Quantcast

Living with Polyneuropathy CIDP, GBS, & CMT

MGUS in addition to CIDP?


#1

Hi There:

Has anyone else here been diagnosed with MGUS (monoclonogammopathy of uncertain significance)? When my neuro did the million dollar workup for CIDP, he found that my IgM levels were elevated and in the 8-9 range which is above normal. I follow up with an oncologist but wonder how much of my symptoms are related to CIDP and how much to MGUS? Apparently a lot of the symptoms are the same. I had a negative bone marrow biopsy last April. My MGUS levels have stayed in the same range, so my doc says he's waiting to see if there is a trend upward or if it will stay the same?

This is all so overwhelming. How am I supposed to keep my full-time job when I'm seeing docs, getting treatments, side effects, etc. I now officially have 5 specialists but neither knows what the other is doing!

Thanks for listening.

Lisa in Mich


#2

I too went through five specialist before my CIDP diagnosis, six if I was to count my neurologist for epilepsy who noticed something was wrong, but didn't know what. With the epilepsy I was able to keep my job for over 20 years, but the CIDP was when I knew it was time to retire. Now I spend what time I have repairing computers and computer OS. Sometimes you just have to say:"Oh, well" Gary

PS: It keeps me out of trouble.


#3

I have not heard of this until now. Will have to look it up. I will keep you in my thoughts.Take one day at a time- you can only do your best, whatever that is at the moment! Sending you my best!


#4

Yes Lisa, I too have been diagnosed both with CIDP and MGUS. I had to see an oncologist who ran a number of tests including a bone marrow biopsy, spinal tap, complete bone scan and multiple blood tests. My tests came back abnormal but not abnormally so. How's that for an answer. That's what they said, they need to keep an eye on it and watch for changes.

If you receive IVIG treatments it will obscure the MGUS results so they may only want to do the immunofixation tests just prior to an IVIG treatment. So far it the only effect seems to be that typical CIDP treatment does not seem to work as well on me as it seems to work on others. Currently I receive IVIG infusions every week and take Cellcept every day along with a number of other medications. I have been unable to work for over 2 years now and after the original treatment of Steroids I am now Diabetic. All three problems have similar symptoms when dealing with the neuropothy. MGUS, as the name implies, is unclear or uncertain as to what effect the monoclonal protein has other than being a precursor to certain types of cancer.

I wish I had better news for you, but as you can see, or as you will find out, we are still learning about this disease. Good luck and keep us posted.

Dave


#5

Hi Lisa - tough times - navigating the unknown.

I have a friend who is my 'patient advocate' - clear thinking - she hears what I miss, helps me work through all the data coming my way from different sources. A wonderful gift.

And I have come to the place 'when all is said and done' - with my 'patient advocate helps' - i hold my power and make my decision for me. It took me two years to come to this place - I believed "they knew" the answers and I had to follow .... which I did willingly - believing 'they would find a cure for me ' - or at least a place when I could 'live my life'.

One of my local doctors said - 'there is so much about medicine we don't know - BUT we know more today than we did yesterday" - so don't give up.

Every three months I re-access what Im doing, what doctors Im seeing ... what treatments/ medication etc .. and I edit to make sure Im not doing tooo much or seeking toooo many opinions. I was offered 6 appointments with a psychologist - which was most helpful with my 'adjustment thinking". Hope this helps you in some small way.

Stay strong - sending you calm, gentle thoughts. Janie


#6

Hi sweetheart..im sorry to hear of the problems your going thru.We all can relate..i havent heard of this so im learning and i do appreciate You sharing with us. They found mine to be a IgA defiency.Wish i could help you more or give some advice but i was just recently diagnosed in Aug. with cidp and i also have another rare disease called hypercholestrolanemia as well. It can get overwhealming i know but stay strong and know we are here for you!

Big hugs and lots of prayers..Amy


#7

Lisa -

I have CIDP and MGUS (mono clonal lymphocytosis type b) and my neurologist and hematologist have told me that the two conditions may or may not be related. Interestingly, I live in Michigan and am trying to balance treatment,work and the rest of my life, too.

Would love to learn more about the relationship (if any) between the two.

John


#8

Thanks Amy:

I am IgA deficient also. Thanks for the support.

Hugs,

Lisa in Mich



Amy said:

Hi sweetheart..im sorry to hear of the problems your going thru.We all can relate..i havent heard of this so im learning and i do appreciate You sharing with us. They found mine to be a IgA defiency.Wish i could help you more or give some advice but i was just recently diagnosed in Aug. with cidp and i also have another rare disease called hypercholestrolanemia as well. It can get overwhealming i know but stay strong and know we are here for you!

Big hugs and lots of prayers..Amy


#9

Hi John:

It's quite a roller coaster ride we are on isn't it? I was diagnosed with CIDP and MGUS a year ago. I've had more tests, blood draws, treatments, etc. enough to make this disease a full-time job!!

Where in Michigan are you? I am in Northville/Novi area and see my doctors out of St. Joseph Mercy Health System since I work for them and they are in network. I am however, trying to get in to see a specialist at U of M, Dr. Teener because my current neuro will not treat me with IVig anymore because I got a superficial blood clot in my arm at the IV site. I NEED the IVig so I can function, so I am getting another opinion.

Regarding the MGUS (high IgM proteins), my hemo/onc doc is just following it in case it starts trending upwards. Right now my level is elevated at an 8 (normal is 2-4) but he says the last few blood tests it has remained the same so I see him again in 3 months.

Hope you are getting the right help you need. This really is a tricky disease and hard for others (including health care professionals) to wrap their minds around. I feel like a guinea pig at times!

