[deb51216]

Ankle pain - related to multiple myeloma?

by deb51216 on Sun May 22, 2016 10:39 pm

I was diagnosed with multiple myeloma ten days ago. What brought me to my doctor was severe ankle pain that makes it very difficult to walk. The pain is in the outer bone area of both ankles. It started in June 2015, in my left ankle and as a mild pain. It gradually got worse over time, and in March 2016 my doctor referred me to a rheumatologist. We thought maybe RA (sister is newly diagnosed), lupus, or something else.

On April 15, 2016 I had an appointment with the rheumatologist. He ran the bloodwork and suspected amyloidosis. I was sent to a hematologist at Dana Farber and had bloodwork. Then I had a bone marrow biopsy on May 5, 2016 and on May 12, 2016 was given a diagnosis of multiple myeloma.

The doctors are unsure if my ankle pain is related to multiple myeloma. When walking, I often feel my ankle is going to snap. I am in pain 24/7. Resting doesn't help. The pain is so severe I have been out of work since April 26, 2016. I work with preschoolers with severe special needs, so I need to be able to walk and run.

I am wondering what others think about my ankle pain. Could it be related?

Being newly diagnosed, I find this board to be very helpful.

[JPC]

Re: Ankle pain - related to multiple myeloma?

by JPC on Mon May 23, 2016 6:50 am

Hello Deb:

I am sorry you have occasion to be here, but welcome to the forum. Bone pain is one of the most common issues with newly diagnosed multiple myeloma. It could be anywhere on the body, but is most frequently in the spine. So it's highly possible that the ankle pain is related to the multiple myeloma, however, it is also possible that its unrelated. A bone scan, which I am sure they will do, would shed some light on the issue. Good luck to you.

[Multibilly]

Re: Ankle pain - related to multiple myeloma?

by Multibilly on Mon May 23, 2016 8:38 am

I would suggest going to see a top podiatrist. I have had several feet issues over the years, and my podiatrist has been an absolute godsend in keeping me active and hiking.

When I asked my podiatrist about multiple myeloma and my feet, he indicated that I wouldn't have any multiple myeloma issues show up directly in my feet (other than peripheral neuropathy). The only way the disease would manifest itself in my feet is if multiple myeloma-related issues elsewhere in my legs or spine were to throw off my gait. I suppose there might be rare cases to the contrary, but I would look to more common foot problems first.

[Tracy J]

Re: Ankle pain - related to multiple myeloma?

by Tracy J on Mon May 23, 2016 12:50 pm

A patient can have multiple myeloma with or without amyloidosis (and vice versa). To find out whether or not amyloidosis is present in addition to multiple myeloma, the biopsy samples must be subjected to specific tests in the lab - Congo red stain. When present, the amyloid fibrils can certainly collect in the joint spaces and cause joint pain. In fact, when I think back to the time when I was perfectly healthy, the VERY first symptom I noticed from amyloidosis was hip pain. It was certainly affecting other organs at that time, but I didn't notice that until a little later.

Amyloidosis ONLY affecting the joints is sort of unusual, but amyloidosis behaves in strange ways. Usually amyloidosis measurably affects the kidney and heart first. Do you know if your biopsy samples were tested specifically for amyloidosis?