Hello,
Because I am ill with various symptoms and oncologist says at MGUS level, I've been trying to understand the possible significance of the "IgA".
Are there others with IgA MGUS?
If IgA is moisture and mucosal in the body, I am wonder if the IgA MGUS and high levels of IgA immunoglobulin are responsible for my dry eyes, dry mouth, dry sinuses, gastro issues / nausea, and weight loss (18 pounds in about 6 weeks).
Do others with IgA MGUS have any of these issues?
I am praying that the oncologist is correct and I am at MGUS level and to go back to primary doctor as he didn't think MGUS would cause these symptoms after he reviewed all test results.
But my life is upside down and I am so sick. Considering getting a second oncologist opinion.
Any other IGA folks having any similar problems?
Thanks,
Cissellia
Forums
3 posts
• Page 1 of 1
Re: Any others with IgA MGUS?
Maybe someone on the forum is in your area and can recommend a second opinion haematologist who specializes in plasma cell disorders. What part of the world do you hail from?
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Little Monkey - Name: Little Monkey
- Who do you know with myeloma?: Father-stage 1 multiple myeloma
- When were you/they diagnosed?: March/April of 2015
Re: Any others with IgA MGUS?
I was diagnosed with MGUS due to my IgA level. Also sent to oncologist for suspect multiple myeloma due to non trauma right shoulder ball socket detached which was misdiagnosed when I lived in a another state, I also want to add that prior to this I had a palpative enlarged axilla lymph node that was excisional biopsied which each attempt to dissect lymph nodes they fell apart! So none to pathology and now I have blackish bruising like in axilla which causes achy pain with swelling feeling so I can not tolerate a bra or any clothing tight around axilla or ribs.
The 1st oncologist did no bone marrow biopsy but sent me to a stem cell place, when arrived I was asked why I was there and I stated I was referred to them by my oncologist, they said "You have your bone marrow biopsy results with you as we received no notes from your oncologist." I said "No" biopsy done. I was scolded by the staff "We do not see patients without first having biopsy results," so back to my oncologist and he then said "You are too young for cancer" and that was the end of my visit, I told my primary who sent me to him and I was told she would no go against him.
I have been suffering for 2 years now with pain as the right shoulder surgery failed and I am told now I have severe cartilage loss, chrondomalacia and at my age 59 years old too young and only going to get worse and shoulder replacement is not a option as the SLAP2, Bankart repair, extensive debridement did not help due to what my surgeon told me was it was not diagnosed sooner and too much damage.
I also developed widespread systemic mottled skin with my face turning a white pasty "death look " with a finger or 2 turning white, I was told it is livedo reticularis and how they came to this diagnosis was not scientifically based , some doctors want to say I have fibromyalgia or RSD even though that was ruled out by rheumatologist.
Another symptom is a solitary scalp lesion not healed in 3 years it is quarter size irregular shaped scabs, bleeds and indented in center, 1st biopsy was necrotizing folliculitis and staph when sutures removed, I was told to see a rheumatologist and was not treated for infection, second dermatologist I saw said it was precancerous but that was it and it still present. I do have to add after the 1st biopsy I developed a strange symptom after what was a painful like a poker stabbed into my scalp, I have developed a bad smell off and on a smell that is like dirty fungally smell that I only smell and it has to be related to the scalp lesion not healed 3 years, did the dermatologist maybe hit something deep during the biopsy?
I also feel my brain is not working as I am foggy a lot, cannot seem to explain things and/or get the words out, or start to speak and stop cause the words will not come out and forgetfulness so bad I gave up on list.
I again was sent to another oncologist last month and labs done which i will post in a separate message, this doctor said maybe connective tissue disease which I just saw my primary and he is sending me to a psychiatrist as he feels I am "fixated" on what I am not sure.
I am fixated on trying to find a professional with empathy as all anyone has to take one look at me and see something is wrong, widespread mottled skin with death mask and barely being able to get out of bed due to fatigue, weakness and pain that is mainly right upper extremity. I have no appetite and have to lay down often and the pain from the axilla to hand that is like a bad toothache.
I probably forgot some things as I usually do and I am sorry this is so long and probably not in correct order as I am told I am confusing and I know this is a problem and why it does not seem important or something wrong in my MD's eyes is hurtful . I also wanted to show the doctors waxy bumps like fluid filled pocket things around my eyes but I know what they think. And I have been labeled "COMPLEX" As I was? Amyloidosis or Wegners?
The oncologist said I was negative for cancer although many kappa/lambda and others off I will list them with this post;
Labs I am submitting are in red ink and have some have (c) in red. not sure what that means ? critical?
Prelimary ANC>1.5 K/uL
Mono Auto 0.23 k/ul
Neutro Auto% 45.9%
Eos Auto 2.9%
Basophil Auto 0.7%
Mono Auto 5.1%
Lymph Auto 45.2%
Serum E/P Interp (c)
Serum Immunofix / Immunoty ping (c)
Kappa Quant Free Light Chains 25.97mg/L
Kappa/Lampa Quan Free Light Chains 2.66 (c)
T3 Free Triiodothy ronine 3.5 pg/ml (c)
I will also add I have narcolespy/dataplexy HLA testing positive of them can not remember the names but do have somewhere with my medical records, my sleep disorder is severe and unable to tolerate Xyrem as it amplifies the pain ! No one seems to be able to tell me why bit I also found alcohol did the same thing? I think narcolepsy is autoimmune disease.
