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Living with Polyneuropathy CIDP, GBS, & CMT

What caused CIDP in you?


#61

I sorta think I asked for it... I'd been asking god to kill me for years, and then I became ill with what seemed to come with a pretty good death option, but real slow. So, I took my time and decided that I'd been a little whining princess and grew up a lot... Thanks for not killing me yet.

It all started after a major new year's eve hangover and flu. I think I first noticed my toes not heating up, even after the hottest and longest showers a couple weeks later. By April I was hospitalized with no use of my arms and legs with the upper part of my face paralyzed.

My diagnosis had be retarded by my general-practitioner's attitude/opinion of those who ever smoked cannabis. They did recognize my complications and get the initial test needed done, but then dodged me for consultation and a referral.

I found my neurologist in the yellow pages. We took another 5 days for exclusionary testing and then I was off to an oncologist. I had to be hospitalized to fast track evaluation and treatments. In the end, they'd filtered my blood and given me anti-spasm meds and a schedule of physical, hydro, occupational therapy and an apheresis schedule for every 14 days.

Apheresis is dangerous and not ideal, but the safest first response of all the responses for our symptoms.

I'm girl and was young so, steroids weren't a popular option. I'd have two new hips by now if this were the course I'd have to take.

IvIg started in my 9th month of disease. All has been very good. Most of my initial damages have been rehabilitated nicely. I do have issues with blemishes surrounding the IvIg and had been being treated for discoid lupus, but settle now for the breakout than the side-effects from those drugs. The stuff is bad for the eyes. What good is my face being pretty if I can't see it for myself to make sure there's not a boogie hanging from the nose or eye? Frankly, I don't think I suffer discoid lupus, but adult acne. Yes, we did do a biopsy that showed positive, but so... Lupus seems transient and many things look just like it, and going blind isn't really a path to nice skin.

I wish everyone could have it as well as I have, minus my first doctor and zitty face...

I do have to complain that as I have become very well read and studied about my disease, I am finding it impossible to find a doctor practiced enough to proficiently deal with me. I am always having to teach them, as I pay them to learn it(BAH). And then they all wanna "try this" or "that", whatever morbid curiosities the human has harbored within... Uh, no thanks. My retort to such suggestions is: "Would you suggest this for your child or Mom?" and look'm square in the pupils as they answer. Dilated pupils are lying ones.

I see this disease as one that won't kill us, really, but can leave us available to be killed. Be unavailable as much as possible.

Best and most desired outcomes to Everybody! t.


#62

Just think you got your prayers answered, unlike most of us who just wanted a good neuro consultant.
So now you got what you wanted it looks like you have chickened out...well tough cookie dear. Join the club...you can ride the roller coaster just like the rest of us.
toe said:

I sorta think I asked for it... I'd been asking god to kill me for years, and then I became ill with what seemed to come with a pretty good death option, but real slow. So, I took my time and decided that I'd been a little whining princess and grew up a lot... Thanks for not killing me yet.

It all started after a major new year's eve hangover and flu. I think I first noticed my toes not heating up, even after the hottest and longest showers a couple weeks later. By April I was hospitalized with no use of my arms and legs with the upper part of my face paralyzed.

My diagnosis had be retarded by my general-practitioner's attitude/opinion of those who ever smoked cannabis. They did recognize my complications and get the initial test needed done, but then dodged me for consultation and a referral.

I found my neurologist in the yellow pages. We took another 5 days for exclusionary testing and then I was off to an oncologist. I had to be hospitalized to fast track evaluation and treatments. In the end, they'd filtered my blood and given me anti-spasm meds and a schedule of physical, hydro, occupational therapy and an apheresis schedule for every 14 days.

Apheresis is dangerous and not ideal, but the safest first response of all the responses for our symptoms.

I'm girl and was young so, steroids weren't a popular option. I'd have two new hips by now if this were the course I'd have to take.

