Greetings all.
My on-line name is Okori Tenko. I pose on IMVU as a ‘kitsune’, in general, just to escape and have fun, or try to. I was also a US Army soldier. Perhapse this is not the best of openings, but it’s honest. I’d rather be seen as a whole and hail creature than the broken man I am. So, on-line ,kitsune are my hobbie.
I really do feel for all of you out there that have been suffering from DD. I suffer from it as well. Been suffering with it for eight years and it’s degenrating me rapidly. I’d go into my own story in great detail, but I’ll just say that it’s been bad. Still, I’ll give you some back ground on me so that you can judge for yourself if I am reliable. As is, I know it’s hard to trust anyone and anything with having to be in the middle of all of the mess. If anyone knows of a good doctor out in Houston, I’m all ears.
I had joined the National Guard in Utah, Going through Basic Training in Georgia and Maryland. While in inprocessing, MEPS, they told me I had nothing wrong with me. As I went through the medical lines in Basic, I got three shots, two being cold and flu and one penicillin shot. Along with that, I was introduced to a Polio Ingestable Serum (effectionally called PIS by the lower enlisted as a joke).
I’ve had everything but the Polio sip prior to my induction in the military. Afterwards, I started formulating these… bumps. I had no answer to why, save for the medics telling me that it was simple lipomatosis, that it shouldn’t hurt. Still, it did, and progressed to worse and worse stages, with me having near catatonic fits of histeria.
Noone could tell me what was happening, until I met with someone outside the military whom told me about his wife, whom had the same symptoms and told me to look up Adiposis Dolorosa.
Since then, it’s been a battle both in and out of the military trying to convince them that part of the problem has been them require that I injest the Polio Serum which has, to my opinion and a few doctors, been part of the reason that these dormant genetics for this condition to become active.
It’s been degenerating me a little at a time, causing nerve damages and minor, moderate and major muscular control loss. Severe muscle and nerve spasms in wide variety, andxiety, a sense of loss, depression, and even a few times, a sensation that I’m dying slowly, being consumed from within, which had put me on the wrong end of paperwork from the get-go, in that a majority thought I was suicidal.
To an extent, I’d agree with and argue against being suicidal, that it was just the sensation of dying that was getting to me. I ended up having many arguements from being forgetfull, or not paying attention, but still trying my best to succeed. As it ended up, I was Honorably discharged twice, one for completing term of service with no problems, and once for general medical conditions that, to the Army, did not add up to disability, although to this day, I still can’t walk more than 50 feet without the use of a cane. I may not have been a shinning example of a soldier, but I was a good soldier, if nothing else.
I still don’t know what to do about any of this, and I’m getting little to no help what so ever. So, for the time being, I’m at a loss there, unless someone has a suggestion that may aid me. I’d be eternally gratefull for any advice.
Fighting the military to get me correctly diagnosed with DD has taken the wind out of me and left me forelorn and lonely.
As to the facts of my medical history, I cannot indulge too far into anything specific at this time. Still, I’d like to share with you my own personal findings on DD, and perhapse shed some light on some of the effects, side effects and probably causes for DD. Don’t take it to heart, but it’s the best of all the answers I can come up with. It’s the answer I have when no one else has an answer.
First of which, is the start of DD.
Noone seems to know whether it’s from an infection, or whether it’s genetic, but all seem to know it effects thier nerves. That there is a constant sickness that follows with variying side effects seems to be taking the wind out of everyone’s gusto, and left many with a wonder at what is going on and what can be done.
Granted, a little of my information is a little over two years old, I’ve gotten the farthest with my theoties as I can come. If any of you can find a pattern otherwise as to what else might be thrown in with this, it’s the best schematic of DD that I can possibly come up with. I hope this serves you well.
Dercum’s Disease seems to be lipomas, but has far more reaching effects, as all the research seems to indicate. Some seem to have infections, some do not. In the case of it’s formulation. I propose a three fold effect, a triangle of very specific requirements that have to be ‘met’ before the scist can form. The likelihood of increased numbers of the nodules increases with two major points that cannot be changed.
