Recent diagnosis of MGUS or MM and very scared/confused

Hi everyone,

I have been through the ringer and could use some feedback. Sorry in advance for the long story.

7 years ago, I got sick with what seemed like the flu. Both My ears were clogged while I was sick. I got better and everything cleared up except for the fullness in my left ear only. After so many drs appointments with my pcp and specialists, lots of steroids and antibiotics, things only got worse. I eventually asked an ENT to put a tube in my ear before I took a long airline flight. After the tube, I started leaking fluid out of my ear and it was finally realized that I was leaking cerebral spinal fluid. I had brain surgery and things seemed to be ok.

On January 1 2024, I woke up sick again. Then I started getting hives all over my body. I got antibiotics and steroids and the hives wouldn’t go away. They would come and go in different locations but usually my hands, face, arms, stomach, chest and legs. After several visits with my PCP he referred me to Rheumatology for potential lupus. Lots of tests and no lupus or any other autoimmune disorder. I was then referred to dermatology. More tests and a biopsy. High dose steroids and high dose antihistamines. No allergies. Blood work came back showing elevated IgA with an M spike. I was then referred to hematology/oncology. Blood work showed really elevated IgA and they recommend a bone marrow biopsy. I was sick with a respiratory infection at the time of the blood draw so I asked to repeat the labs. They were lower but still elevated. They said I could wait and we would repeat the blood work in 3 months. If it’s still elevated I will need to have the bone marrow biopsy.

They are not able to tell me yet if this is Monoclonal gammopathy of unknown significance (MGUS) or MM. I know the bone marrow biopsy would be the best way to get the answer, but I am afraid. I feel like I am continuously sick. Extreme fatigue, body aches but they don’t feel like they are in the bone aside from joint pain in both hands, vertigo and lots of sinus congestion and pressure in my head.

I am being re-checked by neuro to make sure I haven’t started leaking csf again but that would only explain the vertigo and sinus issues. Not the fatigue or body aches and rash.

I’m 44 years old and feeling really discouraged! I am afraid to have the bone marrow biopsy as they said I will be fully awake without an anxiolytic and only numbed at the site. I have heard they are extremely painful.

Is anyone experiencing any similar symptoms and any advice/feedback on the bone marrow biopsy?

Thank you in advance!
Gracie

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Gi @Gracie a great big welcome to our forum which I hope you do not need.
Your post shows so clearly what complex unique beings we are.
Also with symptoms that might indicate so many conditions or nothing at all.
It seems to me that you are having a lot of fact finding in different specialisms to rule things in or out.
I can imagine your thoughts and feelings are all over the place and often worrying about the negatives.
Also there is always the anxiety of waiting and not knowing.
No wonder you feel discouraged.
So the next step is a bone marrow biopsy. You and read many peoples experiences of them on here from extremely painful to just uncomfortable.
Perhaps this is the next diagnostic test to help you get more information.
I believe in talking to my medical team before and at the time of a procedure and telling them how anxious I am and asking for any help they can give me.
I try and think when I go in for any procedure that I will be out again in say an hour and I can put up with anything to help get an answer.
I also find, and I know this is hard, but trying to relax helps lessen any pain.
Please do let us know how you get on and be very kind to yourself, you have been through a lot.

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Hi @Gracie
Thank you for sharing your story.
It sounds like you have been through a lot and sorry to hear that you are struggling to get a diagnosis at the moment.
We hope that you are able to get some clarification on this soon.

Having a bone marrow biopsy can understandably make people feel anxious and pain can vary from person to person. We would advise speaking to your team about how you are feeling about having a bone marrow biopsy as it’s important to keep them updated on how you are feeling so that they can provide the best care possible for you. They may be able to prescribe a sedative medication for you as well as an addition of local anaesthetic. You may also be allowed to have someone attend with you too.
As Erica has mentioned, perhaps reading the forum to read over other people’s experiences can sometimes be useful too.

Our page Blood cancer tests | Blood Cancer UK also has some further information on bone marrow biopsies.

For information on Monoclonal gammopathy of unknown significance (MGUS) diagnostic tests, our page MGUS diagnosis and monitoring | Blood Cancer UK may be useful.

If you would like to talk things through with us, for further support please call us on 0808 2080 888

Take care,
Emma (Support Services Nurse)

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