IvIg started in my 9th month of disease. All has been very good. Most of my initial damages have been rehabilitated nicely. I do have issues with blemishes surrounding the IvIg and had been being treated for discoid lupus, but settle now for the breakout than the side-effects from those drugs. The stuff is bad for the eyes. What good is my face being pretty if I can't see it for myself to make sure there's not a boogie hanging from the nose or eye? Frankly, I don't think I suffer discoid lupus, but adult acne. Yes, we did do a biopsy that showed positive, but so... Lupus seems transient and many things look just like it, and going blind isn't really a path to nice skin.

I wish everyone could have it as well as I have, minus my first doctor and zitty face...

I do have to complain that as I have become very well read and studied about my disease, I am finding it impossible to find a doctor practiced enough to proficiently deal with me. I am always having to teach them, as I pay them to learn it(BAH). And then they all wanna "try this" or "that", whatever morbid curiosities the human has harbored within... Uh, no thanks. My retort to such suggestions is: "Would you suggest this for your child or Mom?" and look'm square in the pupils as they answer. Dilated pupils are lying ones.

I see this disease as one that won't kill us, really, but can leave us available to be killed. Be unavailable as much as possible.

Best and most desired outcomes to Everybody! t.


#63

WHAT A PITY I CANNOT TRULY VENT MY SPLEEN REGARDING THIS FLIPPANT PERSON…WITH A DEATH WISH? Spare me the drama! Who needs the high handed crap! Read? What…the Enquirer? Give me a break! Needs a more qualified neuro…they wanted to die…,why the fuss now? Just get on with it.


#64

I'm sorry to have come off high handed and flippant. I meant not to upset or offend but share my experience. I do not take lightly this disease or anything any one of us has been through. As to the roller-coaster ride you describe, how is any life not such a ride anyway...

Now, as for your suggestion to "just get on with it.", seriously... Why would you ever say something like this, however deeply you may feel this, to someone who has admitted to such a deep illness within themselves? Harsh.

Call it a 'near death experience', but, yeah, I gutted up just so we could all learn how to heal. Yes, it's not the greatest career, but as we(the patient and doctor) tackle diseases, the future benefits. Some say suicide is selfish, so I guess I stopped being so.

I have still have struggles and frustration about having this disease. Sure, I'd love to never have to have another treatment to be free to seek to have the best 'ride' I can. It's come to be what it is though.

For those in the woods, I welcome any questions anyone wants to know about the methods and treatments that have worked for me. I'm not sure of the TOS here and don't want to make the moderator mad... We aren't supposed to name names and the like.

I've seen many other people deep in the forest of diagnosis and am bewildered by how hard it is for some to find a way to go that works for them while others seem so thwarted. I don't know why my experience was so smooth. It doesn't seem fair. Gosh, does any of it?

-anyway...

I do wish you the best and everything you ask for(minus me offing myself...) Again, I am really sorry for getting your goat


#65

Toe, I so get what your saying. I tried to justify why this happened and found reasons. The reasons all explain, be it flu, stress, genetics, hidden toxins in my water, soil or food. Maybe the perfect storm from the combination of all. But that still doesn't explain why those with my genetics who have stress and have gotten the flu didn't get this. I am not saying it wouldn't have mattered because I think it does. I have exhausted not only myself looking for the answer but my doctors and family too. I remember thinking how good it was that I got it instead of my kids. I thought everyone would be safe because the odds of getting MADSAM are about 1 in 10 million which covers everyone I love and the whole state really. I took one for the team which makes all of this suffering worth it. But the truth is, at least for me at this point 5 years into it, I don't know and that scares me because it's a big thought living with this thing I have, without any idea of how I got it and not knowing how to give it back.


#66



mabes said:

Toe, I so get what your saying. I tried to justify why this happened and found reasons. The reasons all explain, be it flu, stress, genetics, hidden toxins in my water, soil or food. Maybe the perfect storm from the combination of all. But that still doesn't explain why those with my genetics who have stress and have gotten the flu didn't get this. I am not saying it wouldn't have mattered because I think it does. I have exhausted not only myself looking for the answer but my doctors and family too. I remember thinking how good it was that I got it instead of my kids. I thought everyone would be safe because the odds of getting MADSAM are about 1 in 10 million which covers everyone I love and the whole state really. I took one for the team which makes all of this suffering worth it. But the truth is, at least for me at this point 5 years into it, I don't know and that scares me because it's a big thought living with this thing I have, without any idea of how I got it and not knowing how to give it back.

