Mgus

Hi other people with MGUS...

I just learned this week that I have MGUS, but only after 8 months of tests of all sorts to determine why I have peripheral neuropathy.  At first my fears were the worst, so the diagnosis of MGUS was a bit of a relief.  Nevertheless, knowig that there is a conversion rate of 1% per year to cancer (multiple myeloma) does not help.

I am a runner...or should I say...was a runner until my feet went numb from this MGUS.  I have done a lot of research and found that people with IgM - MGUS are more likely to have peripheral neuropathy than those with IgG.  Because of the numbness and loss of balance, etc, the doctors have prescribed medication called RITUXAN, which just happens to be very expensive.  But the main thing is to try to stop the progression of the numbness which has now climbed to just below my knees.  It is accompanied by weakness so I have difficulty walking at the same pace as others.  All of this is very depressing after running many marathons and trying to stay healthy for the last 30 years.

I was wondering if there are others in this chat group who have either the IgM type MGUS or who have peripheral neuropathy?

Like many of you posted, I had never heard of MGUS until this week.  While others say I should be elated that I don't have something like ALS or MM, I am still very concerned about the possibility of it changing to cancer.

Good luck everyone. 

 

On 9/5/2007 Andrew59 wrote:

Hi other people with MGUS...

I just learned this week that I have MGUS, but only after 8 months of tests of all sorts to determine why I have peripheral neuropathy.  At first my fears were the worst, so the diagnosis of MGUS was a bit of a relief.  Nevertheless, knowig that there is a conversion rate of 1% per year to cancer (multiple myeloma) does not help.

I am a runner...or should I say...was a runner until my feet went numb from this MGUS.  I have done a lot of research and found that people with IgM - MGUS are more likely to have peripheral neuropathy than those with IgG.  Because of the numbness and loss of balance, etc, the doctors have prescribed medication called RITUXAN, which just happens to be very expensive.  But the main thing is to try to stop the progression of the numbness which has now climbed to just below my knees.  It is accompanied by weakness so I have difficulty walking at the same pace as others.  All of this is very depressing after running many marathons and trying to stay healthy for the last 30 years.

I was wondering if there are others in this chat group who have either the IgM type MGUS or who have peripheral neuropathy?

Like many of you posted, I had never heard of MGUS until this week.  While others say I should be elated that I don't have something like ALS or MM, I am still very concerned about the possibility of it changing to cancer.

Good luck everyone. 

Hi My Husband has MGUS and Periphial Neuropathy. We were not sure at first what caused the Neoropathy . He has not been prescribed any medication so would be interested to learn if the medication you are on has slowed things down. Like you my husbnd has trouble with his balance and walking. Over the last few months it seems to be worse.

My husband has had bone marrow biospy and that was ok. but he has got several lytic lesions in his skull which are monitored through scans.

please feel free to ask any questions about this. I have done lots of research but it is not known how you get this M protein. My husband did have chemotherapy back in 1992 as he was diagnosed with Non Hodkins Lymphoma. and since then with Castlemans Disease which is very rare and little is known about it. especailly in England we we live.

hope you keep ok

 

 

On 9/5/2007 Andrew59 wrote:

Hi other people with MGUS...

I just learned this week that I have MGUS, but only after 8 months of tests of all sorts to determine why I have peripheral neuropathy.  At first my fears were the worst, so the diagnosis of MGUS was a bit of a relief.  Nevertheless, knowig that there is a conversion rate of 1% per year to cancer (multiple myeloma) does not help.

I am a runner...or should I say...was a runner until my feet went numb from this MGUS.  I have done a lot of research and found that people with IgM - MGUS are more likely to have peripheral neuropathy than those with IgG.  Because of the numbness and loss of balance, etc, the doctors have prescribed medication called RITUXAN, which just happens to be very expensive.  But the main thing is to try to stop the progression of the numbness which has now climbed to just below my knees.  It is accompanied by weakness so I have difficulty walking at the same pace as others.  All of this is very depressing after running many marathons and trying to stay healthy for the last 30 years.

I was wondering if there are others in this chat group who have either the IgM type MGUS or who have peripheral neuropathy?

Like many of you posted, I had never heard of MGUS until this week.  While others say I should be elated that I don't have something like ALS or MM, I am still very concerned about the possibility of it changing to cancer.

Good luck everyone. 

 

I was recently diagnosed with MGUS (IgM) and peripheral neuropathy as well. It started off with some pain and heaviness in my feet and legs when running and then some stinging sensations later on that eventually went up into my hands. I even have some burning sensation on the back of my neck and into my hair.

I have given up running but can still play carry a set of clubs around the golf course (painful but I can manage this so far.) The biggest concern for me is that it might end up evolving into Waldenstrom's, AL or a lymphoma and I have a tendency to not look on the bright side of things, pretty much a worrier at the core. I am followed by my internist, a hemotologist and neurologist. I go in for more lab work in November.

Regards, Chuck

Hi there,

 I am 48 years  old and  have  MGUS and  peripheral neuropaphy.

I also have a  condition  called Fibromyalgia,  and  was  told after  my  initial blood  tests that I had a  rare form of Non Hodgkins Lymphoma -  which is  idolent so  at  present  needs no treatment., all these  conditions can  cause the neuropaphy !