Hugs,

Lisa in Mich

jziraldo said:

Lisa -

I have CIDP and MGUS (mono clonal lymphocytosis type b) and my neurologist and hematologist have told me that the two conditions may or may not be related. Interestingly, I live in Michigan and am trying to balance treatment,work and the rest of my life, too.

Would love to learn more about the relationship (if any) between the two.

John


#10

Thanks Janie: You are so right. It takes a while to get all the bugs sorted out but challenging because I'm not a patience is NOT one of my virtues. I kinda thought that once they made the diagnosis and I started treatment, it would be a slam dunk...NOT!!

And so I keep marching along as best I can until something doesn't feel right and so I keep asking questions here and from other CIDP patients to see what works for others and what doesn't work.

Right now I'm currently on short term disability and may or may not have a job when I return to work in April. It scares the heck out of me!

Hugs,

Lisa in Mich

Janie said:

Hi Lisa - tough times - navigating the unknown.

I have a friend who is my 'patient advocate' - clear thinking - she hears what I miss, helps me work through all the data coming my way from different sources. A wonderful gift.

And I have come to the place 'when all is said and done' - with my 'patient advocate helps' - i hold my power and make my decision for me. It took me two years to come to this place - I believed "they knew" the answers and I had to follow .... which I did willingly - believing 'they would find a cure for me ' - or at least a place when I could 'live my life'.

One of my local doctors said - 'there is so much about medicine we don't know - BUT we know more today than we did yesterday" - so don't give up.

Every three months I re-access what Im doing, what doctors Im seeing ... what treatments/ medication etc .. and I edit to make sure Im not doing tooo much or seeking toooo many opinions. I was offered 6 appointments with a psychologist - which was most helpful with my 'adjustment thinking". Hope this helps you in some small way.

Stay strong - sending you calm, gentle thoughts. Janie


#11

Hi Dave:

My story sounds much like yours. Just following doctor's orders... I've had all the same tests as you. I feel like a guinea pig. And like you, the steroids have caused me to gain 40+ pounds and thrown my blood sugars and cholesterol into overdrive. UGH!

I just want to feel good and have some peace. Serenity now. Serenity now.

Hugs,

Lisa in Mich

Spelcheker said:

Yes Lisa, I too have been diagnosed both with CIDP and MGUS. I had to see an oncologist who ran a number of tests including a bone marrow biopsy, spinal tap, complete bone scan and multiple blood tests. My tests came back abnormal but not abnormally so. How's that for an answer. That's what they said, they need to keep an eye on it and watch for changes.

If you receive IVIG treatments it will obscure the MGUS results so they may only want to do the immunofixation tests just prior to an IVIG treatment. So far it the only effect seems to be that typical CIDP treatment does not seem to work as well on me as it seems to work on others. Currently I receive IVIG infusions every week and take Cellcept every day along with a number of other medications. I have been unable to work for over 2 years now and after the original treatment of Steroids I am now Diabetic. All three problems have similar symptoms when dealing with the neuropothy. MGUS, as the name implies, is unclear or uncertain as to what effect the monoclonal protein has other than being a precursor to certain types of cancer.

I wish I had better news for you, but as you can see, or as you will find out, we are still learning about this disease. Good luck and keep us posted.

Dave


#12

Hi Lisa, I’m new here, and just found this thread while searching. I was diagnosed with CIDP MGUS in August. I was told by the hematologist that my IgM was .49 above normal. I’ve been so overwhelmed by it all that I didn’t even ask what “normal” was! He didn’t find it necessary to do a bone marrow biopsy, but did do numerous tests for lymphoma, which were all negative. He did test for anti-MAG antibodies, but as of today, I don’t know the results. Or maybe I do…the hematologist said that all of my blood study test results were in, and the only thing that showed up was the slight IgM protein “aberration”. I’m guessing this includes the anti-MAG testing also. He left it up to my neurologist to decide which line of treatment to use.

He decided to start with plasmapheresis to try to remove the IgM antibodies. I had my first 3 treatments in the hospital, where they also installed a central line tunneled vena-catheter port in my chest (under anesthesia, thank goodness!!) I had one more in the outpatient clinic, and then 2 more a couple of weeks later on 9/12 and 9/13. I immediately noticed sensory differences! I can feel textures instead of everything feeling like hot sandpaper, like the texture of my skin and hair. I no longer had the feeling of gauze around my lower legs and feet, etc. I have been having Home Health Care Physical Therapy, and that has made me feel stronger, though I’m still having to use a walker because of my balance issues! In other words, I’ve seen some positive results from plasmapheresis…no miraculous cure, but at least something moving forward and not behind!

Well, my insurance company, Blue Cross Blue Shield, has decided they’re not going to pay for my plasmapheresis treatments because they are not covered under the terms of my contract!! WHAT?? Right now they are only looking at the 3 I received at the outpatient clinic…nothing has been mentioned YET about the 3 I received in the hospital. I’m hoping it is only a coding issue! The person I spoke to at BCBS sent the 3 claims back to a medical review board to see why the treatments were not covered. I am looking at a bill of over $18,000, and now I will have to put my treatments for October on hold until this is resolved. No fun!

Have any of you had this problem? Besides being overwhelmed with my diagnosis and symptoms, now I have to be overwhelmed with my insurance company!?!? Do you think it could be the MGUS part of my diagnosis? I really don’t know what to think at this point!

Thanks for letting me vent about all of this! I hope you are all doing well, and are having a weekend of less pain!

Paula


#13

Dave,
Can you tell me where you found the info about IVIG obscuring the test results for MGUS. I have been taking IVIG for a year and a half and have not shown an M spike.

Steve