Thanks for the reply! 13 years for me and I am just like you, still in the mystery. I find us getting closer, tho. There is talk of viral mimicry that has some how become a part of our cell production as well as new understanding of our own proteins and their interactions. Heck, I see we are discovering that all those cooties we used to have in our tummy and chute actually helped keep us well. It seems our body has a schzoid-complex of a sort where it builds itself and then self-destructs. The cooties, we are learning helped keep our immune system "entertained" and we evolved a lovely symbiosis. Since the 50's society has been systematically "de-wormed".

Genetics and "family-line" is more than we understand. For instance, the quill material in the feathers of birds is the same protein as the shell on shrimp. (Got a pal with allergies...) Understanding proteins seems to be a major key toward pinpointing where this all begins and then to figure how to stop it.

I'm glad this has kept itself real rare and not contagious... Tho, the mystery is an itch-bay...

I too am glad to be the one with the disease... However, Friend, do take heart that those who love you are suffering this in another really sucky way and likely a secret reason most of us prefer to be the diseased... The helplessness to mend a loved one is a level in the Dante's inferno. Suffering is easier than enduring witnessing, in my opinion. Tho, I do feel those who feel otherwise. I guess that's why we call it "suffering"...:)

We will have to "break some eggs" to find the answer(s), given the m.o. of how we learn. Many fields in medicine don't share with others and being in a capitalistic society and open market economy doesn't really help to consolidate and cross reference information on our one great system. Our primary care phys. is supposed to be able to do this for us, BUT, this requires they have time, interest and dedication.

A doctor I respect very much said that some of what we are seeing today is from in-breeding... Ew. But if you think about us over the course of 10's of thousands of years, you and me are siblings. I thought Chernobyl did this and other stuff to us, but according to this doctor, no... It's from rampant human cell division on a massive scale.

I've been looking into how our electrical system works and it's relationship to our mobility, muscle synthesis and reflexes. I think this creepy stuff slid in from there somehow... There is a university on this as we speak. I'll share my links with you...

I write a ton, sorry.

Best to you and yours. Thanks for being... I thought I was alone, even here. t.


#67



purple sunflower said:

Hi Donna,

I am seeing a neurologist that specializes in CIDP. He is one of the top 10 in the United States. He is located at the University of Southern California (USC University), in the Keck Medicine of USC. His name is Dr. Said R. Beydoun, MD,FAAN. I do not now what state you are living in, so I have now idea if this will help you.

I hope you find help soon.

Linda

Thanks for replying, but I live in Canada; and my options are nil at present.


#68

Aloha toe,

Your first post was of real and true emotions and I'd say you have the knack for the art of writing. Remove the fist person "I" tense and express yourself in 3rd person with more objectivity and detachment... and then go for a short story or novella in the YA genre. Or keep posting here! I enjoyed reading about your life and I liked your writing style.

I've concluded that my IvIG therapy, which is 120 grams every two week, or my insidious and life-long CIDP is affecting my cognition; causing incorrect responses to people and situations. Although CIDP is not suppose to effect the upper neurons, I recently read in a medical internet article that in some cases it does. It certainly affects my writing, thinking and happiness, although those dysfunctions may be depression from being stripped of working fingers and toes, and my throbbing lumbar and cervical areas.

This mental dysfunction of mine is more apparent after two days of infusions. My infusions are usually done on Monday and Tuesday with the third infusion on a Friday. All infusions are 40 grams over six hours.

Cause and effect... cause and defect... WHY???

I read recently that money grants were handed out to a handful of researchers to study CIDP... for $150,000 each. At this rate the etiology, the cures and real pain relief from CIDP is probably decades away.

Recently I changed primary care physicians. This new doctor seemed to scoff at CIDP. He evaluated me with what he knew, in his experience, caused similar symptoms to CIDP; such as advanced diabetic neuropathy (which I do not have at an advanced level!). It was a surreal experience; three neurologist confirmed CIDP and yet here I was starting from scratch again!

It's a mad, mad, mad, mad, mad, mad, mad, mad world out there and all of us are tumbling and fumbling around in it, trying desperately to find meaning to this *&^%@^##!!! disease!

