Hi. Just wanted to say I'm so sorry for all that you are going through and you are in my prayers.

We're a terrific bunch of caring people on these forums.

Just wanted to send a hug.

Kris...

Even tho one has to consider some scary scenarios, it helps
to keep in perspective the odds...

The most frequent cause of neuropathies is diabetes.
Then comes drugs (my opinion) and nutrient deficiencies.
Then with your ankles, comes autoimmune disease (Rheumatoid arthritis, lupus, tendonitis, gluten issues, vasculitis, hypothyroidism with entrapment)
Then toxins like heavy metals, paint stripping solvents, formaldehyde, etc.
Paraneoplasia is further down the list. But it needs to be considered, because if it is the cause, catching any cancer at the early stage gives a more positive prognosis.
Hereditary types are also down the list, and poorly understood at this time.

here is a link that explains it:
http://www.aafp.org/afp/980215ap/poncelet.html

You just have to hang in there.

As one who has the hypothyroid issures [now autoimmune], autoimmune neuropathies and have had breast cancer. I can attest that there is NO way the first two are impirically connected to the last one. The docs didn't know to check, even w/a very strong family history of cancers. I suppose that justifying the specialized tests for insurance are also an issue, but I'm not gonna go down that maze for see if there are some should-haves. It's done.
The numbers of folks who have all three issues is small. That the cancer could have precipitated the other issues the odds are minutely smaller indeed. I know only about 4-6 folks who have any combo of these issues on any boards. Only one person clearly had paraneoplastic neuropathy.
Do not worry about it until THE IF AND WHEN of anything happening. IF anything happens, which likely it shouldn't.
That your skin biopsy was negative is GOOD news! That you are getting other specialized testing such as the autonomic ones is well, well above average of investigations by any doctor or doctors. It sure sounds as if your docs are trying hard to get to the root of your problem! That the biopsy was NEG? Well, that's one of many things that's to be checked off the diagnostic list! That test list is usually very long, so keep at it.
So think positively as best you can and keep plugging at it. You might find out that it's something simpler than first thought. I sure hope so!
Hugs and hope always 's - j

Thanks to all of you.

My family is yelling at me to get off the internet because I keep end up crying. I'm doing my best, truly, to keep it together. It's just scary.

Thanks to all of you for the information, the assurrances and the support. It means so much to me, and makes me feel so much less alone.



My neurologist is very thorough. Although she is hard to reach and have appts. with. I don't have another appt. until Sept. I called today to say that after I get the autonomic testing results I will surely have questions. So, could I schedule an appt. for that? The scheduler said Sept. is the best she could do. I then asked that I could have a phone appt. scheduled, so that I don't miss the dr.'s call again. Again, no can do. So, I have to call next week to give her my cell phone number so that I hopefully will not miss the call.

So.. praying for normal results and to not miss the neuro's call.
Kris

Oh My God.

Are doctors so busy that you can't even schedule a phone talk with some of them?? And she's booked until September??

There's a message going on here. We absolutely need more doctors, more specialists and more physician related specialists. We need people to take the phone calls and we need people to follow up and call up people.

I mean, the baby boomers are UP THERE IN AGE, and need more care. Where are all the geratric specialists?

Didn't someone 20 years or so ago say "we need to get more doctors in this field, and in that field??"

Where are all the doctors??

Good Lord.

It's scary reading about this.

Melody

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.

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