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Old 07-09-2008, 04:25 PM #11
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Lightbulb much of this anxiety comes

from "not knowing".... in fact when you do "know" there is still not a good chance for a rapid cure, if any. American medicine is not really up on nutritional support, which may help you.
It cannot cure osteoarthritis or Rheumatoid... it may give some symptomatic relief...but progression is inevitable.

I suspect you have some inflammatory autoimmune thing going on. Sometimes these are self limiting with time. That is they go away. And sometimes they do not go away. Sometimes we are lucky to arrest progression, and that is a victory, albiet a small one.

At 39..you are approaching middle age... everything starts to go
then. Sometimes slowly, sometimes more rapidly.

We keep our cars on average 10 yrs so I am quite familiar with the auto-decline! I sometimes liken it to driving an old car. First your taillights go out, then the rust starts on the running boards, your muffler falls off one day, a sideview mirror falls off, your autowindows stop working, A/c dies... etc.

I myself have atrophied ovaries, thyroid, joints, high blood pressure, etc, in addition to the PN...infact the PN is the least of my worries today. One can minimize damage, but there is NO GOING BACK to what you were, ever.

People react to illness in different ways. I learned early (at around 30) that my life was going to be different from other people. In fact my childhood was a horror, so my pain now is nothing compared to what I grew up with. So the horror was a gift of sorts, a gift to make me appreciate the nicer things I find as an adult.

If you feel overwhelmed with this medical issue, I suggest you see a counselor and learn some relaxation and hopefully some autohypnosis techniques to help you cope. I learned autohypnosis long ago for another reason and it has served me very well now.

If the internet is too much for you, then take a break. Really smart intelligent people, can work themselves into a tissy sometimes. I see my son do that...he emails me with intensity still when he runs into a problem...he is 27.

Take care.
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Last edited by mrsD; 07-09-2008 at 05:09 PM.
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Old 07-09-2008, 05:57 PM #12
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At this point, in reality, I don't know anything. I don't know that I won't be cured. I don't know that I have an inflammatory autoimmune thing going on. And I do not know, at this point, whether or not I will "go back" to having healthy ankles or not. I just don't know anything. I have zero diagnosis. So I have zero reason to believe I will not be cured 100%. And it's depressing as hell to think otherwise.

I do see a counselor and she has been helpful to me, as these symptoms and the ensuing doctor visits and tests and lack of "knowing" have been going on since last November. Up until then I was someone who exercised everyday, chased my kids into the twighlight and kept up with the house and all its demands. That has been taken away from me. Until one month ago I believed I would have ankle surgery, mend and continue on my way. No, with no quick fix in sight, this has been quite a paradigm shift for me.

I do know self-hypnosis -- I delivered three babies without drugs that way. It is a good suggestion.

Considering the myriad devastating diagnoses that I may be facing, I knew when I posted the negative skin biopsy result that some would respond with something other than "great news!"

Knowing what questions to ask my doctors and what tests to ask for or expect, is very helpful. The suggestion that I have something "inflammatory autoimmune" .... I don't know. What illnesses does this refer to? How does this relate to me my ankles? What are the test for such things??

I give thanks for each "negative" test result I receive. I maintain hope and faith that I will recover completely, 100%. Maybe that makes me niave to some. "I cried out to God and he healed me." I'm waiting on Him.

Kris
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Old 07-09-2008, 06:29 PM #13
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Lightbulb after the birth of my son

back when I was 34, both of my knees swelled up and I could not even get out of a chair. I had a 4.5 lb preemie to take care of and an upstairs to deal with. Our home is on a hill besides, and we have to climb those stairs to even get in.

I had a C-section to recover from too. The only explanation at the time for me was that I had RA before and this was a flare following pregnancy. Or that the hydralazine I had to take for blood pressure caused a pseudo Lupus. But my blood work had been done before my pregnancy because I was already having arthritis issues, just nothing really swollen red and hot (inflamed) and the tests were negative. In those days, Motrin was very new, just came out. So that is what I was given. Along with a boatload of other blood pressure drugs. It took over 6mos for my knees to get better, but they have never been the same. I had to put in a small nursery on the main floor, and I was mostly housebound for the first 3 months. But luckily for me, the inflammatory attack did subside, and I have negative RA factor and no ANA elevations.

My bowling and tennis days ended then. But eventually I did return to work when my son was 5 yrs. old. I have had knee issues ever since, but I have learned to live with them. So far I have avoided a replacement.

My son was born blind, so we had to deal with that too. So I just focused on him, and did the best I could. My husband has been very helpful, and he did most of the grocery shopping in those days. He even drove us to the doctor (my son had many visits early on being a preemie) for a while.

This season my husband found me a ramp...to help me in and out of our pontoon boat, since I cannot step up higher than about 12inches and sometimes I need to where we are upNorth. Last year our water levels dropped suddenly in August and the dock was too high for me to get up to.
I have been lucky in not needing my cane lately, but sometimes I do have bad times and need it. I just am grateful for when I don't.