I'd hate to anyone get these diseases (CIDP or GBS), but if Oprah did... well, then a cure would most likely be available in less than a year... girlfriend... lol!


#69

Domo, Estaban-san! I appreciate your tips and support. I agree with all you say but, am uncomfortable speaking in third person. That's where we speak in 'we, us, they' terms, right? It's so British.(lol) Gwod...after being spat at as "high-hand", sheesh, me thinks me should just keep me to me. Imagine this entire post with "me" where there is an "I"...

I've been on other 'patient-websites'... and wrote long winded stuff there too. How do you write about an expansive subject as 'chronic disease' and not make it novel length?

LOL...as to the "speed" of humans curing disease: It does seem that money is all we need to find answers, but it's actually more than that. It takes brains and application, creativity and destruction and a ho' lotta time....and why man created a hundred million ways to get-off, because patience is hard.

I think a lot about when I first started to fall ill this way and try to figure how this switch got flipped, what the "switch" is, and how to turn it off or make it useful.

Eastern medicine suggests for our disease we avoid certain foods. Ocean foods, foods(animals) that are hatched and the eggs, preservatives that stabilize citrus acids and super funky nitrates, like those found in cup-o-noodles, are to be avoided. I wonder about these foods prior to being triggers. I had been warned about the mercury in sea food, but being Japanese'ish, eating from the sea feels better in my tummy than cow.

I wonder also about the way I ran my body while I was well and the possibility of my having conditioned a metabolism for myself that doesn't tolerate being idle. My habit was to work from dawn to dusk, while only taking food in the evening and running on it the next day. I call it: The cave-person diet. Well, one day I forgot the general rule about the pyramid paradigm we work in and caused a brick above me to fall on my head. Being fired by folks we don't respect is an amazing emotional/egotistical assault. Well, it was for me, anyway. I went to a really low and dark place...sitting there angry, doing nothing, drinking reconstituted spiced cider constantly. (The cider is nothing but a packet of all the things Chinese medicine says to avoid.)

I've read that we find this disease often in famine nations and think about my commonality... I did make my body feed on it's self the last two or three hours of every shift I'd worked for decades. I know I did. I've always been hyper and a poor daytime eater. But once the sun goes down, I mao.

So, in my 'toe' perspective, I imagine I'd caused my body to respond to my demands with a protein that would do as I asked; however these guys are like an elite army and what do we know these factions to do when there is no war to be won? Beat up on those not of the army... Go figure we see the news headlines we do. The issues are cellular, not social.(in my wordy opinion:) )

My step-mom always warned of us girls over exerting our bodies and that weird things happen when we don't be gentle to the whole self and not just our ego/image. I'd always thought the woman had "snow white syndrome" but, gosh, you know, I think the broad might have a point.

I wonder what we were all doing the 3 years before our first symptoms. How many(if any) are like me? What do we all look like? What's our average muscle to fat ratio? Was there a recent lose? What was the bulk of the diet?

Your new doc's wonder about early onset diabetes twinkles in my mind a bit... Man, you wanna talk about a bunch of folks suffering long-term human ignorance. Diabetes has got to be a THE head-banger. I mean really! If we aren't failing horribly with synthetic insulin, we are continuing to make and eat things that make more diabetics...*face-palms* When the aliens land, I'm saying I'm a dog and deny knowing any of us... We can share a pack if you like.

They can see which "fighter-cell" it is that is causing the disease but don't know how to change it's behavior without hurting everything too. Can anyone else see exactly what cells are funky your systemic groove?

I see an oncologist for my 'treats'. I'm confused by those being treated by neurology...I thought they were more mechanics and electricians than about bone-marrow and blood proteins.

I did have a situation during the earlier parts of diagnosis while getting a nerve conduction test follow up, Mr. Neurologist was poking around about my treatment direction and offered his department's ideas for a longer remission, blah-blah-blah... Frick'n claim jumper! He had roids to offer above IvIg. At the time I was 30 and asked him what my bones would look like 5 years down his road... He didn't like facing his drug's side-effects, but rather wanted to exploit IvIg's. Busted hips&a hunched back or stroke, gee, which would suck less...?

