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Questions and discussion about monoclonal gammopathy of undetermined significance (i.e., diagnosis, risk of progression, living with the disease, etc.)

Sudden deterioration in my health

by MrsM on Sat Mar 05, 2016 6:42 pm

Hello Everybody,

It's been several months since I last posted. Unfortunately I'm still on the waiting list to see the myeloma specialist. The good news is I'm still seeing the hematologist who diagnosed me with MGUS and i was told things look stable, but I'm suddenly not well anymore. It started back in November. I came down with shingles on my back, then I caught a bad virus, then I suddenly began to see floater in front of my eyes. Then I started to have sudden pain in the back of my knee on my fibula? And just general aches and pains all over my body. It's gotten so bad I'm limping now and I can barely bend my knee.

My general practitioner ran some tests and determined I was slightly iron deficient again and I'm vitamin D deficient. There is on reason why I'm anemic again. I no longer have a period because i have a Mirena . GP then sent me to get an xray on my knees and I was diagnosed with osteo­arthritis and I'm only 38 years old.

I'm very concerned I'm progressing, but I was told I couldn't be because there is only a 1% chance per year. I have an abnormal free light chain ratio of 2.33. I know its not too out of range, but not normal either.

I'm just getting frustrated because I'm constantly being dismissed when I complain about how I'm feeling. :(

MrsM
Name: Mrs M
Who do you know with myeloma?: I have MGUS
When were you/they diagnosed?: May 2015
Age at diagnosis: 39

Re: Sudden deterioration in my health

by Multibilly on Sat Mar 05, 2016 7:42 pm

Hi MrsM,

I'm glad to hear from you again, but I'm sorry it is under these circumstances

Might I suggest you contact the office of the specialist you are waiting on and explain that your health has taken a serious turn for the worse and if there is any way that they can move up your appointment into the next week or two? Also, if your schedule is flexible, you might offer to take the first cancellation that comes up.

When it comes to cancer clinics, I find that the schedulers at these clinics (and all the staff for that matter) tend to be pretty responsive to the special requests of a patient.

Multibilly
Name: Multibilly
Who do you know with myeloma?: Me
When were you/they diagnosed?: Smoldering, Nov, 2012


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