Skin biopsy results
 

So today my neurologist called. Unfortunately, I missed the call but my mom took it. I would have had some questions for her, but I just finished my autonomic testing this afternoon (the machine broke 3/4 of the way through last week), so maybe I'll have another chance to talk to the neurologist soon.


Anyway, the skin biopsy came back normal. I have no idea what this means. I'm glad, of course. Normal's good. It just left me with questions in my mind about "what does this mean?"

I guess I'll wait for the autonomic testing and take it from there.

My PCP ran a heavy metal panel yesterday as well as a lyme test. The lyme test I had before was just a "screen" he said, so I was glad I asked.

Best to you all,
Kris

Can you get a copy of the skin biopsy test results?
 

Reason I ask is that while getting a "positive" finding of small-fiber damage is pretty much the gold standard for confirming that kind of neuropathy, a "normal" test may not eliminate the possibility (which is why I'm glad you're also having autonomic testing done).

There may still be some damage to the small fibers, but it may be patchy, or it may not be most evident in the areas from which samples were taken. Then, too, the McArthur protocols that the skin samples are generally judged by don't consider a small-fiber neuropathy "definite" unless the intraepidermal nerve fiber density figures are below the 5th or above the 95th percentile. Of course, the pathologist is also supposed to look at the condition of the nerves as well as their density--abnormally swollen or branched fibers are generally a sign of an ongoing process.

If you can get the report, I'm pretty confident I and others can interpret it. (I've had three skin biopsies, those reports, and also copies of most of the papers about the procedure.)

It means something else may be causing your symptoms.

There is a very negative thing to consider...paraneoplasia.
I bring it up only because I am leaving and cannot follow you.
I ran into a woman I know this weekend who had lung cancer...and she is still in remission--a rare thing. But she told me this weekend that she was just diagnosed with stage III ovarian cancer, and had NO symptoms.

Sometimes people with a hidden cancer develop neuropathies before the cancer gets big enough to cause overt symptoms.

At your age this is not as common as in an older person, but younger people are showing up with cancers now.
The most common types are ovarian and lung cancers.

I am sorry to have to bring this up...but it should be considered.

Thank you for the info
 

I am greatful for your insight, Mrs. D.

I'm back to being 100% scared. Who knew that sore ankles could turn into such a nightmare.

Praying to be cured, and staying positive, (through tears, ugh)

Kris

Kris...
 

I know this process is very trying.:(

It is very frustrating and many of the considerations we must take a look at are not something we want to have, for sure! That is the process of elimination.

As women, we all fear ovarian cancer (and other hidden cancers), even if we have no signs of neuropathy. This fear is "normal." Albeit, not any fun!:hug:

Hang in here with us and we all will do our best to help you through this difficult time.:grouphug:

Also, if you have any "spiritual inclinations," some people often find this a helpful resource during such chronically trying times. (There are additional forums here you might find helpful to you as you go through testing and diagnosis?)

You might find some assistance in also identifyig any activities that might help you during time of increased stress.:winky:

A big, warm, gentle hug for you.:hug:

Try to take this one step at a time, if you can.:hug:

We are all right here for you!:grouphug:

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.

:hug:

it is hard... not knowing...
 

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.

Please do not panic!
 

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 :hug:'s - j

Thank you
 

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.

:grouphug:

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. :D
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

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.

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

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?

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

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.)

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!