[hoffgradParticipant]

First of all, I understand that this forum is not meant to offer medical advice, but I found myself joining simply because I feel a bit lost and completely lacking information regarding my health.

After a few years of being exhausted with aches and pains and so many other symptoms, I was just told I had CFS/M.E by my GP. I know that I was told this because she had eliminated what she believed was any other explanation for my symptoms. I have lost faith in my GP’s surgery after being spoken too, and treated like I was a hypochondriac. I even complained but was told that I should leave if I wasn’t happy. Terrible. I’ve been so weak and unwell at times that I haven’t had the energy to try to find another surgery.

After paying to see a private immunologist, three years ago, he suggested that my GP should arrange for my immunoglobulins to be tested. It was the results of those tests that showed I had MGUS. I knew nothing about this condition and whilst I’m not a worrier by nature, i obviously wanted to educate myself with regard to this condition. My GP knew nothing about it at all as I remember she initially gave me the wrong information about it. I was handed a Macmillan cancer leaflet and said that it may not lead to cancer. She must have been given more education about it later on, because the next time I saw her, she told me that my levels were very low and it may not lead to anything. I’m afraid I’ve lost faith in her completely and so I need to educate myself more, so that I can keep on top of things.

I have just had a recent blood test and I always get a print out of the results. They are confusing and unlike normal blood tests, I have no ranges as to what is normal. My Serum protein electrophoresis (XE25U) came back as “Paraprotein band present – known IgA Lambda”.

I would really value contact from someone who has perhaps had a similar diagnosis and is more informed than I am. I know if I phone my GP’s surgery I will only be offered a telephone appointment with my GP. She only works 2 days per week and I know she won’t be able to shine any light on this for me. I doubt I’ll be offered a specialists appointment.

I hope this is clear.. my health waxes and wanes and when I’m not feeling well, I get brain fog which makes it difficult to be clear.

Many thanks in anticipation

[bronwenParticipant]

We have just come to this forum having had a recent diagnosis of Multiple Myeloma. I knew nothing about multiple myeloma until about one month ago and things seem to be changing all the time e.g. the current thinking seems to be to treat MUGUS rather than adopting a ‘wait and see’ approach ….. we now know what we will see if we wait.

I have four suggestions: contact the Myeloma Society and get a copy of their ‘Info pack for newly diagnosed patients’ if you don’t have one; ask them also for a copy of ‘Your patient dairy’ look at page 28 for normal blood measurements; join a local myeloma society support group – ours has been fabulous; give your GP facts about multiple myeloma, ask for a new referral to a haematologist, and if the GP is resistant then consider changing your GP – your life may depend upon it

[hoffgradParticipant]

Bronwen

Many thanks for your post and, I am sorry you have been diagnosed with MM.

I am pretty up to date with all that you suggested, thank you. I am the sort of woman who would ask for these things anyway and yes, aware that my GP is not experienced enough with this. A specialist I spoke with recently, informed me that it is extremely commonplace for people over 50 to have MGUS, but for it never to develop into Myeloma or indeed to have any symptoms. Although yes, am also aware that unfortunately there are people like yourself, whereby there has been a development.

Best wishes to you and thank you again.

[hoffgradParticipant]

I meant to ask you Bronwen, are you in the UK or in the US? Reason for asking is that you mention a Myeloma Society, and upon doing a search, I only came up with one, which is an American site

Thanks.

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