And then it struck me: Any doctor treating us that does NOT understand the importance of our simple belief in our doctor and course of choices; and EVER undermine this without seriously seeing a threat, but just to, I don't know, schmooze patients from another practice to increase their's is a gigantic P.O.S. pfft, I thought only hookers hijacked clients.

I wonder how often others have been led around this way... See why we should never go to the doctor without our best defender in tow. I'll bet none of them are like this when our mom or best pal are present; just like most predators won't offer candy when auntie is watching... I know they are humans too. I'm just stupid-silly enough to think they'd be different and not have the same trappings any average person would.( like laziness, hubris, ego-mania, psycho-social, brain-farts and fear...) Medical school seems like such a long b!t@h & all. You'd think the experience would build a better human, but it does cost tons and maybe that is what is botching their manners...debts and the realization that they, after all the effort, are now a slave to their loan payments... How bunk.

I've toe'tally derailed your thread... crumb.


#70

I had breast cancer previously, and underwent very heavy chemo treatments. The chemo affected my immune system which caused the CIDP. If I hadn't done the chemo, I wouldn't be alive, so I guess this is the lesser of the two evils. I am trying to work full-time which is extremely exhausting, but I just keep pushing.


#71

Tammy, you gave me a different perspective just now when I read your comment. I needed that insight because it's been a rough road!


#72

Aloha toe,

A fine roll of thought and words, and told with a unique style. For a minute I thought I was reading a Phillip Dick or Bill Burroughs' novel.

My diabetes developed after I was shot with a shot gun in my left middle abdomen; up one inch more and it would have hit my heart and death would have made my day. That accident could have been the slow-acting trigger for my CIDP, as I am "filled full of lead" as they say in the movies.

I can only speak for myself, but I am disturbed when I read medical or informational sites about CIDP. The descriptions of CIDP are usually cut and dried and, well, wimpy and dumbed-down. The literature never mentioning pain 25/7, progressive paralysis, how CIDP can ruin everything you do and feel and love and are.

I've noticed that when I tell a little white lie, when I tell someone my disease is Multiple Sclerosis, I get that, "Oh you poor soul!" look from them. I'm not denigrating people with MS, but people with CIDP/GBS suffer in many of the same ways that MS people do. However, I say CIDP and they look at me dumbfounded, always waiting for me to explain and define the letters, C-I-D-P.

And, have you ever noticed that after explaining CIDP people still don't grasp the levels of muscle dysfunctions and pain going on inside you? They never under stand that chronic means 24/7... and 24/7 forever!

So after that little rant... go swim laps in a pool! I now swim every day, 50 laps, rain or shine. I use SPF 100 sun block! The Hawaiian sun is brutal and skin cancer is the last thing I need!


#73

estaban, Sorry about the accident. It's one thing to get over an injury like that and another to carry traces of it. Your aerobic swimming has probably saved you by constantly cleaning it out of your body. I read that when our bodies are low in the essential minerals we need,( Iron, magnesium, and others but calcium being the most) our body will draw from the toxic ones either internal or external sources. So if there are traces of lead in you, your body will draw from it less if given a choice. Along with aerobic exercises I have been taking Calcium and Magnesium Citrate because they bond with oxalates and other "fee radicals" and can be filtered out. I have started on iodine too. It has helped my meds work better. Just taking the daily allowances can really make a difference.


#74

Your #11, toe would like to reply to you in full color and girth. Please accept my friend request so I can fill your mail box with my toe-jam. Now I gotta go look up Phil and Bill... Toe is as filled with brain matter as your first 10.

When telling others of my disease, folks think I'm really educated for what I know. Well, damn, after a decade of this business, we should hope to get smarter about it.

I try to hang out with as many chronically ill folk as I do well ones. Being sick, having relatives is soothing. As well in being sick, having well folk around inspires us and offers them an opportunity to consider that what they have in health can go away, but not always all the way or forever.

Death is easy... We all know this. Esti-san, your being here is the glory we all look for when peering into the horizon of possibilities. Yeh-yeh, to not have been shot would have been the cooler event than what we have now. Please don't equate "dead" with "having NOT been shot". Babe, it just ain't the same.

