[Sister In Law]

Severe leg weakness

by Sister In Law on Fri Dec 04, 2015 9:54 pm

Last June, all of a sudden, my husband got bad nerve pain down his arms, legs and some in his torso. His blood pressure plummeted and his digestive tract stopped working. His leg muscles had fasiculations (weird little twitching spasms) and his legs became weak. I could see the muscles begin to wither. He lost 40 lbs fairly quickly and his sense of taste disappeared almost completely. Food tastes terrible. He had nausea and had terrible fatigue.

After running all sorts of tests besides the ones that he asked for, they finally did a bone marrow biopsy (since his sister and father had myeloma). My husband was found to have 30% myeloma in the biopsy and also was told that he has a favorable prognosis due to the FISH test. So basically, he has smoldering myeloma with symptoms, so they are treating him. He has no bone lesions or CRAB.

When they started treatment, they chose Velcade subQ, Cytoxan, and dex. Insurance would not approve Revlimid. We worried about the Velcade because his blood pressure was already very low, and he already had nerve pain from the myeloma! Velcade can also cause abnormal heart rhythm and he had a heart ablation for atrial fibrillation about six years ago and it was successful. After Velcade, his pain got somewhat worse, his blood pressure nose-dived and his heart went into atrial fibrillation and has remained messed up for over three weeks now. He has had to start on Coumadin (warfarin) and is hoping for a conversion soon.

He gets very stressed out and emotional from the dex and the worry that he will not be able to walk pretty soon. His legs are so weak that he is having a terrible time to go up our stairs in the house. His ankles are all swollen (which is totally abnormal for him, but may be because of the atrial fibrillation and the dex).

Here's my question: Are there others on this forum who have experienced this terrible leg weakness and muscle wasting? It started before treatments, so it seems to be related to the disease. The treatment may be making it worse. We are afraid he will need a wheel chair pretty soon and we will have to put a elevator chair in so he can go upstairs to the bathroom and the bedrooms! They tested a blood clot in the marrow for amyloidosis and it was negative, so I hope that is accurate. His sister had amyloidosis with myeloma, but the dad did not.

Please tell us why this happens with the disease. We are scared of disability! His eyes also have bleeds from time to time. The vessels break for no reason. It's just a plethora of misery considering it is a case of smoldering myeloma!

[Multibilly]

Re: Severe leg weakness

by Multibilly on Fri Dec 04, 2015 10:25 pm

Linda,

I think Jim asked some very good questions and made some good observations in the last thread you started. I might suggest addressing the items in his earlier response to you as a means to better understanding the situation.

To build on Jim's comments, did they do a Congo red stain on the bone marrow sample to look for amyloidosis when they ran the bone marrow biopsy? Note that you sometimes a doc need to biopsy the affected organ since you can't always rely on a bone marrow staining test to detect amyloidosis.

Have they run heart function tests to look for amyloidosis?

Have they tested for POEMS syndrome or Waldenstroms's macroglobulinemia (WM)?

Note that muscle wasting is associated with amyloidosis, WM and POEMS.

Which immunoglboulins (IgG, IgG, IgM) and which free light chains (kappa or lambda) are elevated?

Most importantly, is the doctor truly a multiple myeloma specialist? (Again, see Jim's comments)

Last edited by Multibilly on Fri Dec 04, 2015 11:40 pm, edited 1 time in total.

[Sister In Law]

Re: Severe leg weakness

by Sister In Law on Fri Dec 04, 2015 11:34 pm

Hi Multibilly,

I had a really hard time with this site. My husband figured it out. But a lot of times, I can never find my posts again. But I do remember the answers that Jim had written.

My husband is seeing a myeloma specialist (the guy handles mostly myeloma and does stem cell transplants, too). They did a Congo red stain on my husband's bone marrow. I saw the report and it seems that they used a blood clot or something. It said that if he had any symptoms of amyloidosis, they should do a fat pad biopsy. I was angry because they did not just do the fat pad biopsy! But maybe the bone marrow material is sufficient.

