[vicki66Participant]

I have just had PET/CT scan results and the consultant told me that there was something in my bone marrow and my left ovary and he said he wanted to do a bone biopsy and another scan on my ovary. I know the ovary can be a cyst or other things but can something in my bone marrow be Myeloma or cancer or are there any other things.

I have a IgG of 7gl (2gl 18 months ago) pain in my legs constantly, kidney pain and a GFR of 59. There are many other positive tests ANA ANCA and 2T flairs on my brain.

Any ideas?

[purdayParticipant]

Hi Vix66,

Sorry to hear what you are going through at the moment. I cannot give any advice as I am still very new here  (still not officially been been told I am MGUS ) awaiting my next blood tests in September. At present I’m IgG  Kappa paraprotein 3. I’m 46 so a similiar age to you, so sending lots of love. Hope you can find more information to help you. Rachel xx

[vicki66Participant]

Thanks Rachel. Its so hard to get answers anywhere, I have been going round and round for 3 years. The best advice I can give you is find a good haematologist, the first one I saw was awful. I have lots of symptoms, so if you get any, tell them. I wish they had been quicker to do things but thats the NHS, they just cant do anything faster. I also wish I had life insurance and medical insurance, it would have helped a lot (get in there before you are diagnosed with anything). Hindsight is a great thing. Good luck with everything, love Vicki xx

[purdayParticipant]

Hi Vicki, thanks for the advice, I will take that on board. I’m waiting until September and see what my results are then, the Dr told me that I wont see a haematologist until something changes!  I’ve found Margarets Corner  (http://margaret.healthblogs.org/) very informative ( as well as this site). Especially the information about curcumin c3 complex! Hope you can get some answers. Rachel xx

 

[yvonneseParticipant]

I was diagnosed with MGUS just over 3 years ago after seeing my GP for what felt like “growing pains” in my arms and legs. I was referred on 2week wait and after many tests including bone marrow biopsy to have IgA Lambda. My level when referred was 11 and this increased to 13 by time I saw Haematology. Consultant. I have had regular monitoring by hospital and gp. My level fluctuates between 11 & 13 to date. My most recent IgG levels were 6 and IgM 0.4. These are quite low. Is this significant in any way and have any bearing on if there is progression? Any advice would be appreciated. Many thanks.

[purdayParticipant]

Hi,

As you can see by my previous posts I still in the ‘learning stage!’ myself, but thought I would say hello. I’m sure that someone here can give you some more advice about your MGUS.

All the best

Rachel

[yvonneseParticipant]

Hi Rachel,

Many thanks for your welcome.

I haven’t logged in for some time since diagnosed with MGUS 3 years ago. I have sort of just got on with things as it were and had my blood tests every 3 to 4 months. I am still followed up by the Myeloma nurses who let me know my results by phone but can contact them if I have any worries.

I do have alot of pain in my back/pelvis – even where I had the bone marrow biopsy is still tender. Also have pains in my thigh bones and arms especially at night. I told the nurses but they say most likely arthritis as my calcium levels all okay. It’s hard not to worry when you get pain as don’t want to appear paranoid. I’ve not had any x-rays or MRI for couple of years though but suppose they know best.

Regards

Yvonne

 

[purdayParticipant]

Hi Yvonne, sorry to hear that you have been getting these aches and pains. Yes its difficult not to get paranoid like you said about every pain you feel. MGUS is a very strange diagnosis to have and though the Dr’s say that you should not worry, its hard not to. Hope the Dr’s can get to the bottom of it for you.

All the best

Rachel

 

 

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