I'm not glad for any part of you're suffering but am really glad you are here and that you communicate kindness toward me. It makes a difference to me that is real. I'm sorry for the times you aren't glad to be experiencing you-experiencing life. I understand these times. I just want to remind you that you would have been or will be missed...

Thanks for being. toe


#75

'Naked Lunch'... yeah...that's me, buddy. You've pegged me.


#76

LET ME FIGURE OUT ...oops, let me figure out how to friend you, toe. My email is filtered so I only get one email per day... kidding. And we all thought Steely Dan was just a band, lol.

Best to you!

toe said:

'Naked Lunch'... yeah...that's me, buddy. You've pegged me.


#77

I woke up one morning and my legs would not work. Couldn't even wiggle a toe. No movement below the waist. This was 8/99. I had been in NYC producing a record and I went out riding in Central Park every day. This was when we had all the birds dying everywhere. I know I ran over a few during this month long stay. I ended up with Viral Encephilitis or West Nile virus.

Two years later, my whole body went numb. I was diagnosed with Guillan Barre' Syndrome. Turning into CIDP after many issues with numbness, Both my GP and Neuro doctor belives it was the West Nile virus


#78

I had Lymphoma in April, did chemo until July. Remission. Had back surgery in August. My neuro says Lymphoma or the chemo or both caused CIDP. I have foot drop in right foot can I expect it in both?


#79

thanks toe, great reply and novel!

Protein folding... in the humeral soup, of our liquid magnificence, these proteins are giant organic structures that respond to electrical fields, which other organic proteins create. I've read into this level and apparently the mis-folded or partially folder transmission proteins that are released by cytokines send incorrect messages... ATTACK, ATTACK. It may be as simple as a protein that folds over and connects with itself and then all hell breaks lose .... but why? It is a command from DNA replication after an adaptation of a mutant chemistry at the genome level? Stem cells therapy would then start up the genome again and lick this mother!

OR the electrical field in our body soup is off by a smidgen and the body then turns against it self. Can we correct the humeral soup of self? What can we, could we do that would radically alter our humeral soup in regards to IgG malfunctions?

I can't accept the LivingWith part of CIDP and wish people would concentrate on CIDP and leave other afflictions that are not related to CIDP on other med web sites.

CIDP is one disease, a diseasse caused by a cascade of chemistry at the immune cell level.



toe said:

Domo, Estaban-san! I appreciate your tips and support. I agree with all you say but, am uncomfortable speaking in third person. That's where we speak in 'we, us, they' terms, right? It's so British.(lol) Gwod...after being spat at as "high-hand", sheesh, me thinks me should just keep me to me. Imagine this entire post with "me" where there is an "I"...

I've been on other 'patient-websites'... and wrote long winded stuff there too. How do you write about an expansive subject as 'chronic disease' and not make it novel length?

LOL...as to the "speed" of humans curing disease: It does seem that money is all we need to find answers, but it's actually more than that. It takes brains and application, creativity and destruction and a ho' lotta time....and why man created a hundred million ways to get-off, because patience is hard.

I think a lot about when I first started to fall ill this way and try to figure how this switch got flipped, what the "switch" is, and how to turn it off or make it useful.

Eastern medicine suggests for our disease we avoid certain foods. Ocean foods, foods(animals) that are hatched and the eggs, preservatives that stabilize citrus acids and super funky nitrates, like those found in cup-o-noodles, are to be avoided. I wonder about these foods prior to being triggers. I had been warned about the mercury in sea food, but being Japanese'ish, eating from the sea feels better in my tummy than cow.

I wonder also about the way I ran my body while I was well and the possibility of my having conditioned a metabolism for myself that doesn't tolerate being idle. My habit was to work from dawn to dusk, while only taking food in the evening and running on it the next day. I call it: The cave-person diet. Well, one day I forgot the general rule about the pyramid paradigm we work in and caused a brick above me to fall on my head. Being fired by folks we don't respect is an amazing emotional/egotistical assault. Well, it was for me, anyway. I went to a really low and dark place...sitting there angry, doing nothing, drinking reconstituted spiced cider constantly. (The cider is nothing but a packet of all the things Chinese medicine says to avoid.)