First: Genetics. We all have to be carriers with a likelihood of activation. There is many people with the genetic requirements for Dercums, but for the most part, it’s recesive, and prone to skipping generations, ergo, grand parent to grandchild. The gene itself is nothing to worry about, though, it can be passed on, the likelyhood of its reactivation is submissive, and can seem to skip generations at a time, to strike a number of patients generations at a time. One, two, skip a few. Nine ten. Let’s do it again. Get the gist? Good.
So, Let’s say Jan or John Doe has the requirements. It’s there in thier living cells. Normally, I’d say either age or timing has something to do with it. It’s not anything we can controll, but then again, I looked at something else. On it’s own, the genes will just sit there like the proverbial lump on a log, please excuse, pun not intended. But something has to activate it. Timing and age are not the problem. It’s a genetic mutation. There has to be a catalist.
Ergo: An infection. Granted, this happens all the time. The imune system goes down just after menopause, and in males, estrogen take a sharp decline to keep us masculine. The immune system slows down. Therin lies the key. Part of this is due to an infection of one kind or another. An infection, no matter the type infects cells as part of it’s procreation, causing vast and cataclysmic changes in the cell’s DNA. But, it takes two catalysts, otherwise, there would be no effect, other than the constant barage of infected cells, which our immune systems will constantly fend of as a natural part of our body’s processes.
So, you now have the set up for a perfect shot of a mutated cell, on it’s way to becoming a host for a new line of virus or bacteria. What now?
Location, Location, Location.:
Since DD effects nerves, then there has to be a certain proximity limmit to the nerves that the ‘infected cell’ has to be around, and the nerve coatings have to be thin. Like a peanut next to a high power electrical line. Obviously, if enough power goes through the line, then somethings going to fry. While there’s not much electricity in the body, the process is more chemical, and has a vast more potential. Now dip the peanut and power line in a vat of salt water. Oh, don’t forget to strip parts of the wire’s protective coating off.
All of the extras are absorbed by our fat cells, whether it’s waist or store fore later use, as is generally the case with fat cells. If the biochemical discharge to move a muscle is blasted nerve to nerve, then the likelihood of most people’s nerves leaking that fluid out into thier bodies is rather limited, figuring for a thicker protective membrane covering thier nerves.
But for us, it’s possible that the proverbial peanut just gets fried while it’s being mutated on a genetic level. A chemical fusion happens, and the procreation in massive amounts from the infection fuses with the DNA strip, but instead of effectively killing the original host infection, it’s fused now, ergo, creating something that abosrbs nutirents and rapidly reproducing itself and mass quantities. Ergo, you now have roasted peanuts.
The end result? We get a nudule. DD is now in full swing.
Were it not for this possible and highly plausible effect, then anything else would have given us more than the already large quantities of these things that we already have. It’s lucky for us that the criteria has such a large and specific set of requirements, to the best of my understanding, as is possible.
This sets off a number of things and answers a few questions at once:
-
Could this be the cause? I think so, in my own opinion. Everyone is looking for specifics. I took another approach. What it it’s not specific, and went with a more exacting cumulative effect.
-
Is it Genetic? Yes, and then No.
It’s based for us in our genetics to have it, but we also have to have the genes for weak nerve coverings, or there would be a million others with it, and there would be answers now. As is, we don’t have many answers.
- Is it any specific disease?
Answer: No first, and then Yes.
It’s why no one, not any doctor can nail down one specific disease, but they haven’t looked at the possibility that it’s one TYPE of thing inherant process in a multitude of infections. The process of thier cellular reproductive sequencing and the timing that it occurs.
The infection probably needs to be in a specific state of breaking down, still able to function and still close enough to a nerve.
- So, if it’s a combination effect, then is there combinations of medications that can work to seize the forward progression?
Not currently. Even hormone therapy and gene theropy are not currently working. It doesn’t correct the cause, but some of it can stall the effects and put it in a stasis. In effect, paralysing the effects with hormones. Gene theropy is still in it’s baby phase. So is Hormone therapy. Medication can still only limmits things. Drugs like Amytriptolin (sp?) can only stop up most of the holes in the nerves, even in the ones that are trapped by and in the nodules that are forming. That’s part of what amytriptoline does. Blocks nerve sensations, changes them. Ergo, a little less pain.
To my own opinion, any amount of less pain is better than more.
- Is it fat cells only?
