[grs71Participant]

Hi,

I’m a 49 year old and active married father of two teenagers, never really had any major health issues but that’s all changed in the last 18 months.

It all started about 18 months ago, when I noticed hangovers were getting terrible despite not being a big boozer. I gave up drinking yet the hangovers kept coming and I had horrible migraines that lasted days. After a couple of trips to the GP, they measured my blood pressure at 230/125, really not good at all and I’d never had a problem in the past. After a few more visits and an ever increasing dose of meds from my Cardiologist (I’m very lucky to have private health insurance with my job) my blood pressure was getting under control which stopped the migraines but I still didn’t feel good.

My Cardiologist suspected an underlying cause and following urine and blood tests suspected kidney problems, I was referred to a urologist, and he determined I definitely needed to find out what was going on. So that resulted in a kidney biopsy. Initial tests indicated diabetes but blood sugar tests disproved that, further analysis came back indicating a diagnosis of Monoclonal Gammopathy of Renal significance (MGRS). To be more precise it’s known as Proliferative glomerulonephritis with monoclonal immunoglobulin deposits (PGNMID).

I’ve recently been seen by a haematologist in oncology, had a bone marrow biopsy (not pleasant) and I’m waiting to hear if I’m going to need chemotherapy treatment.

It’s all been a shock and I’m coming to terms with the diagnosis, but it’s not helped by the lack of information about MGRS from a patient’s perspective. Hopefully I can help someone else with my experiences and connect with others in a similar situation.

Thanks

[paulapurpleParticipant]

I don’t know of anyone diagnosed with this. I suggest you join the UK Myeloma support group Facebook page as you will reach a much wider audience on there.
Obviously once you know what chemo you will be on between everyone we will have experience of all types. Good luck. You are lucky to have reached the point of diagnosis so quickly.
Regards Paula

[grs71Participant]

Thanks Paula,

I feel very privileged to have private healthcare that has opened doors, saying that my current consultants are all NHS and have been very quick to get this looked at.

It’s quite isolating to find I have a rare strain of an uncommon condition, and from what I’m told the treatment is the same as for MM. All I’ve found is a few medical journal write ups but nothing for patients of MGRS/PGNMID. I suspect I’ll be making my way into a medical dissertation before long!

Thanks

[ellenModerator]

I hope you don’t mind me replying – my name is Ellen and I am one of the Myeloma Information Specialists at Myeloma UK.
You may be interested in our ‘Early Diagnosis Working Group’- MGRS gets discussed by this group (in the MGUS group)and is a major issue for clinicians (and patients) so we have plans to produce best practice papers for clinicians which will influence our PI. Contact the email address below for more information on what we are doing currently and our plans for the future:-
EarlyDiagnosis@myeloma.org.uk

• This reply was modified 3 years, 7 months ago by  ellen.

[grs71Participant]

Ellen

That sounds interesting, I’ll drop you an email.

Thanks

[shaun3Participant]

Hi,

I’m sorry to hear about your diagnosis. I hope you’ve managed to find more information by now to help. I just wanted to say tht I was a little bit older than you when I was diagnosed with MM (52) and now 2 ½ years later I’m 1 year post Allogeneic stem cell transplant and in complete remission (MRD-). I had/have private medical insurance and in the early days I had a number of second opinions before deciding which treatment route to follow. But the most important thing I’ve found is to ensure tht your consultant is a Myeloma expert. It’s a very niche area of medicine. Actually I have been with the same NHS consultant throughout for this very reason.

Good luck

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