I've read that we find this disease often in famine nations and think about my commonality... I did make my body feed on it's self the last two or three hours of every shift I'd worked for decades. I know I did. I've always been hyper and a poor daytime eater. But once the sun goes down, I mao.

So, in my 'toe' perspective, I imagine I'd caused my body to respond to my demands with a protein that would do as I asked; however these guys are like an elite army and what do we know these factions to do when there is no war to be won? Beat up on those not of the army... Go figure we see the news headlines we do. The issues are cellular, not social.(in my wordy opinion:) )

My step-mom always warned of us girls over exerting our bodies and that weird things happen when we don't be gentle to the whole self and not just our ego/image. I'd always thought the woman had "snow white syndrome" but, gosh, you know, I think the broad might have a point.

I wonder what we were all doing the 3 years before our first symptoms. How many(if any) are like me? What do we all look like? What's our average muscle to fat ratio? Was there a recent lose? What was the bulk of the diet?

Your new doc's wonder about early onset diabetes twinkles in my mind a bit... Man, you wanna talk about a bunch of folks suffering long-term human ignorance. Diabetes has got to be a THE head-banger. I mean really! If we aren't failing horribly with synthetic insulin, we are continuing to make and eat things that make more diabetics...*face-palms* When the aliens land, I'm saying I'm a dog and deny knowing any of us... We can share a pack if you like.

They can see which "fighter-cell" it is that is causing the disease but don't know how to change it's behavior without hurting everything too. Can anyone else see exactly what cells are funky your systemic groove?

I see an oncologist for my 'treats'. I'm confused by those being treated by neurology...I thought they were more mechanics and electricians than about bone-marrow and blood proteins.

I did have a situation during the earlier parts of diagnosis while getting a nerve conduction test follow up, Mr. Neurologist was poking around about my treatment direction and offered his department's ideas for a longer remission, blah-blah-blah... Frick'n claim jumper! He had roids to offer above IvIg. At the time I was 30 and asked him what my bones would look like 5 years down his road... He didn't like facing his drug's side-effects, but rather wanted to exploit IvIg's. Busted hips&a hunched back or stroke, gee, which would suck less...?

And then it struck me: Any doctor treating us that does NOT understand the importance of our simple belief in our doctor and course of choices; and EVER undermine this without seriously seeing a threat, but just to, I don't know, schmooze patients from another practice to increase their's is a gigantic P.O.S. pfft, I thought only hookers hijacked clients.

I wonder how often others have been led around this way... See why we should never go to the doctor without our best defender in tow. I'll bet none of them are like this when our mom or best pal are present; just like most predators won't offer candy when auntie is watching... I know they are humans too. I'm just stupid-silly enough to think they'd be different and not have the same trappings any average person would.( like laziness, hubris, ego-mania, psycho-social, brain-farts and fear...) Medical school seems like such a long b!t@h & all. You'd think the experience would build a better human, but it does cost tons and maybe that is what is botching their manners...debts and the realization that they, after all the effort, are now a slave to their loan payments... How bunk.

I've toe'tally derailed your thread... crumb.


#80

I have looked at all aspects of my life, in great detail, and the only constant is T.V.
While I lived in the U.S I became an avid watcher…TV in the bedroom and loft,and living area. Previously, in Ireland, my 19 inch TV lived in a cabinet, and was exposed when a desired program came on. We only had 5 chanels then, in 1987.In U.S there were nearly 90 channels, and I did watch most nights in my bedroom,and fell asleep with it on all night. I still do the same thing now here; watching downstairs, pausing a program,and continuing to watch it upstairs.
Since reading Estabans lenghthy thought provoking information,I am thinking he has hit on something for sure.
I also noticed Americans do watch a lot of T.V…more than we Irish and Brits.
Just my thoughts…so I am going to stop the bedroom T.V watching,and hopefully take it out of the room. My trainer told me about magnetic fields and the emissions from a TV even after it is turned off. I welcome any comments as I am fed up with IVIG and will try anything that might help. Thanks for all your input.regards Happy