I had my second liver transplant in 2017, my first was in 2000. Since 2018 I have had painful and numb/tinging feet and went to a Neurologist at my transplant hospital center. They called it SFN. Recently I changed Neurologist and they tested Alpha and Lamda lightcell levels. My Alpha was above normal range but my Lamda was within normal range. Also tested protein M was negitive. I read this is MGUS and an indicator of possible blood cancer because of plasma cell problem.
I am new to this and now worried of getting some sort of blood cancer after 24 years of dealing with organ transplants. I recall a bone marrow test before they diagnosed me with the failing liver in early 2000. But it was negitive. I remember how it hurt taking the biopsy of the marrow through my hip bone.
I had my second liver transplant in 2017, my first was in 2000. Since 2018 I have had painful and numb/tinging feet and went to a Neurologist at my transplant hospital center. They called it SFN. I had a bone scan done in 2018 and told I had Osteoporosis.
Since 2020 I have been getting Prolia shots every 6 months.
Recently I changed Neurologist and they tested Alpha and Lamda lightcell levels. My Alpha was above normal range but my Lamda was within normal range. Also tested protein M was negitive. I read this is MGUS and an indicator of possible blood cancer because of plasma cell problem.
I am new to this and now worried of getting some sort of blood cancer after 24 years of dealing with organ transplants. I recall a bone marrow test before they diagnosed me with the failing liver in early 2000. But it was negitive. I remember how it hurt taking the biopsy of the marrow through my hip bone.
I was diagnosed with MGUS 8 years ago (IgA Kappa light chain) and have had osteoporosis for 5 years (I'm 70). I have minor polyneuropathy, which could be associated with MGUS, or more likely celiac. I had a bone marrow biopsy 8 years ago and actually rather enjoyed it, mainly because it was interesting. I have had 3 Reclast infusions, 5, 3 and 1 years ago followed by several days of flu-like symptoms, then was fine. I preferred infusions to the impact on my liver or other by pills. My osteoporosis has diminished somewhat and is now stable regarding re-ossification of bones. It is important to get bloodwork on B vitamins, D, calcium levels and such, and to exercise, especially resistance training light weights or other that help build muscle and bone. My Kappa and Kappa/Lambda levels are elevated, but not high enough yet for another bone marrow biopsy.
I had my second liver transplant in 2017, my first was in 2000. Since 2018 I have had painful and numb/tinging feet and went to a Neurologist at my transplant hospital center. They called it SFN. Recently I changed Neurologist and they tested Alpha and Lamda lightcell levels. My Alpha was above normal range but my Lamda was within normal range. Also tested protein M was negitive. I read this is MGUS and an indicator of possible blood cancer because of plasma cell problem.
I am new to this and now worried of getting some sort of blood cancer after 24 years of dealing with organ transplants. I recall a bone marrow test before they diagnosed me with the failing liver in early 2000. But it was negitive. I remember how it hurt taking the biopsy of the marrow through my hip bone.
@bobweller
There is so much information on the web that a deep dive is certainly a bit scary. There are lots of variables, however.
The best resource to answer your questions is a hematologist/oncologist.
High light chain levels may or may not indicate a plasma disorder. They will want to explore further.
Although many of us with MGUS experience some neuropathy, many are symptom free. Many have had MGUS for many years and have not progressed to multiple myeloma.
I’m sure that our members with MGUS find your anxiety about a possible MGUS diagnosis totally relatable.
Have you been referred to a blood specialist?
@bobweller
There is so much information on the web that a deep dive is certainly a bit scary. There are lots of variables, however.
The best resource to answer your questions is a hematologist/oncologist.
High light chain levels may or may not indicate a plasma disorder. They will want to explore further.
Although many of us with MGUS experience some neuropathy, many are symptom free. Many have had MGUS for many years and have not progressed to multiple myeloma.
I’m sure that our members with MGUS find your anxiety about a possible MGUS diagnosis totally relatable.
Have you been referred to a blood specialist?
No referral yet. I am following up with Neurology. Next I see my family doc for an annual physical. So I will see what he says in a couple weeks. I understand that I should see a hematologist-oncologist from what I read.