No. Unfortunately it’s not limmited to fat cells, according to my own research, but this does not mean that every cell is scuceptable. Remember location, location, location? Think about it squarely. These things need high amounts of nutrients to keep growing, or our body would naturally get rid of them. Ergo, places like the large and small intestines, heart and lungs, depending on severity, can be a target for DD as well. Anywhere high amounts of nutrient rich sources are abundant. Obviously, the skin and fat layers are targets.
- So, why are so many other things effected?
Take for instance that strange pain mostly associated with arthritis and Carple Tunnel. All those areas require cartliage to work. What are these things made of? Partially cartilage collegens. Ergo, DD is eating the cartilage.
- What about some of the other symptoms?
O.k. I can’t get into everything, but mainstream neurology seems to be the primary target. All nerves seem to be targeted. Even in me, it’s going after my spinal collumn, determined to paralise me. Still, I think only the smaller nerves are truely in danger. The largest of nerves don’t seem to be effected, save by chain reaction. Basically, the nodules are not forming say, in your spinal collumn itself, but is forming around places where the nerves are comming out. This means that your spinal column itself is safe, and though your bones have nerves, the bone cells themselves are too hard for these things to form in the bones, but say you have the genetics for weak or hollow bones, it might be possible. So, don’t take that as trueth of the matter. Still, it would explain the bone pain in some of the other kinds of DD. I can only speculate.
As for the mind effects, if your body was paying a vast amount of attention to the rest of your nerves, wouldn’t you be forgetting things as well? Even if you don’t notice it, you might be paying more attention subconciouly to your nerves than what’s normal, which takes away concious activities like… paying attention. Not to say that it’s exactly what it is, but at least there’s something, and no, it’s not an excuse, but it is a reason.
My only suggestion would be to talk to your doctor about supliments to sharpen your attention, like ginkoba (sp?) seemed to work for me for a while. I… don’t like the thought of Ridalin. So, Me personally, I won’t suggest it, but if your doc says yes, and you want to, I say go for it.
All of the other things, like the aches, pains, burning and freezing sensations, numbness and deadpanned muscles? Pinch a water hose and see if the water comes out. Not much or any water at all? PRetty much the same thing happening with your nerves when the scist hits against it. Remember, the nerve is biochemical, no matter how much energy we have in our bodies. It’s bio-chemical mechanical first.
All of the effects that are forming as side lines can be and probably are forming for a reason that can be directly attributed to DD. These nodules are acting like supposedly begnin scists. I say, just because they are not making malicious chemicals in our systems doesn’t mean that they are not malicious. These things are absorbing things we need from our bodies at what can be an alarming rate of speed, effectively decreasing our body’s natural processes. To me, that’s malicious. I don’t care what a doctor says, the masses are there because they are taking things our body needs. In effects, stealing from me.
Perhaps burglary is not a crime comparable to murder, which is what some cancers do, but both crimes are still against the laws, both stated as malicious acts. Tell that to the next doctor who says these things are not supposed to hurt and watch the reaction. Garunteed, he’ll be a little pissed that you got him or her, but I’ll bet the point still gets across.
All in all, this is the best that I could think of. I hope that it helps all of you, or at least gives a few possible answers, gives some fight back to you, makes you willing to go that extra mile.
I’ve had hope that would be willing to melt the steel in my way. Now I need a blow torch. Pass the atcetaline, please?
Please take what you can out of this with a grain of salt and a grain of sugar. I might be wrong about all of this, but since noone else really has an answer, it’s the only one I have. If you can tell me any part of this is wrong, by all meanse, please do correct me. It’s vague, but then again, I’m not a doctor of any kind.
My whole career was about being a soldier. I might have been a mechanic, but I still fight. This is now just a different war. You have me here to cover your back and help you out for as much as you can lean on me. One bad leg or not, I’m still willing to fight. That’s what a soldier does. That’s what a soldier will do. That’s my job. Hooah?
Contact me anytime if you’d like. I’m not on often right now, but I’ll do my best. Ask any questions, except for who am I? I’m still not comfortable answering that, yet. If anything, call me another unknown soldier. I’d rather be remembered for what I do, not what my name is.
~ Long Journies require many tails in the end.~
A Kitsune’s Pun of Truth
Ossasuka Okori Tenko
