Have you ever experienced... before a diagnoses or presenting symptom of CIDP; numerous and benign fatty tumors, extremely elevated triglycerides (above 2000), a feeling of a buzz of electricity everywhere on the body, and a type 2 diabetes diagnoses from doctors, wherein they attributed these strange and seemingly unrelated symptoms as type 2 diabetes?
I'm wondering if my destroyed myelin (lipids mostly), from early and undiagnosed CIDP, were responsible for fatty tumors and triglycerides that proliferated in a 2-3 year period of time, 15 years ago.
A few years ago, here in Israel, I had GBS which them morphed into CIDP, for which I'm getting Steroids infusion once a month.
This last Christmas I had a non-malignant tumour removed. This was 7.5 cm x 6 cm x 4 cm. (3” x 2.4” x 1.6”) and was, as the surgeon said, kissing the kidney. (That’s a translation from Hebrew!)
The biopsy is full of very long medical terms, with a conclusion that it was possibly due to a IgG4 related disease.
A few years ago, here in Israel, I had GBS which them morphed into CIDP, for which I'm getting Steroids infusion once a month.
This last Christmas I had a non-malignant tumour removed. This was 7.5 cm x 6 cm x 4 cm. (3” x 2.4” x 1.6”) and was, as the surgeon said, kissing the kidney. (That’s a translation from Hebrew!)
The biopsy is full of very long medical terms, with a conclusion that it was possibly due to a IgG4 related disease.
Shortly after my numbness first occurred, LONG before I was diagnosed with CIDP (which took 4 years and 8 doctors to arrive at), I did have one "lipoma" removed near the little bone at the top of the shoulder. I have had no more of these develop, but your post is the first I've ever heard of anyone asking if there is a connection. I think the trouble with CIDP is that if there are only 1.5 to 3.5 new cases per million people diagnosed each year, we're not of much interest to researchers. I have read a lot from CIDP patients saying they were on some combination of any two of three types of medication, 1) blood pressure medications, 2) cholesterol medications (statins), and/or 3) antibiotics. I suspect any two of these three medications creates the "perfect cocktail" (read that as chemical s#!t storm) that starts this autoimmune disease. Still, since not everyone who is on these drugs gets CIDP, there must be another element or elements that cause the disease to begin. I'm interested in the response to your question. If there are a lot of people who have CIDP who also have had these fatty tumors, maybe that's another thing the medical community should be investigating.
People world-wide get this disease (CIDP/GBS). It is not inherited, so genetic changes at the chromosome level may produce mutant IgG, and then T-cells are activated then become anti-anti-anti-bodies from a initiating monoclonal T-cell. Not everyone world-wide has access to the "perfect "cocktail" of prescribed drugs. CIDP was diagnosed long before many drugs of these drugs were developed. Franklin Roosevelt for example.
My thinking is that the body produces a slew of reactive chemistry (hormones, cytokines, toxins) in response to stress, surgery, flu vaccine, bush meat, infection and perhaps extreme emotional states. These states then make the perfect cocktail that become an auto-immune disease.
Myself - in 2011 my father died, I had a very complex surgery (that never healed properly), the dissolution of a heavenly romance, a flu shot and soon after these events, I experienced something that seemed like GBS, but was then diagnosed by two neurologist as CIDP. Although, I seemed to have had a smoldering CIDP for 15 years. And, my father was an entomologist and I played, as a young boy, in his lab where insecticides, even radioactive insecticides were routinely used
The interaction of body chemistry, of our own making, may be the cause of CIDP.
Something has to explain this disease afflicting such a diverse smattering of people, in different places, of a certain age, mainly male and why some treatments work and some don't.
Those extreme emotional states of humans... toxic and perhaps deadly if never resolved. Add surgery, Add introduced antibodies (flu shot) = a host of auto immune diseases?
Thank you, Esteban. I'm only fairly recently diagnosed, so I'm still gathering information (though the onset was 4 years ago). I was not aware that surgery, stress and extreme emotional states are also common denominators. My numbness appeared for the first time three days post-laparoscopy, which was just a few months after an extremely emotional break-up (as you say, the dissolution of a heavenly romance).
estaban said:
People world-wide get this disease (CIDP/GBS). It is not inherited, so genetic changes at the chromosome level may produce mutant IgG, and then T-cells are activated then become anti-anti-anti-bodies from a initiating monoclonal T-cell. Not everyone world-wide has access to the "perfect "cocktail" of prescribed drugs. CIDP was diagnosed long before many drugs of these drugs were developed. Franklin Roosevelt for example.
My thinking is that the body produces a slew of reactive chemistry (hormones, cytokines, toxins) in response to stress, surgery, flu vaccine, bush meat, infection and perhaps extreme emotional states. These states then make the perfect cocktail that become an auto-immune disease.