@bobweller
Yes, interestingly, from my experience and from the experience of many members, for some reason, PCP‘s are often reluctant to make that referral as though they should know enough about it to treat it themselves.
When I was diagnosed, I was working in a pediatric hospital. My doctor friends all said, “oh yeah… We read about that in med school.“
Blood disorders are highly complex, it seems. I personally want treatment by someone who has done specialized training and a fellowship in hematology/oncology and not a three month hem/onc rotation. Just think about it as you would reason who is best prepared to do your colonoscopy. You want the gal or guy who does dozens a week, not a handful a year. 😏
@bobweller
Yes, interestingly, from my experience and from the experience of many members, for some reason, PCP‘s are often reluctant to make that referral as though they should know enough about it to treat it themselves.
When I was diagnosed, I was working in a pediatric hospital. My doctor friends all said, “oh yeah… We read about that in med school.“
Blood disorders are highly complex, it seems. I personally want treatment by someone who has done specialized training and a fellowship in hematology/oncology and not a three month hem/onc rotation. Just think about it as you would reason who is best prepared to do your colonoscopy. You want the gal or guy who does dozens a week, not a handful a year. 😏
Oh I understand about the specialist experience. From my transplant experience, I learned to find the best doctor available. I was lucky finding my Heptologist years ago who had the reputation as the doctor's doctor. But, now I am worried
Oh I understand about the specialist experience. From my transplant experience, I learned to find the best doctor available. I was lucky finding my Heptologist years ago who had the reputation as the doctor's doctor. But, now I am worried
There are excellent clinicians out there. See if you can find a support group in your area that can make recommendations if your current doctors cannot or not willing.
I was unable to see my first choice, but asking questions of people in the field was able to find a clinician I respect and appreciate. He’s very patient and answers all of my questions and he doesn’t know he says so, but he finds someone who does. I have some co-existing conditions that complicate my care sometimes. To have a doc who is willing to talk to other specialists is a big bonus.
I hope this goes smoothly for you. Let me know if you would. 🤞🏻
I was diagnosed with MGUS in 2015. Low protein level but has increased .1 each year since. I also have osteoporosis in lower spine (L5 area) and mild neuropathy. I had a PET scan (negative for tumors, etc) but my bone marrow biopsy determined I have MGUS. Lamda/Kappa Light chain ratio is high and Kappa Light Chain level is high. I have also been diligent with VitD/VitK and B12, Calcium, along with other needed supplements for 8 years. I consistently exercise (resistance and cardio) 5xWeek, eat very healthy. No seed oils, preservatives, follow the "clean 15 & dirty dozen" recommendation. I figured if my MGUS progresses in the near to late future, I want my body to be as healthy as possibly both physically and mentally.
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I had my second liver transplant in 2017, my first was in 2000. Since 2018 I have had painful and numb/tinging feet and went to a Neurologist at my transplant hospital center. They called it SFN. Recently I changed Neurologist and they tested Alpha and Lamda lightcell levels. My Alpha was above normal range but my Lamda was within normal range. Also tested protein M was negitive. I read this is MGUS and an indicator of possible blood cancer because of plasma cell problem.
I am new to this and now worried of getting some sort of blood cancer after 24 years of dealing with organ transplants. I recall a bone marrow test before they diagnosed me with the failing liver in early 2000. But it was negitive. I remember how it hurt taking the biopsy of the marrow through my hip bone.
What can I do now? Scared!
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1 ReactionI had my second liver transplant in 2017, my first was in 2000. Since 2018 I have had painful and numb/tinging feet and went to a Neurologist at my transplant hospital center. They called it SFN. I had a bone scan done in 2018 and told I had Osteoporosis.
Since 2020 I have been getting Prolia shots every 6 months.
Recently I changed Neurologist and they tested Alpha and Lamda lightcell levels. My Alpha was above normal range but my Lamda was within normal range. Also tested protein M was negitive. I read this is MGUS and an indicator of possible blood cancer because of plasma cell problem.