Another question was around age 7 tonsillectomy done and all I remember is mouth burning mouth, I am ? this as I developed a dominant thyroid nodule maybe 7 years ago and questioned if I ever exposed radiation, well I said NO but I am now wondering if my tonsils wee treated with medical radiation as I think it was used the years I had my done but there are no records. As it is known today that medical radiation used in children back then has negative impact on adult health.
I really someone can be up front and honest and maybe give me some suggestions as I am really losing hope with how my care has delivered and my quality of life is basically non existance.
The 1st oncologist did no bone marrow biopsy but sent me to a stem cell place, when arrived I was asked why I was there and I stated I was referred to them by my oncologist, they said "You have your bone marrow biopsy results with you as we received no notes from your oncologist." I said "No" biopsy done. I was scolded by the staff "We do not see patients without first having biopsy results," so back to my oncologist and he then said "You are too young for cancer" and that was the end of my visit, I told my primary who sent me to him and I was told she would no go against him.
I have been suffering for 2 years now with pain as the right shoulder surgery failed and I am told now I have severe cartilage loss, chrondomalacia and at my age 59 years old too young and only going to get worse and shoulder replacement is not a option as the SLAP2, Bankart repair, extensive debridement did not help due to what my surgeon told me was it was not diagnosed sooner and too much damage.
I also developed widespread systemic mottled skin with my face turning a white pasty "death look " with a finger or 2 turning white, I was told it is livedo reticularis and how they came to this diagnosis was not scientifically based , some doctors want to say I have fibromyalgia or RSD even though that was ruled out by rheumatologist.
Another symptom is a solitary scalp lesion not healed in 3 years it is quarter size irregular shaped scabs, bleeds and indented in center, 1st biopsy was necrotizing folliculitis and staph when sutures removed, I was told to see a rheumatologist and was not treated for infection, second dermatologist I saw said it was precancerous but that was it and it still present. I do have to add after the 1st biopsy I developed a strange symptom after what was a painful like a poker stabbed into my scalp, I have developed a bad smell off and on a smell that is like dirty fungally smell that I only smell and it has to be related to the scalp lesion not healed 3 years, did the dermatologist maybe hit something deep during the biopsy?
I also feel my brain is not working as I am foggy a lot, cannot seem to explain things and/or get the words out, or start to speak and stop cause the words will not come out and forgetfulness so bad I gave up on list.
I again was sent to another oncologist last month and labs done which i will post in a separate message, this doctor said maybe connective tissue disease which I just saw my primary and he is sending me to a psychiatrist as he feels I am "fixated" on what I am not sure.
I am fixated on trying to find a professional with empathy as all anyone has to take one look at me and see something is wrong, widespread mottled skin with death mask and barely being able to get out of bed due to fatigue, weakness and pain that is mainly right upper extremity. I have no appetite and have to lay down often and the pain from the axilla to hand that is like a bad toothache.
I probably forgot some things as I usually do and I am sorry this is so long and probably not in correct order as I am told I am confusing and I know this is a problem and why it does not seem important or something wrong in my MD's eyes is hurtful . I also wanted to show the doctors waxy bumps like fluid filled pocket things around my eyes but I know what they think. And I have been labeled "COMPLEX" As I was? Amyloidosis or Wegners?
The oncologist said I was negative for cancer although many kappa/lambda and others off I will list them with this post;
Labs I am submitting are in red ink and have some have (c) in red. not sure what that means ? critical?
Prelimary ANC>1.5 K/uL
Mono Auto 0.23 k/ul
Neutro Auto% 45.9%
Eos Auto 2.9%
Basophil Auto 0.7%
Mono Auto 5.1%
Lymph Auto 45.2%
Serum E/P Interp (c)
Serum Immunofix / Immunoty ping (c)
Kappa Quant Free Light Chains 25.97mg/L
Kappa/Lampa Quan Free Light Chains 2.66 (c)
T3 Free Triiodothy ronine 3.5 pg/ml (c)
I will also add I have narcolespy/dataplexy HLA testing positive of them can not remember the names but do have somewhere with my medical records, my sleep disorder is severe and unable to tolerate Xyrem as it amplifies the pain ! No one seems to be able to tell me why bit I also found alcohol did the same thing? I think narcolepsy is autoimmune disease.
Another question was around age 7 tonsillectomy done and all I remember is mouth burning mouth, I am ? this as I developed a dominant thyroid nodule maybe 7 years ago and questioned if I ever exposed radiation, well I said NO but I am now wondering if my tonsils wee treated with medical radiation as I think it was used the years I had my done but there are no records. As it is known today that medical radiation used in children back then has negative impact on adult health.
I really someone can be up front and honest and maybe give me some suggestions as I am really losing hope with how my care has delivered and my quality of life is basically non existance.
-
pappygal - Name: cathy
3 posts
• Page 1 of 1