my final diagnosis
AnonymousFebruary 19, 2010 at 2:57 am
My final diagnosis
Lately my being ill had started to express itself in so many scary ways with motor disturbances that would drop me in minutes, a frozen neck and extreme pressure in my eyes, ears and even teeth. With psychological disturbances where the world became smaller, I saw synergy and relationship everywhere, and even the delusion of grandeur that I was important enough to be watched by “them”, had made its presence. Over the past months I have run from doctor to doctor first with just my tale. then with a stack of hospital and doctor reports showing the damage assessment of the past, then I made a spread sheet that summed up the reports in an easy to read one page reference sheet. Then I organized by chronology and category, the reports and included it with a personal account of the events around these bouts. I ran around asking for help and received responses that absolutely filled my spirit with resentment I have included each comment by a different doctor.
-“it has occurred to me that underlying anxiety is a contributing factor, however I will give her the benefit of the doubt and treat her anyway”
-“Tara is an enigma”
-“She states that she is no longer on methadone, however she became very defensive when I asked her about her history”
-She came in fearing “her organs were going to fail her” ”I do not know what is wrong but she is being treated for anxiety by her neurologist”
-“perhaps its fibromyalgia”
-“have you looked into fibromyalgia”
-“perhaps no one will figure this out”
-“why don’t you ask one of the 7 neurologists you’ve gone to already”
-“this spread sheet makes you appear neurotic”
-“you should probably seek psychiatric help” -5 years ago said by the doctor who discovered the well circumscribed demyelinating lesion.
-“This has happened before, it doesn’t look like this is going to kill you”
-“perhaps you have medical student’s sickness from going on the internet so much”
It became this Chinese finger trap the more I searched the internet the less believable I became to these doctors so the more they rejected me, the more I turned to the internet.
With feeling this ill and sympathy on short supply, I dove into the depths of obsession and madness not just for a diagnosis to lead to treatment but now for the vindication that would also come with it. The shear terror of these motor disturbances fueled the desperation. Porphyria became my new focus and I prayed for those tests to come back positive just to put closure on this. The first test was ruined by the lab that did not protect the sample from light. I am still waiting for the results of the new batch. In the mean time the gastroenterologist discovered three gastric ulcers, h pylori infection and he also did nutrition panel. I ignored this as an incidental finding. But in the midst of obsession and desperation I became so beat that I, who had previously believed myself to be devoid the fundamental knowledge of god, turned to god and asked the simple favor “Help me not to care anymore”. It was revealed just then that I have onco genes too and I don’t care about that so why care about porphyria genes. It is the catalyst that should concern me. I looked at my labs and saw vitamin D deficiency and the h pylori infection. My primary said that everyone has an H pylori infection. I pointed out the D deficiency at my three month check up with the rheumatologist and he said “so all my patients are d deficient”. I had to look up what exactly vitamin D is needed for to appreciate what this meant. Also I had to look up what functions the gut is needed for.
Ultimately I do not want a diagnosis. Being chronically ill means that a perpetual mechanism has been set forth in your body caused by the damage of a string of systemic failures ensures that one place is repeatedly hit. My most recent MRI shows no evidence of a demylinating lesion ever existing. I just get acute attacks and my body heals and then with no rut to follow, the next attack goes somewhere else. The true genetic peculiarity here is my ability to heal efficiently enough that chronic illness is not perpetuated in one area. Perhaps it has something to do with the extreme longevity in my family. What a paradox to exist in one body.
AnonymousFebruary 19, 2010 at 6:50 am
I am also finding the same range of responses from Drs.
They are just too eager to say its all psychogenic, which is really just a smoke screen for their lack of knowledge.
I am sure that the stress of illness / drs makes whatever we have much worse.
February 19, 2010 at 12:43 pm
Don’t give up, you still have the Mayo results out. You will get some answer somehow. It sounds like you are accepting chronic illness, what ever the dx, acceptance is good and needed to move on. But it does not mean you have to give up trying to figure things out. Take a break, wait for the results and move forward from there. That is kind of where we are, waiting for lab results while watching my son suffer. Surprisingly the cidp does not seem to be the issue even with the wean, but the “other” issues are what is at the forefront. I am so desperate, I am even wondering if it is the taper itself making him sick? Relax if you can, just a little and enjoy your kids. A step back might bring you to a whole new perspective. Mayo has got to have an answer.
AnonymousFebruary 19, 2010 at 8:21 pm
It’s not fun to see docs try not to make distressed faces when reading ‘ones” medical history!
I truly feel for you and your fustrations… First off so many other issues, and then tangents the docs run off on…or not.