I am new to this and now worried of getting some sort of blood cancer after 24 years of dealing with organ transplants. I recall a bone marrow test before they diagnosed me with the failing liver in early 2000. But it was negitive. I remember how it hurt taking the biopsy of the marrow through my hip bone.
What can I do now? Scared!
I was diagnosed with MGUS 8 years ago (IgA Kappa light chain) and have had osteoporosis for 5 years (I'm 70). I have minor polyneuropathy, which could be associated with MGUS, or more likely celiac. I had a bone marrow biopsy 8 years ago and actually rather enjoyed it, mainly because it was interesting. I have had 3 Reclast infusions, 5, 3 and 1 years ago followed by several days of flu-like symptoms, then was fine. I preferred infusions to the impact on my liver or other by pills. My osteoporosis has diminished somewhat and is now stable regarding re-ossification of bones. It is important to get bloodwork on B vitamins, D, calcium levels and such, and to exercise, especially resistance training light weights or other that help build muscle and bone. My Kappa and Kappa/Lambda levels are elevated, but not high enough yet for another bone marrow biopsy.
-
Like -
Helpful -
Hug
3 Reactions@bobweller
There is so much information on the web that a deep dive is certainly a bit scary. There are lots of variables, however.
The best resource to answer your questions is a hematologist/oncologist.
High light chain levels may or may not indicate a plasma disorder. They will want to explore further.
Although many of us with MGUS experience some neuropathy, many are symptom free. Many have had MGUS for many years and have not progressed to multiple myeloma.
I’m sure that our members with MGUS find your anxiety about a possible MGUS diagnosis totally relatable.
Have you been referred to a blood specialist?
-
Like -
Helpful -
Hug
2 ReactionsNo referral yet. I am following up with Neurology. Next I see my family doc for an annual physical. So I will see what he says in a couple weeks. I understand that I should see a hematologist-oncologist from what I read.
-
Like -
Helpful -
Hug
1 Reaction@bobweller
Yes, interestingly, from my experience and from the experience of many members, for some reason, PCP‘s are often reluctant to make that referral as though they should know enough about it to treat it themselves.
When I was diagnosed, I was working in a pediatric hospital. My doctor friends all said, “oh yeah… We read about that in med school.“
Blood disorders are highly complex, it seems. I personally want treatment by someone who has done specialized training and a fellowship in hematology/oncology and not a three month hem/onc rotation. Just think about it as you would reason who is best prepared to do your colonoscopy. You want the gal or guy who does dozens a week, not a handful a year. 😏
-
Like -
Helpful -
Hug
2 ReactionsOh I understand about the specialist experience. From my transplant experience, I learned to find the best doctor available. I was lucky finding my Heptologist years ago who had the reputation as the doctor's doctor. But, now I am worried
-
Like -
Helpful -
Hug
1 ReactionThere are excellent clinicians out there. See if you can find a support group in your area that can make recommendations if your current doctors cannot or not willing.
I was unable to see my first choice, but asking questions of people in the field was able to find a clinician I respect and appreciate. He’s very patient and answers all of my questions and he doesn’t know he says so, but he finds someone who does. I have some co-existing conditions that complicate my care sometimes. To have a doc who is willing to talk to other specialists is a big bonus.
I hope this goes smoothly for you. Let me know if you would. 🤞🏻
-
Like -
Helpful -
Hug
2 ReactionsI would love to hear from anyone who has CLL and if you are on osteomeds? I am conflicted about starting one due to lack of studies.
Thank you xo
I was diagnosed with MGUS in 2015. Low protein level but has increased .1 each year since. I also have osteoporosis in lower spine (L5 area) and mild neuropathy. I had a PET scan (negative for tumors, etc) but my bone marrow biopsy determined I have MGUS. Lamda/Kappa Light chain ratio is high and Kappa Light Chain level is high. I have also been diligent with VitD/VitK and B12, Calcium, along with other needed supplements for 8 years. I consistently exercise (resistance and cardio) 5xWeek, eat very healthy. No seed oils, preservatives, follow the "clean 15 & dirty dozen" recommendation. I figured if my MGUS progresses in the near to late future, I want my body to be as healthy as possibly both physically and mentally.
-
Like -
Helpful -
Hug
4 Reactions