Myself - in 2011 my father died, I had a very complex surgery (that never healed properly), the dissolution of a heavenly romance, a flu shot and soon after these events, I experienced something that seemed like GBS, but was then diagnosed by two neurologist as CIDP. Although, I seemed to have had a smoldering CIDP for 15 years. And, my father was an entomologist and I played, as a young boy, in his lab where insecticides, even radioactive insecticides were routinely used
The interaction of body chemistry, of our own making, may be the cause of CIDP.
Something has to explain this disease afflicting such a diverse smattering of people, in different places, of a certain age, mainly male and why some treatments work and some don't.
Those extreme emotional states of humans... toxic and perhaps deadly if never resolved. Add surgery, Add introduced antibodies (flu shot) = a host of auto immune diseases?
There appears to be little consensus on the causes of CIDP. I'm only speculating about what elements of life and spirit might effect the complex body chemistry of hormones, DNA and thousands of protein complexes, or protein fragments floating around in our organs, lymph nodes, blood vessels; all in constant cellular flux, combination or destruction.
To me, the body exists only to carry around our brains and to reproduce our species. Anything that disturbs these two things, IMO, sets us up for diseases, either physically of mentally. I like to reduce life to the least common denominators.
CIDP/GBS seems to be caused by varied factors: it appears at specific ages, is somewhat gender specific, its effects are affected in world-wide patterns of segments of certain populations, and these IgG/T-cell malformations only target nerve roots of the PN.
Somewhere there is a common denominator for CIDP. Who's to say the key element of our mutant IgG/T-cell proliferation isn't caused by extreme emotions coupled with physical trauma or some other existential quagmire of the soul?
I would like to see clinical trials wherein psychological profiles are included so brain chemistry (the place that may initiate CIDP) is also accounted for.
Or perhaps I am only grasping at straws in frustration and anger over my "chronic" condition.
Want to Dance Again said:
Thank you, Esteban. I'm only fairly recently diagnosed, so I'm still gathering information (though the onset was 4 years ago). I was not aware that surgery, stress and extreme emotional states are also common denominators. My numbness appeared for the first time three days post-laparoscopy, which was just a few months after an extremely emotional break-up (as you say, the dissolution of a heavenly romance).
estaban said:
People world-wide get this disease (CIDP/GBS). It is not inherited, so genetic changes at the chromosome level may produce mutant IgG, and then T-cells are activated then become anti-anti-anti-bodies from a initiating monoclonal T-cell. Not everyone world-wide has access to the "perfect "cocktail" of prescribed drugs. CIDP was diagnosed long before many drugs of these drugs were developed. Franklin Roosevelt for example.
My thinking is that the body produces a slew of reactive chemistry (hormones, cytokines, toxins) in response to stress, surgery, flu vaccine, bush meat, infection and perhaps extreme emotional states. These states then make the perfect cocktail that become an auto-immune disease.
Myself - in 2011 my father died, I had a very complex surgery (that never healed properly), the dissolution of a heavenly romance, a flu shot and soon after these events, I experienced something that seemed like GBS, but was then diagnosed by two neurologist as CIDP. Although, I seemed to have had a smoldering CIDP for 15 years. And, my father was an entomologist and I played, as a young boy, in his lab where insecticides, even radioactive insecticides were routinely used
The interaction of body chemistry, of our own making, may be the cause of CIDP.
Something has to explain this disease afflicting such a diverse smattering of people, in different places, of a certain age, mainly male and why some treatments work and some don't.
Those extreme emotional states of humans... toxic and perhaps deadly if never resolved. Add surgery, Add introduced antibodies (flu shot) = a host of auto immune diseases?
Hmmm, interesting. 25 years ago (long before any CIDP symptoms) I had a benign lipoma removed from my shoulder. I didn't think much of it as it was benign and seemed to be fairly common (a friend had 7 or 8 on his legs). However, now a year into my diagnosis (and several years after symptoms developed), there seems to be a new one, and it's in the same spot as the one that was removed so long ago.
I'm not going to attribute causation, and even the correlation is pretty faint. But I'm just tossing it out there into the pool of info about this.
People with CIDP/GBS must have something in common. I have 40-50 benign lipomas, the majority of them on my arms and legs, which conincidently is the loacation where most CIDP symptoms first manifest themselves in most people. Myelin sheathing, produced from Schwan Cells, are mostly lipids (fat). This may totally be coincidence, unrelated and speculative, but, like you, just tossing this out there.
