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MGUS neuropathy
I was wondering who diagnoses neuropathy? What kind of treatments are available? I am not on any medications. It has progressed to tripping and falling, dropping things, severe muscle pain and weakness.
Re: MGUS neuropathy
As far as I know, it's usually the doctor treating you for your MGUS or myeloma who will help determine if you have neuropathy and how bad it is. I guess, though, that a pain specialists also could come into play if your physician feels that might be better.
I'm fortunate enough not to have had issues with neuropathy so far, so I may not be the best person to ask.
There have been a number of discussions here in the forum about neuropathy, and I think you'll find useful tips and advice in many of them. Here is a link to a list of discussions that may be helpful: http://goo.gl/nYGnR
Best of luck to you,
Cheryl
I'm fortunate enough not to have had issues with neuropathy so far, so I may not be the best person to ask.
There have been a number of discussions here in the forum about neuropathy, and I think you'll find useful tips and advice in many of them. Here is a link to a list of discussions that may be helpful: http://goo.gl/nYGnR
Best of luck to you,
Cheryl
Re: MGUS neuropathy
Thanks. It appears they have not figured me out yet. I am not interested in pain meds. I am finding it harder to stand and walk... Sometimes I can't feel my legs/walking on air! What specialist should I see?
Re: MGUS neuropathy
BB,
Most of the time neuropathy is discussed in this forum it is due to a side effect from drug therapy used to treat multiple myeloma. Neuropathy does not tend to be a part of myeloma disease itself. You also appear to be saying that you have MGUS, which is seldom treated with drugs.
Neuropathy is a nerve problem and if you are having numbness/pain in your limbs/hands/feet, the specialist who treats that is a neurologist.
Most myeloma patients, when it is drug induced, will the causative drug agent discontinued or reduced dosing to minimize any neuropathy that the drug may be causing.
hope this helps.
Most of the time neuropathy is discussed in this forum it is due to a side effect from drug therapy used to treat multiple myeloma. Neuropathy does not tend to be a part of myeloma disease itself. You also appear to be saying that you have MGUS, which is seldom treated with drugs.
Neuropathy is a nerve problem and if you are having numbness/pain in your limbs/hands/feet, the specialist who treats that is a neurologist.
Most myeloma patients, when it is drug induced, will the causative drug agent discontinued or reduced dosing to minimize any neuropathy that the drug may be causing.
hope this helps.
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inquiringminds
Re: MGUS neuropathy
bad blood,
inquiringminds makes a good point. Most myeloma patients experiencing peripheral neuropathy are experiencing because of the medications they are taking.
So your neuropathy is puzzling.
A little known fact is that myeloma itself can cause neuropathy, although I do not think it can be as bad as the neuropathy caused by the medications myeloma patients take. If I recall correctly, the neuropathy from myeloma is related to the excess calcium that many myeloma patients have floating around in their blood. The calcium damages nerve cells, leading to neuropathy.
But if you only have MGUS, without any elevated calcium levels, then this explanation would not seem to explain your situation.
Do you have diabetes or anything else that could be causing the neuropathy?
inquiringminds makes a good point. Most myeloma patients experiencing peripheral neuropathy are experiencing because of the medications they are taking.
So your neuropathy is puzzling.
A little known fact is that myeloma itself can cause neuropathy, although I do not think it can be as bad as the neuropathy caused by the medications myeloma patients take. If I recall correctly, the neuropathy from myeloma is related to the excess calcium that many myeloma patients have floating around in their blood. The calcium damages nerve cells, leading to neuropathy.
But if you only have MGUS, without any elevated calcium levels, then this explanation would not seem to explain your situation.
Do you have diabetes or anything else that could be causing the neuropathy?
Re: MGUS neuropathy
http://www.oncologytube.com/index.php?page=videos§ion=view&vid_id=101953
Take a look at this video. If the link doesn't work, go to oncologytube.com and type MGUS in the search box. I, too have MGUS, and neuropathy. Mine has abated since I began taking curcumin.
[Moderator's note: The video is of a talk about MGUS and neuropathy, presented by Dr. James Berenson.]
Take a look at this video. If the link doesn't work, go to oncologytube.com and type MGUS in the search box. I, too have MGUS, and neuropathy. Mine has abated since I began taking curcumin.
[Moderator's note: The video is of a talk about MGUS and neuropathy, presented by Dr. James Berenson.]
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paulayl
Re: MGUS neuropathy
Dear bad blood,
While there is an entitiy referred to as MGUS neuropathy, your version of it seems to be quite severe from what you are describing. There are other zebras out there that can cause MGUS and more severe neuropathy. One is amyloidosis and the other is POEMS syndrome. I would be sure that you get evaluated for these conditions. Also, MGUS is quite common. As such, the two problems may be unrelated and the neuropathy due to another cause. I think your care would be best handled by a team consisting of a neurologist with expertise in neuropathy and a hematologist-oncologist with expertise in plasma cell disorders (myeloma, MGUS, amyloidosis).
Best of luck!
Pete V.
While there is an entitiy referred to as MGUS neuropathy, your version of it seems to be quite severe from what you are describing. There are other zebras out there that can cause MGUS and more severe neuropathy. One is amyloidosis and the other is POEMS syndrome. I would be sure that you get evaluated for these conditions. Also, MGUS is quite common. As such, the two problems may be unrelated and the neuropathy due to another cause. I think your care would be best handled by a team consisting of a neurologist with expertise in neuropathy and a hematologist-oncologist with expertise in plasma cell disorders (myeloma, MGUS, amyloidosis).
Best of luck!
Pete V.
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Dr. Peter Voorhees - Name: Peter Voorhees, M.D.
Beacon Medical Advisor
Re: MGUS neuropathy
Thanks Doc & others,
How would one be tested for those? They did run a test on my marrow for amyloidosis. It came out neg. Always have abnormal kappa-lambda ratio. Diffuse osteo as well. I am a active person and have had difficulties just keeping up with daily work. I can get out of breath climbing up a flight of stairs. So you recommend me seeing a neurologist? What tests would they conduct and what outcome would I have without any treatments? I would prefer to naturally treat this neuropathy.
How would one be tested for those? They did run a test on my marrow for amyloidosis. It came out neg. Always have abnormal kappa-lambda ratio. Diffuse osteo as well. I am a active person and have had difficulties just keeping up with daily work. I can get out of breath climbing up a flight of stairs. So you recommend me seeing a neurologist? What tests would they conduct and what outcome would I have without any treatments? I would prefer to naturally treat this neuropathy.
Re: MGUS neuropathy
I would go to a neurologist as a first step. They might recommend EMG, nerve conduction studies and additional blood work. If amyloidosis is a concern after further evaluation (a marrow clear of amyloidosis does not necessarily exclude this possibility), a fat pad aspirate is often times done to look for amyloid deposits.
It would be nice to know if there is an underlying treatable cause of the neuropathy. Good luck!
Pete V.
It would be nice to know if there is an underlying treatable cause of the neuropathy. Good luck!
Pete V.
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Dr. Peter Voorhees - Name: Peter Voorhees, M.D.
Beacon Medical Advisor
12 posts
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