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Weak legs and multiple myeloma

by Mona on Wed Apr 03, 2013 6:04 pm

I was diagnosed with stage 4 multiple myeloma in December 2012. I have had an excellent response to Velcade, dex and Revlimid after 3 cycles, all markers look good and I may skip 4th cycle and go to stem cell transplant (SCT).

My question is, has anyone experienced weakness in legs? My right leg has been weak since just after diagnosis. Originally, I could move only my toes and now have regained strength up to my knee. PT has helped, but still never sure what caused the weakness. I have moved from wheelchair to walker to cane, but occasionally, my knee will buckle. I hope to be able to drive again after SCT, but know I need my right leg strong again.

Any suggestions are welcome.
Thanks!

Mona

Re: Weak legs and multiple myeloma

by lys2012 on Wed Apr 03, 2013 6:34 pm

Have you had any nerve involvement from either multiple myeloma or chemo side effects?

Another possibility is you had spinal issues from a fracture or something.

I had a weak leg before diagnosis, my multiple myeloma was causing neuropathy, affecting the nerve. I didn't not fit the mold for an multiple myeloma patient at all, and was being evaluated for over a year for multiple sclerosis due to the type of symptoms multiple myeloma was causing.

I am going to assume you had nerve testing and scans like MRI of your spine? What do your doctors say?

lys2012
Name: Alyssa
When were you/they diagnosed?: 2010, Toronto, Canada
Age at diagnosis: 32

Re: Weak leg and multiple myeloma

by Pelzl on Wed Apr 03, 2013 7:40 pm

Lys,

Could you please tell me more about your conditon and your way to diagnosis? I have neurological problems as well and recently a lymphoroliferative disease is suspected because of IgM deposits and various lab abnormalities.

Thanks.
Sarah

Pelzl

Re: Weak legs and multiple myeloma

by Mona on Thu Apr 04, 2013 12:29 am

Yes, I had MRI, etc and had fractures and lesions pretty much all over spine, back and ribs. They seem to be healing nicely, but leg needs PT, since muscle lost from lack of use.

It is not caused by chemo since a problem before chemo started.

Doctors say it needs physical therapy.

Just curious since I have not read about this issue with anyone else or in literature about multiple myeloma.

Thanks, Mona

Mona

Re: Weak leg and multiple myeloma

by lys2012 on Thu Apr 04, 2013 1:20 pm

Hi Sarah,

I was being followed by a neurologist. He did not really do any fancy testing, just tested my reflexes using the rubber hammer and a sharp object on the bottom of my foot. They were abnormal in the weak leg. I would drag the foot when walking, trip on every sidewalk bump and stuff like that.

I had many other typical myeloma symptoms, but did not know it at the time that everything was related. Only was diagnosed with multiple myeloma when my blood counts dropped and I was fainting and had to go to the ER

ER blood work showed very high protiens, which turned out to be very high M-spike in the IgG lambda type (almost 100 g/L). I'm not sure how it was effecting my nerves, maybe coating it with protein so they did not work right?)

lys2012
Name: Alyssa
When were you/they diagnosed?: 2010, Toronto, Canada
Age at diagnosis: 32

Re: Weak legs and multiple myeloma

by Gilbert on Thu Apr 04, 2013 3:06 pm

Non-secretory person since January 10, 2010. Radiation, chemo (Revlimid), 2 stem cell transplants. All is well except for buzzing legs and tendonopathy in hamstrings causes extreme pain in hip area.

Neurologist hooked me up with Cymbalta and physical therapy. Learned lots about stretching and use of Gaiam Foam Roller. The idea of staying strong and active is key. Lift weights, swim, stretch and stop. When buzzing starts in my legs I move and stretch and its good.

I am fortunate my wife is physical education teacher. She watches me like a hawk

Gilbert

Re: Weak legs and multiple myeloma

by Dr. Adam Cohen on Thu Apr 04, 2013 9:08 pm

Weakness in the legs can often be seen in myeloma patients and can be due to a number of causes.

Myeloma growing in the spine can press on nerves or on the spinal cord itself which can cause weakness or other neurologic abnormalities. Decreased use of the legs (e.g. due to pain from bony lesions or fractures) can gradually lead to muscle loss, as can poor nutritional intake. Finally, certain medications used to treat myeloma, particularly high doses of dexamethasone or prednisone, can cause muscle weakness in some patients (this is called steroid myopathy).

Sounds like you are improving since starting treatment, and continuing the physical therapy and staying active in general are your best bets to keep getting stronger.

Dr. Adam Cohen
Name: Adam D. Cohen, M.D.
Beacon Medical Advisor

Re: Weak legs and multiple myeloma

by Tom B on Wed Apr 10, 2013 1:55 pm

Diagnosed with Stage 3 multiple myeloma in March 2010. Treated with Velcade and dexamethasone, then autologous stem cell transplant in December 2010. Six months later I went to Revlimid 10mg, but had to discontinue periodically because of WBC count.

I have a problem with walking. I tried to walk every day for 30 minutes, but every time I walked I would suffer really bad night cramps in the strangest places ... my inner thighs, my hands, the inside of my forearm, my feet (sometimes cramping up, sometimes cramping down).

I really want to walk, but I don't know if I should. Can I take any mineral supplement?

Tom B

Re: Weak legs and multiple myeloma

by Joe B on Wed Sep 03, 2014 12:57 pm

I was treated for relapsed multiple myeloma. Toward end of treatment cycle I developed back pain. Several weeks after ending the Velcade treatment, I developed weakness in my legs coupled with balance problems. As time went on, walking became more and more of a problem. Use of a cane and walker were needed to avoid falling.

I think that my problems are a side effect of the Velcade treatment. Has anyone out there had similar problems. If so, how long did they last?

I'm currently having in home PT. Doctor tells me I have weakness in ankles and hips.

Joe B

Re: Weak legs and multiple myeloma

by angieevangelou on Wed Sep 03, 2014 1:38 pm

I have had weak legs for several years which has been put down to multiple sclerosis, which I was diagnosed with 3 years ago at the same time as MGUS.

A lot of my symptoms (rib pain back pain weakness in legs fatigue etc) could be MS OR MGUS. How can any doctors tell?

I am now anaemic and waiting to see if iron tablets help or if it is caused by the bone marrow abnormality. I am IgA lambda 6g/l with high (?) FLC lambda 82.6 and lowish FLC ratio.

angieevangelou

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