I am  on a  drug called neurotin, which diabetics also use to combat  this  condition.  I do  find that it  helps, and  I am  also on musle  relaxants and pain killers., as  between the  neuropathy and the fibromyalgia I  have a  lot  of  pain in  my  muscles  and  specific trigger  points on  my  back, legs, arms, hand and feet., and causes  fatigue.

I keep positive (most  of the  time) and  continue to work full time. I do   find that yoga  is of great  benifit.

You also may  find that a treadmill helps  you,  to keep exercising the  legs, rather than trying to go on  a run.  At  least you can stop  and rest when  you like.  I  use  one and  it  does  help.  I've set  up  a 'gym' at  home so that  I can do as  much or a  little  as  I want, without  looking stupid  if  I go to a proper  gym where everyone  is super fit !

I hope  it  helps to know that you are  not alone, I was  nice to read your  letter as  no one  else  I have  spoken with seems to have this condition.

Thanks and  bye for now

 Maggie

Hello. I didn't realize until now that you had replied to my message. My doctor prescribed Neurontin which does help quite a bit. I haven't had any biopsies or bone marrow aspirations as the level of Igm is quite low so far.

As it turns out, walking is about the best thing I can do and it as other benefits as well like lowering my blood pressure. I am 63 and was taken off antihypertensive meds since my BP seems to be under control now. Nice to hear from you and sorry this took so long!

Regards, Chuck

Hello. I didn't realize until now that you had replied to my message. My doctor prescribed Neurontin which does help quite a bit. I haven't had any biopsies or bone marrow aspirations as the level of Igm is quite low so far.

As it turns out, walking is about the best thing I can do and it as other benefits as well like lowering my blood pressure. I am 63 and was taken off antihypertensive meds since my BP seems to be under control now. Nice to hear from you and sorry this took so long!

Regards, Chuck

I have IgM Mgus. I also have peripheral neuropathy, but not to the extent you do.I was diagnosed serendipitously about 6 years ago. I do not have any weakness or numbness-- i get short burst of pain in my extremeites--- like finger or toe pricks. Cymbalta is a good drug for this--- i weaned off of it, and fortunately my symptoms are tolerable. You may have "antiMAG" antigens on your myelin sheaths--- the igM binds to it and causes the neuropathy. Rituxan indeed is the drug of choice as far as I know, and there are also studies being done with other drugs. The success rate has varies according to my reading. what rituxan does is knkill of certain B cells that make the IgM. IgM practically never eveolves into multiple Myeloma, but rather into lymphoma, poem's syndrome or Waldenstrom's Macroglobulinemia--- all much better to have than MM as they are chronic conditions that people live with sometimes without symptoms. FYI thee is a geat MD at the Mayo clinic in Minnesota named Dr. Stephen Russell. The Mayo also has an ongoing trial w rituxan that it sounds like you may qualify for.

 

On 10/10/2007 MaggieS wrote:

Hi there,

 I am 48 years  old and  have  MGUS and  peripheral neuropaphy.

I also have a  condition  called Fibromyalgia,  and  was  told after  my  initial blood  tests that I had a  rare form of Non Hodgkins Lymphoma -  which is  idolent so  at  present  needs no treatment., all these  conditions can  cause the neuropaphy !

I am  on a  drug called neurotin, which diabetics also use to combat  this  condition.  I do  find that it  helps, and  I am  also on musle  relaxants and pain killers., as  between the  neuropathy and the fibromyalgia I  have a  lot  of  pain in  my  muscles  and  specific trigger  points on  my  back, legs, arms, hand and feet., and causes  fatigue.

I keep positive (most  of the  time) and  continue to work full time. I do   find that yoga  is of great  benifit.

You also may  find that a treadmill helps  you,  to keep exercising the  legs, rather than trying to go on  a run.  At  least you can stop  and rest when  you like.  I  use  one and  it  does  help.  I've set  up  a 'gym' at  home so that  I can do as  much or a  little  as  I want, without  looking stupid  if  I go to a proper  gym where everyone  is super fit !

I hope  it  helps to know that you are  not alone, I was  nice to read your  letter as  no one  else  I have  spoken with seems to have this condition.

Thanks and  bye for now

 Maggie

 

Hi Maggie, Iam pleased to hear that yr NHL is indolent at this time and i hope it stays that way. Im sure with yr positivity, yoga and home gym it will definitely stay that way! 

I just wanted to ask a question. I am a 33 yr old female diagnosed with MGUS (IgG Kappa) about 8 months ago. And i have also just been diagnosed with fibromyalgia. Like you, i keep very active and refuse to let the pain stop me. The question i wanted to ask you is this- a lot of people refer to neuropathy in their messages. Is this a condition that is formally tested for? For years i have had altered sensations in my fingers and toes but it is something that i have just always accepted as being the way i am. I have difficulty for instance drying myself with a towel and cant seem to hold it properly as i cant seem to feel it with the tips/edges of my fingers. And i drop things all the time.I know it never used to feel so different so i know something has changed, but its not a serious thing , so i just let it go. Does this sound like neuropathy? i also have autoimmune thyroid disease and from what ive been reading on the internet, all these antibodies from the thyroid disease and proteins from the MGUS can be the cause of these neuropathies. What to your understanding, causes the neuropathy? Do you get terrible restless legs  as well?

I have just been started on amytryptilline 10mg and am hoping this will help with my fibromyalgia. What do you do apart from exercise for yr fibromyalgia?  missy