it’s symptomless, lots of people who suffer from it do experience symptoms so please don’t think you are alone. In fact I recognise some of the ones you describe myself!

The leaflet Ian mentions is very informative but if you have a look at the American Myeloma Beacon website you will discover lots of people reporting on-going symptoms along side MGUS/Smoldering Myeloma.

I hope this helps

Good luck Cx

[cygnetParticipant]

Hi Mike

Great to hear from you and thank you so much for this information.

I wish you a long and happy remission!

Best wishes

C x

[cygnetParticipant]

Hi Val
Sorry to hear you and Peter are having such a tough time of it. I think it is sometimes harder for “the other half” than the patient…..
You sound exhausted. I think you need to make yourself the priority while Peter is in safe hands in hospital & try & get some sleep. Once you have done that you will find everything else feels less overwhelming. I’m not an advocate of sleeping tablets etc but if you try everything else & it doesn’t work, then maybe a short course will help you.Accept all & any help you are offered & then hopefully you will be in a better place to move forward when Peter comes home.
Sending love & hugs,
C xx

[cygnetParticipant]

Hi Debbie
Sorry to hear you & your husband are having this additional stress on top of treatment. Is your husband a member of a union – because if he is his welfare rep might be able to help him?
Good luck,
C x

[cygnetParticipant]

Hi Andy

Good to see you on here again – & even better to hear your are off on your travels again!
Have a great time!
C x

[cygnetParticipant]

Hi Jane
I take 1 x 10,000mg tablet of Nature’s Best Turmeric ( Kent based company) per day. I initially started on a half dose ( I simply cut the tablets in half ) as I read too much if you’re not used to it could upset your stomach.
I have bought various supplements from Nature’s Best for years so after researching the internet to see what some people believe can help smouldering myeloma/mgus I chose to buy from them again. I also take a high strength multivit, fish oil, & quercetin. I used to suffer alot with nerve pain/zingy pins & needles but ( touch wood!) the supplements seem to have helped with that too. For me it is preferable at this time to the prescription drugs I was offered by the neurologist & my lovely gp. I also take their immune strengthening juice Berryguard as I had pneumonia last year & would rather not have it again!!
I also eat a healthy diet as much as I can ( but I’m no saint!!)
I hope this helps
Cxx

[cygnetParticipant]

Hi Mark

One of the best stress management books I have read is The Chimp Paradox. You can dip in & out of it but I have really enjoyed it as well as finding it useful. Mindfulness techniques have helped me too .

I’m a smoulderer who takes curcumin ( plus some other supplements.) As Rebecca astutely says, I like the idea I’m being proactive. My last two pp readings have been down on diagnosis which may well be a coincidence but to be honest if it’s down, I ‘m happy-  regardless!….

C x

[cygnetParticipant]

Hi Jane

Are you on Facebook? I think there’s quite a lively Myeloma page on there  where someone may be able to help you.

Also have you tried speaking to the Myeloma  UK Helpline nurses ( number above) – they would have good advice.

Good luck for tomorrow – are you seeing a myeloma specialist? I am monitored by a general haematology clinic at the moment but I know if I needed to make decisions about (possible) treatment I would ask to be referred to a specialist centre. Again the Helpline nurses have a list of these.

C xx

[cygnetParticipant]

Hi

I’m sorry to hear about your grandad’s diagnosis – but you obviously are caring family & that support will be invaluable to him as he comes to terms with his situation.

Have you thought about contacting your local support group or attending an  Info day? That would allow you to find out more – especially via the local group. I think they are quite sociable too! The nearest group to you  be on the website on the How  we can help section.

Good luck & I wish your grandad all the best as he recovers from his surgery & comes to terms with his diagnosis.

C xx

 

[cygnetParticipant]

Hi ! I take curcumin – 1 tablet turmeric  which  is 10,000mg- daily. I started after diagnosis a year ago after researching Margarets Corner among others,

I buy my tablets from the UK Kent company Nature’s Best whom I have bought from for years – they offer a free nutritional helpline if you’re interested.

My pp was 27 at diagnosis – subsequently 21, 24, 24. I don’t know if the turmeric makes a blind bit of difference but I think it is worth a try for the relative small cost!  As well as my MGUS/ smoldering status I have cervical spondylosis & back problems. I suffered alot of bone & muscle pain before I started my supplement regime ( I also take fish oil, quercetin & a multivit) & have declined prescription drugs except the occasional anti inflammatory painkiller. I exercise 5 x a week & am more pain free now .

Hope this helps xx

 

[cygnetParticipant]

Hi

I’m so sorry to hear you are having such a difficult time. Have you spoken to the Specialist Nurses on the Helpline – I’m sure they can give you the details/numbers you are looking for. Also the  American Myeloma Beacon site may give you some more info.

Love & hugs,

C x

[cygnetParticipant]

Hi

I’m sorry to hear you are getting mixed ( as well as frustrating) messages from your hospital.

This is too technical a question for me but I would strongly recommend you call the Helpline nurses as I’m sure they will be able to help you.

For most of us ending up with a myeloma or mgus diagnosis is a long process so do keep asking any questions you have & don’t be fobbed off. I thought I was going mad or turning into a hypochondriac but I am lucky as I have a super GP  who never doubted me & he drove the process through the various hospital departments .

Good luck

C x

[Author]

Posts