Some medical things that happen to people are mysteries.
Sometimes there are no answers, only labels.
In your case you have a negative biopsy so far, which is a good sign. (not a guarantee--but still good).
Many times things are self limiting. Your body can heal itself, and it does. This may happen for you or not. Only time will tell.

adding... I would think you would have had the autoimmune testing done by now...typically rheumatologists do this. But some have false positives, and false negatives...The RA factor is one of those with a 70% accuracy rate. While you wait for the neuro... why not see if you can get a rheumatology consult?
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Old 07-09-2008, 09:15 PM #14
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Thank you for sharing your back ground, Mrs. D. I'm sorry that your knees never recovered enough for you to bowl, and that you were not able to fully enjoy your son's infancy. Maybe a knee replacement would be a good thing, given the absence of RA?

I know I probably sound to you like a whiner or someone stuck in self-pity, and to some degree I am. I want my way! I want to get back to my old self! And, oh yeah, I'm scared silly that it'll get WAY worse than what it is now!

I placed a $100 order for vitamins the other evening based largely on your recommendations.

I am wrapping my brain around the fact that this may be it: medicate, tolerate. Eat well, take vitamins and pray.

My rheum. appt. is August 8. My rheumatoid factor screen came back negative but not sure what value there is in that, or what ANA is. Now that I know that he will do the autoimmune stuff, I'll start calling for a cancelation spot. Something for me to do besides feeling sorry for myself.

Thanks again.
Happy vacation,
Kris
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Old 07-10-2008, 05:52 AM #15
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Default When the www.lizajane.org site goes back up--

--I understand there've been some problems with the server there over the last week or so--you should peruse it closely; it is the most comprehensive databse of potential tests for neurological symptoms yet compiled.

It is designed not only to suggest tests to uncover conditions behind both central and peripheral nervous problems, but to track results over time in order to discern patterns.

I empathize with your desire to have your old life back--most of us have been through that--and its possible you may get it. but neurolgical symptoms have a tendency to be chronic, with adjustments necessary, and most of us can also vouch for the difficulty in getting diagnoses, as so many neurolgical symtpoms can be caused by multiple factors, leading to long and expensive investigations.

Te lizajane charts can also help you to suggest tests to physicians--its unfortunate, but many physicians get stuck in their own little testing/diagnostic patterns, and are not that good at thinking outside the box, needing to be (gently) prodded. (It's no stretch here to say that most of us have greater expertise in our conditoins than most doctors do--we're specifically motivated to keep up with the research and literature.)
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Old 07-10-2008, 07:53 AM #16
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Lightbulb there is a theory in current biology

that proposes that many if not ALL disease we encounter is microbial. That is, we get infected with some organism that lives in the environment and it attacks certain areas and becomes a "disease".

Examples are:
Rheumatoid arthritis (begins with an infection, then becomes a self sustaining autoimmune response)
Type I diabetes (a viral illness trigger is often the beginning for this)
mental illness (some schizophrenia is suggested for this-viral)
Crohn's disease
Ulcerative colitis
and many more...

Here is an example--for mycoplasma:
http://www.rense.com/general3/chemill.htm
(I am not advocating long term antibiotics for you, Kris, just showing this as an example).

here is an example for mental illness:
http://www.in-my-opinion.org/in-my-o...11a6b60c94612d

When our bodies react to an infection, many inflammatory compounds are made, and some then attack areas of the body that resemble parts of the invader. A good example of this is PANDAs which is an inflammation of the brain caused by Strep and results in tics and Tourette's syndrome.

A person's immune system, and genetic potential for over-reacting, contribute to the final effect--whatever it may be.

There have even been studies to show obesity has an immune response to a specific virus, which may cause it.
http://archives.cnn.com/2000/HEALTH/07/28/fat.virus.ap/

As the genetics research progresses, we may find more answers to many puzzling and treatment resistant conditions.

We are a walking target every day now...and I'll say, that just the food borne pathogens we are encountering now, they alone are pretty scary to me. I seem to be having more GI problems than ever before since the beginning of the year!

And most often, the research information does not get to the daily medical providers, who evaluate patients based on what they have learned in school, often many years ago.

Ever since my son had Mono-- he has been plagued with bouts of fatigue and other obscure symptoms.
Ever since MY mono--- decades ago, I have had swollen glands in my neck...they never go away! So I think we both have a chronic Epstein Barr situation..that activates, and goes to sleep. It may be that we are all infected with "something" that plagues us!

We had a poster here discussing breast implants...and she described what they look like when removed! YUK YUK... filled with mold and other nasties!

Some people have be poisoned by mold in their own homes.

So the list of potential causes for human misery grows.
There are so many of these!
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