When docs ask me about what my mental state is: I always reply–How would YOU feel at this time and all about this? Your body is going on RED ALERT! And you’ve no clue as to what the alert is about – only that something or somethings are not RIGHT!
WAITING for test results is Heck! and worse. It’s awful to say I hope you get SOME diagnosis and not a lot of inconclusives? At the same time…well, you know…
Having a NAME to the primary whatever tho, sure is a comfort. Even if not much can be done.
Hang in there and be fierce and strong to get to the root of it all, IF it can be found!
Hugs and hope always!
AnonymousFebruary 19, 2010 at 10:49 pm
I remember at the clinic the despair on so many faces from doctors saying it was psychological in nature. Many were sent to see psychiatrists that only increased the pressure by family that they were indeed not really ill but pretending.Some had such rare disease that they never got diagnosed (yet) but it was obvious they were ill.
I was told repeatedly I had Fibro (which by the way I think is real).Saw too many women shuttled off with diagnosis of depression.
It seems like patients have to follow certain behavioral guidelines (not crying/being upset) so they’ll be seen as physically ill. If doctors truly believe most patients have imaginary illnesses then why become a physician?
It will be fantastic if diagnosed correctly quickly and treatment started sooner.
Everyone deserves a compassionate doctor who will say “I’m going to find out what disease you have and I won’t stop looking till I do.”
AnonymousFebruary 21, 2010 at 2:23 pm
no you guys arent getting it I dont want a diagnosis because I found the source. vitamin D binding protien the GC gene which expresses human serum albuman and alpha fetaprotien. thats why I have spina bifida, and rotton teeth because its congenital. thats why there is a misstep in the biosythesis of my heme. binding protien. our hla markers indicate our genetic vulnerabilies, mine happens to be in the small intestine h pylori caused errosion and that is where I absorb vitamin D and other nutrients. Once you realize that molecular mimicry is just a theory only then can you throw it out because it makes us think that these things happen in a vaccum and they dont. that stupid theory compartmentalized medicine and made us think that the only thing involved is our immune system and the place it attacks and has nothing to do with the huge system that has to be balenced. thats ok if you dont get it but I just moved furnature yesterday and packed it up onto a truck. I am strong now. think about it what is immunoglobulin, plasma. plasma pherisis is basically phleubotemy. it washes our blood. prednisone, plaquenil all have to do with one systm and the blood. the only thing immune I see going on is hypervigilence and ultimately intolerace. there are metals in the center of porphyrins called metalloporphyrins. what hwppens to metal when it oxydizes it becames toxic. porphyins accumulate in bachteria and oxydize and when rereleased in the system your blood then recycles it but this time its old crusty toxic metal. thats what anitnuclear antibodies really are. when there is dysautonomia caused by metabolic distubances it causes vein stenosis which in turn causes a reflux of this bad neurotoxic blood back to sit too long in only area. see CCSVI to understand this.
AnonymousFebruary 21, 2010 at 7:40 pm
Then, all I can say is:
I hope that You come to peace with this all, and that something will work FOR YOU!
Golly life seems unfair that we get these peculiar ‘cascades’ at times, and yet, what are the odds? Worse what are the odds that they are ever diagnosed?
I DO know that you have gone every single route reasonable and beyond that. But please don’t give up to find any possibility of restoring some if not all aspects of health. That is what I selfishly wish for myself? And I wish it for you too!
Go forth and fight for yourself to be back! It’s a simple yet complicated wish, isn’t it? But I KNOW how long you have been fighting and I am truly hoping that you are strong enuf [even if you don’t think so now?] to get to the roots of the problems! Hugs, heart, hope and fortitude! GOT THAT?
AnonymousMarch 5, 2010 at 12:09 am
You’re brave. I would want a diagnosis! But it sounds like you’ve found what you’re looking for.
With all your body has been through (and is still going through) it might be a good idea to get regular massages. It will reduce your cortisol levels at the very least, so your body won’t be in “fight or flight” mode. If there’s a massage school in your city you can get a student massage and it’ll be inexpensive.
Aloe Vera gel is supposed to be very good for absorption when taken with meds and vitamins. If you’re upping your Vit. D it can’t hurt to try it. It’s kind of weird tasting, but completely safe.
Also, make sure you’re getting your omega-6 and extra vitamin B complex!
take care, marie
AnonymousJune 19, 2010 at 10:38 pm
It’s been a long time since you posted this thread. I have been wondering
about you. How are you doing? Did you ever get a firm diagnosis from Mayo Clinic?
Would you be willing to update us on what is going on in your life?
Thanks so much. I always wish you well! I hope things are better for you.
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