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