The husband had an echo and extensive testing before starting treatment and the cardiologists said that his heart was in good shape and showed no signs of amyloidosis. He had prostate cancer in 2001 and shortly after his surgery he began having episodes of atrial fibrillation. His father had the condition and his grandmother also. It's a family thing, evidently. He had an ablation and had not had any more issues since -- UNTIL this myeloma hit him. It hit him hard all at once, though he had been feeling very bloated for months. His food did not seem to want to digest (I suppose the nerve issues were already affecting his digestive tract).

I do know that they saw myeloma cells and he has an M spike. My sister-in-law, with myeloma and amyloidosis, had no M spike.

So we know he has myeloma cells 30% in his bone marrow. The FISH test said it was a good prognosis. I don't know if the neuropathy in itself can cause the muscles to waste. Maybe that's the issue. But he's having a terrible time with his legs and it doesn't seem that anyone has any answers. I did see that Cytoxan can cause muscle weakness. I believe the dex can also. Not so sure about Velcade, but I think that was also a side effect.

I have never seen him cry so much. He's very depressed. I suppose it is the dex?

I hope that I can now follow this post better since we have figured things out. I have to retype my password every single time. If I try to save it, that's where things go wrong.

Would POEMS or Waldenstroms show myeloma cells in the bone marrow?

[Multibilly]

Re: Severe leg weakness

by Multibilly on Fri Dec 04, 2015 11:57 pm

You can't always rule out amyloidosis by only conducting a bone marrow biopsy (BMB) stain test. Amyloidosis doesn't always show up in a BMB test even though the patient may be suffering from it.

Amyloidosis can occur alongside multiple myeloma and there are several folks on this forum who have both diseases.

All of these diseases result in having monoclonal plasma cells, but POEMS and WM each have some additional and unique telltale signs that show up in a bone marrow biopsy test. But I believe one needs to be looking for these specific signs.

Which immunoglboulins (IgG, IgG, IgM) and which free light chains (kappa or lambda) are elevated?

If you let us know what city the patient is in, folks on this site can make some recommendations as to where to get a second opinion from a top myeloma specialist.

[Sister In Law]

Re: Severe leg weakness

by Sister In Law on Sat Dec 05, 2015 12:08 am

One more thing ... my husband started out with a very rude doctor who didn't care about his neuropathy. He kept blaming my husband's diabetes (which he does not have). He was just awful. This man did not want to help him with pain management and he didn't seem to care about the neuropathy. He was going to prescribe Velcade twice a week. The insurance company denied Revlimid (but I totally believe they would have allowed it if this doctor would have cared enough to explain that Velcade would not be a good choice due to neuropathy). I asked him to take over the pain management for my husband and he rattled on and on about how he would have to fill out endless paperwork, etc. He was that lazy and uncaring. So I know that he would not have bothered to request Revlimid due to circumstances.

After two appointments, we changed doctors. When I asked him about testing for amyloidosis, he told me I needed counseling. Unbelievable. So we have a very nice doctor now, and a myeloma specialist. He is compassionate and has now discontinued Velcade. HE will write to the insurance company and get Revlimid approved. It was more work than the first doctor wanted.

I will have to dig out my husband's numbers tomorrow and post them.

I hope he will have an easier time with Revlimid.

[Sister In Law]

Re: Severe leg weakness

by Sister In Law on Sat Dec 05, 2015 12:23 am

Hi Multibilly,

I see you responded while I was blabbing in the last post!!

They did do the Congo red stain on the bone marrow test. And it was negative.

My sister-in-law had both diseases. She really had a severe case with aggressive disease.

IgG is 441 (low)
IgA is 35 (low)
IgM is 6 (low)

Kappa is low -- 0.03
Lambda is high -- 79.40
Ratio : Unable to calculate ratio due to undetectable concentrations of free kappa and or free lambda light chains.

From the SPE:
The monoclonal protein in the beta2 region cannot be accurately quantitated because it co migrates with other proteins in the region. Hypogammaglobulinemia (immune deficiency or suppression, renal or GI protein loss, plasma cell abnormality/dyscrasia, gammopathy, light chain disease).

I have the report from the bone marrow biopsy somewhere. I will have to look for it yet tomorrow. I don't know if any of this helps.

I know he has lambda light chain myeloma.

