[Dano]

Neuropathy and muscle weakness

by Dano on Fri Dec 19, 2014 10:16 pm

This is long. Thanks for taking the time to read it.

I was diagnosed with IgG kappa multiple myeloma in January 2014, and my only CRAB feature was minor lesions in my spine seen on PET scan. I started in March with 25 mg Revlimid daily X 21 days, dex 40 mg weekly, and Zometa 4 mg monthly. In May, my doctor added Velcade to the Revlimid and dex. I stayed on the RVD until the end of September when I began to prepare for stem cell collection and ASCT. I had my ASCT on October 20th and have not been on any chemo since. I came thru transplant without nausea, diarrhea, or mouth sores, and I grafted on day 7. My numbers advanced so well I was discharged a week early.

Around the end of August – about two months prior to my transplant – I began to develop what I and my family doctor thought was sciatica pain (on and off) in my right leg. A lumbar MRI in September showed two bulging discs, and I planned to address the problem post transplant. At the same time, I began to develop neuropathy on the ball of my right foot.

As I approached transplant, the sciatic pain and neuropathy worsened and, by the end of October, I could not walk without the aide of a walker. My nerve pain worsened, I lost muscle strength in my right leg, and I could no longer support my body weight on my right leg. My left leg and foot are also numb and weak, but I still have about 70% use.

About a month ago, I developed neuropathy in my left little finger and the palm of my hand just behind that finger. My legs / feet have not worsened in the past few weeks.

I am seeing a neurologist and I have had the following tests: MRI of my brain, cervical and thoracic spine, and lumbar puncture. All tests are normal. The MRI for September shows slight disc bulging but no nerve impingement. My neurologist has ruled out ALS and MS, and told me he does not know what is causing my problem. With the approval of my multiple myeloma specialist, we decided to try IVIG therapy. If there is no response, my neurologist will refer me to doctors in Tampa or Miami.

The nerve / neuropathy pain is constant and usually worse at the end of the day. I'm on 1500 mg of gabapentin (Neurontin) daily in addition to pain medication, but with little or no relief.

I am unable to drive, I have lost my independence, and I will probably lose my job. This all came about over a few weeks. Prior to transplant I was active, enjoying life, and working full time. I'm looking for answers and a solution, and hopefully someone in the Beacon community can help.

[Miraskye23]

Re: Neuropathy and muscle weakness

by Miraskye23 on Sat Dec 20, 2014 12:10 am

My father was diagnosed in September with MGUS by blood work. His bone scan showed 1 small lesion on his arm. Since September he has had neuropathy that has progressed very fast. It started as tingling in his hands and feet and now he has a hard time walking and cannot stand up for longer than a few minutes. His hands and feet are turning purple. He is extremely fatigued and weak.

He had a bone marrow biopsy today and will find out the results soon. His hematologist said he thinks he has amyloidosis, where amyloid has deposited through his nerves causing the neuropathy. I am hoping it has not spread to his other organs, but on his 24-hour urine his protein was slightly elevated!

[mikeb]

Re: Neuropathy and muscle weakness

by mikeb on Sat Dec 20, 2014 1:29 pm

Hi Dano,

I'm very sorry to hear about your neuropathy and muscle weakness problems.

Both Velcade and melphalan, which you received as part of your stem cell transplant, can cause peripheral neuropathy. I'm no doctor, so I can't tell whether there is a connection between those drugs and what you are experiencing. But it is worth discussing with your medical team.

What you're experiencing does sound worse than "normal" peripheral neuropathy caused by these treatments, though. For what it's worth, I've been taking Lyrica (pregabalin), L-carnitine and alpha lipoic acid to deal with peripheral neuropathy.

Good luck!
Mike

[Dr. Adam Cohen]

Re: Neuropathy and muscle weakness

by Dr. Adam Cohen on Sun Dec 21, 2014 5:41 pm

Velcade commonly causes peripheral neuropathy, and while it is usually not as severe as you describe, the timing is highly suspicious since this occurred and worsened while on Velcade. Melphalan doesn't directly cause neuropathy, but in some patients can exacerbate Velcade-induced neuropathy after stem cell transplant, for unclear reasons.

Given the lack of structural abnormalities on MRI and normal lumbar puncture, I suspect this is Velcade-related. Amyloidosis is another possibility, but would be unusual to develop while you are responding to treatment. An EMG-nerve conduction study test may be helpful to confirm a peripheral neuropathy.

Unfortunately, there are no proven treatments to reverse Velcade-induced neuropathy, though most patients do improve somewhat over time. I do have a couple patients who feel IVIG helps the painful component of their neuropathy, so it's worth trying, though there are no real studies showing a benefit. Drugs like gabapentin, Lyrica (pregabablin) or Cymbalta (duloxetine) may help with the painful component, and if one isn't working, it's worth switching to another to see if there is any benefit. Physical therapy may help with strengthening.

Continued follow-up with your myeloma doc and your neurologist is important, and hopefully over the next few months you may start to see some improvement.

[bad blood]

Re: Neuropathy and muscle weakness

by bad blood on Mon Dec 22, 2014 1:50 pm

I also have been wondering about my neuropathy with my MGUS. Have had MGUS for nine years and neuropathy for a least 2 years. Only one leg, and it's a constant vibrating / buzzing sensation.

I found a new internal medicine doctor to take over any MGUS or regular health issues now. I had a brain MRI last week and it was normal. I was scheduled for EMG on my vibrating leg. I cancelled it because of the normal MRI.

What difference does it make to make a MGUS neuropathy diagnosis? There isn't anything to do about it really. I am just living with it like the rest of my MGUS symptoms. IVIG is over $10,000 a dose and with major side effects. Don't think medication is the answer either.

Can one just live with it for the rest of their lives? Not saying the discomfort and tripping issues are easy.

Hope you find something that helps you. I also have been tested for amyloidosis. Negative.

[Dano]

Re: Neuropathy and muscle weakness

by Dano on Wed Dec 24, 2014 11:21 am

Thank you Dr. Cohen, Miraskye, Mikeb, and bad blood for your reply and suggestions. I start IVIG treatment on Monday. The severity of my neuropathy does suggest something more is going on, and I am determined to hunt down the cause of it. I welcome your suggestions.