Tingle said:
Hmmm, interesting. 25 years ago (long before any CIDP symptoms) I had a benign lipoma removed from my shoulder. I didn't think much of it as it was benign and seemed to be fairly common (a friend had 7 or 8 on his legs). However, now a year into my diagnosis (and several years after symptoms developed), there seems to be a new one, and it's in the same spot as the one that was removed so long ago.
I'm not going to attribute causation, and even the correlation is pretty faint. But I'm just tossing it out there into the pool of info about this.
Mine was about 2.5 inches in diameter and about 1/2 inch thick.
I don't doubt that we all have things in common, I'm just cautious about attributing causation or even correlation too easily. It's good that you posted this topic (although it might be better if the topic title included a few keywords, such as "lipoma"). After all, we might find correlations that the research has overlooked.
estaban said:
People with CIDP/GBS must have something in common. I have 40-50 benign lipomas, the majority of them on my arms and legs, which conincidently is the loacation where most CIDP symptoms first manifest themselves in most people. Myelin sheathing, produced from Schwan Cells, are mostly lipids (fat). This may totally be coincidence, unrelated and speculative, but, like you, just tossing this out there.
In Hawaii I see people in shorts, swim suits, Speedos, topless, etc., and I've seen these types of tumors on many people, with many more than I have, and larger, like yous. (I did wondered about those guys in Speedos though.)
It really drives me nuts that a cause is not named for CIDP! GBS, has a cause... a flu shot, or recent illness, or too many anti-depressants, perhaps. I double anti-depressants up when I get neurotic, like all this week, when I obsess over something or some cause I don't understand. I read and read and read... down to the molecular level, and I tell you... the eyes really get tired reading at that level. ZING! Apparently, a gene is malfunctioning and not turning off our T-Cells and they attack... like the lipomas just kept appearing on me, then stopped. Why?
Maybe too much coffee today!
Tingle said:
40-50 of them! Wow! I hope they're small. :-/
Mine was about 2.5 inches in diameter and about 1/2 inch thick.
I don't doubt that we all have things in common, I'm just cautious about attributing causation or even correlation too easily. It's good that you posted this topic (although it might be better if the topic title included a few keywords, such as "lipoma"). After all, we might find correlations that the research has overlooked.
estaban said:
People with CIDP/GBS must have something in common. I have 40-50 benign lipomas, the majority of them on my arms and legs, which conincidently is the loacation where most CIDP symptoms first manifest themselves in most people. Myelin sheathing, produced from Schwan Cells, are mostly lipids (fat). This may totally be coincidence, unrelated and speculative, but, like you, just tossing this out there.
Tingle, I think you're wise to be "cautious about attributing causation or even correlation too easily." Still, "throwing it out there" seems to be about all we have going for us to at least TRY to identify those common denominators. I know I have not been asked a series of questions by ANYONE since being diagnosed. It doesn't seem to me that there's much going on to try to get to the bottom of this stupid disease. And perhaps that's as it should be if there are only 1.5 to 3.5 new cases diagnosed each year per million people. Why spend a lot on research when there would be so few of us who would benefit? Let's keep on "throwing it out there" with our questions.
Esteban, you also asked about extremely high triglycerides. Mine are not high.
What about other odds and ends, like: tattoos, antidepressants, certain kinds of fillings in the teeth/substances used in dentistry, maybe injuries we have in common, foods we eat (I suspect diet colas are deadly)?
HERE is bit to throw out there: M spike in the central nervous system, elevated IgM , monoclonal gamapathy... in my deep reading, at the molecular level regarding CIDP/GBS, the IgM and monoclonal gamapathy of undetermined significance (MGUS) seems to pop up frequently. MGUS is often mentioned in CIDP clinical trials as a determining or disqualifying factor.
I believe MGUS will only present itself from a spinal tap and most people never know about having it and will probably die long before the MGUS morphs into B cell blood cancer: multiple myeloma , Waldenstrom's cancer and other non-Hodgkins.
Paraneoplastic syndromes from these active or smoldering cancers can cause the same or similar destruction of myelin as CIDP.
After all the blood test that apply to MGUS, I was placed in a low risk category, However, I get MGUS blood tests every 3 months. If it was progressive, I would fall into the Waldenström's Macroglobulinemia areana because of elevated and increasing IgM.
Just curious— is anyone taking monoclonal anti-CD20 antibody rituximab?
Want to Dance Again said:
Tingle, I think you're wise to be "cautious about attributing causation or even correlation too easily." Still, "throwing it out there" seems to be about all we have going for us to at least TRY to identify those common denominators....
What about other odds and ends, like: tattoos, antidepressants, certain kinds of fillings in the teeth/substances used in dentistry, maybe injuries we have in common, foods we eat (I suspect diet colas are deadly)?