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