[Sister In Law]

Re: Severe leg weakness

by Sister In Law on Sat Dec 05, 2015 1:35 am

Hubby had leg weakness all along, but I did see that Cytoxan can cause muscle weakness. He's had four treatments in a row, so maybe that's making it worse.

I looked up more on POEMs. he doesn't have any skin abnormalities and no known organ issues, other than fatty liver. He has had thyroid dysfunction and prostate cancer.

I will ask his doctor.

[Multibilly]

Re: Severe leg weakness

by Multibilly on Sat Dec 05, 2015 8:11 am

Yes, the multiple myeloma treatment itself can cause muscle wasting and I should have mentioned that earlier.

There are other drug triplets that don't involve Cytoxan (or Revlimid since the patient's insurance may not cover it...although they might reconsider covering Revlimid if the current regimen is failing and the doctor contacts the insurance company directly...as you mentioned). The choices will be largely dictated by whether the patient is considering a transplant or not.

Note that the combo of a low kappa, high lambda and a low kappa/lambda ratio suggests bone marrow suppression.

In any case, folks on this forum aren't qualified to re-diagnose this case and only a multiple myeloma specialist should be doing so.

I would therefore strongly suggest getting a second opinion from a top multiple myeloma specialist. The credentials you spelled out earlier for the doctor don't necessarily mean that he is a multiple myeloma specialist. If you let us know what city the patient is in, folks can make some recommendations of which institutions and doctors to seek out. I think it's always a good idea to get a second opinion, especially under these circumstances where you think the patient might soon become disabled.

[hykergirl]

Re: Severe leg weakness

by hykergirl on Sun Dec 06, 2015 6:37 pm

Hi Linda,

I have also had some similar neurological symptoms. Muscle fasciculation/rippling, pain, weakness, cramping to the point of bruising, loss of balance, bowel issues, sweating, heart palpitations and even some cognitive concerns centered around location. When I was first diagnosed it was assumed this was all related to the myeloma. Post treatment which included stem cell transplant and further consolidation the symptoms began to return although my myeloma numbers remained low. My myeloma specialist at this point did not feel it was due to the myeloma since the numbers were stable and low and suggested we investigate further with rheumatology/neurology.

Neurology ran a Paraneoplastic Auto Antibody Serum Panel and it was found that I have an elevated Vaulted Gated Potassium Antibody an antibody that effects the nervous system giving me a diagnosis of Morvan's Syndrome. I have recently started treatment with high dose IVIG therapy and wow what a difference!! I feel like I have part of my life back again.

Certain cancers are more likely to produce this antibody than others and it is more frequently seen with small cell lung cancer and thyomas. After finding the elevated antibody they did a CT and MRI and did discover I have an enlarged thymus. Interestingly there was always questions regarding my diagnosis of having active myeloma due to my myeloma numbers being quite low for the level of anemia I was experiencing. I was transfusion dependent not really making any red blood cells. My bone marrow was consistent with Pure Red Blood Cell Aplasia which is seen frequently with thyoma. If not for the anemia I would not have had active myeloma. Interesting.

For the myeloma I can not stress enough the importance of seeing a myeloma specialist. If how ever you believe something else is at play I would also recommend being see at a large diagnostic center such as the Mayo Clinic in Rochester MN.

Best of Luck -

[Sister In Law]

Re: Severe leg weakness

by Sister In Law on Wed Dec 09, 2015 1:02 pm

Hi HykerGirl
That is super interesting. So far, there doesn't seem to be any sort of explanation for his leg weakness. One leg is weaker than the other. It's really odd, but it happened at the same time as when his myeloma became apparent. He had the fassiculations, also. He does not have those anymore, but his legs are thin (having lost muscle mass) and weak. He has also had trouble with atrial fib and seems unsteady on his feet sometimes. The feeling is returning to his feet since he has had four treatments and the nerve pain is now gone for the most part. All that is good news, but the leg weakness is very upsetting to him. He is going to cut and paste your reply and then take it to his doctor.

He has thought maybe it was the Cytoxan or Velcade that has made him so much weaker in the legs. I don't know if anyone out there has any input or ideas about the two drugs causing leg weakness. He had the weakness from the myeloma, but it got worse with treatment. It's a struggle to walk at times. He still goes to work, but it is a real effort.

Thanks for writing! It's an idea for us!