[KrisC]

Hello,
My name is Kris. I am a 38 year old mom of three kids, ages 8, 6 and 3. Until last fall, I was active and healthy, exercising every morning, chasing my kids, cleaning my house, and on and on.

Then last fall my inner ankle started hurting. Burning and aching. I spent six months going to orthopedic doctors and having imaging done. In april, my other ankle started aching. In the last few weeks it also progressed to burning, and I'm having some burning off and on in my arm. Some days my ankles feel decent and somedays they burn. Today they're burning.
'
I spent the last week thinking I had RSD/CRPS. I was just seen by a neurologist at MGH yesterday who said she doesn't think it's RSD. She said it's small fiber predominant peripheral polyneuropathy. She's ordered a skin biopsy and autonomic testing, which will happen in the next two weeks. I had started neurontin and she increased the dose. It doesn't seem to help yet.

I am so sad. I thought I would have surgery and be fixed and now I realize this is it: pain. The neuro and my husband have ordered me to call my primary care for an antidepressant. I just did but I feel like nothing will help. And I never had to take drugs before. Now I will for the rest of my life.

My neuro told me to take only my multivitamin and that's it. Usually I take flax and omega three and calcium and vitamin D. She said just the multi. Everything I read to take is vitamins and I wish I could try some but for now she said no. I want to try everything, even the rebuilder. I want to heal!

Anyway, I just wanted to introduce myself. Sorry I am so doom and gloom. I am having a hard time adjusting, and am still concerned about RSD.

Best,
Kris

[mrsD]

your doctor sure doesn't know much about healing....only
identifying.

I'd suggest you get a Vit D level done (3 kids!)
and B12. Even Dr. Latov's book...has a section on nutrition! (it is not spectacular and has a glaring error, but it is included in his book:
http://www.demosmedpub.com/prod.aspx...=9781932603590

Women lose enormous amounts of Omega-3s to the fetus, for the development of the baby's brain and nervous system.
In fact there is a supplement now for pregnant and post partum women called Expecta.
http://www.expectalipil.com/

You have had 3 children and this has been a nutritionally
draining experience.

I would continue with the EFAs...and demand the serum tests for Vit D and B12. If your doctor refuses, I'd get another.

Also after having children, autoimmune things start for some
women. You don't mention having that tested either.

PN doesn't typically start in an ankle. It starts as pain and/or numbness in the feet and hands.

There are other things to consider as well. Rheumatoid arthritis, gout, thyroid disease (hypo typically follows pregnancies).

It is hard to have 3 little kids, pregnancies and all those demands, and not think nutrition/deficiency.

Look back and see if you have had Cipro or Levaquin prior to your ankle pain. These drugs cause PN, and also affect tendons, and in some cases MONTHS after using the drug you can have a tendon rupture. Ankles and knees are the most frequent sites for these tendon issues.

Welcome here... now is the time for homework. When you read up a bit, you will be able to ask for the tests you need and not be put off by a busy/arrogant doctor.
And you can request Lidoderm patches for pain... they work much better than Neurontin.

BTW Essential fatty acids are not vitamins...they are ESSENTIAL foods that your body needs daily
to repair itself. If you are not eating foods high in them you need to supplement them. Pregnancy depletes them. You do not need a doctor's permission to eat or take them. YOU are in charge of your healing. After 3 kids I can't conceive of a doctor telling a woman not to take calcium and Vit D! That is so antiquated!

[Silverlady]

What is he thinking! Was there a specific reason he wants you not to take anything? Is he still testing?

I'm thinking ankles. Having just gone thru a severe stress fracture in my ankle and finally getting it healed, I'd also recommend a podiatrist. Maybe one who familiar with autoimmune diseases. Have you had an autoimmune panel done?

I know you are depressed, but now is the time to arm yourself with reading on the subjects. The stickies at the top to the forum is the best place to start. The stickies are full of info from people who have already been there and done that. I totally agree with Mrs. D unless there is a specific reason he asked you to stop the vitamins, etc.

Billye

[shiney sue]

Hi, and sorry to here about what your going through..I thing it's odd about
That dr. is doing..Sorry to here your going throug this,and this must be hard
with the children,just love them,,gentle play with them that's all they want,
Hugs to all Sue

[KrisC]

Well, she is still doing testing. I have a skin biopsy next week and the autonomic testing the week after that. I'm still taking the multi and the omega and flax. I'm concerned about not taking calcium and vit D, so I ask about that. Maybe she's concerned about toxicity?

My family and friends are all like wow you must be so relieved. They have no idea. I don't know what I'm dealing with yet. I am in pain. Yesterday my inner ankles burned all day, and my forearm, although less so. I am looking at medication for the rest of my life, medicine that probably won't even take the pain away.

I'm a researcher/writer. I've been doing a lot of research and it's just been more upseting. No hope for cure. How bad of a condition do I really have? Real Age.com, Dr. Weil, they say just meds. Even my Nutritional Healing book which has everything, NOTHING for neuropathy. It's like I feel like I'm screwed.

I'm sorry to whine to you all. Really, I am. Thanks for listening. I'm not usually a whiner.

[KrisC]

PS Mrs D.
I did not take cipro or that other drug. But I'll double check with my PCP.

I've spent the last 8 months having my ankle imaged, MRI, etc. My tendons are all in tact.

Thanks,
Kris

[mrsD]

Originally Posted by KrisC

I'm a researcher/writer. I've been doing a lot of research and it's just been more upseting. No hope for cure. How bad of a condition do I really have? Real Age.com, Dr. Weil, they say just meds. Even my Nutritional Healing book which has everything, NOTHING for neuropathy. It's like I feel like I'm screwed.

I'm sorry to whine to you all. Really, I am. Thanks for listening. I'm not usually a whiner.

This is a good thing....that you are a researcher and have experience looking for answers.

Those who do the homework, (the stuff ignored by the doctors) are the ones who often see the most improvements.

There are several parts to PN. Identifying it (typically what the doctors do), and figuring out what is causing it (some doctors will do this), getting symptom relief, and hopefully healing (whether this is IVIG or nutrient support to encourage nerve healing.)

It would be helpful if you can recall what happened immediately before your first symptoms appeared.
Did you have a viral illness? Come back from a trip?
Overdo exercise? Have a vaccine?

And don't forget to request a heavy metal panel.
Arsenic specifically can be in water supplies or inhaled from burning pressure treated wood. A woman in my area got arsenic poisoning from playing softball on a contaminated playground! Lead, mercury, and cadmium are also culprits.
Hobbies and also stripping or refinishing furniture may cause PN.

[KrisC]

Thanks, I will try to remember. I was feeling awesome. I was exercising daily but didn't think I was overdoing it. I had started taking daily two mile walks about 7 months before, and about 2 months before had started getting up early to walk or do aerobics. They were light workouts though for the most part. I'll request my records from my PCP. I'll also see about whether they've checked me all out for diabetes.

I'm a little worried about these tests. I'm worried that what they find will be even worse than what I'm now experiencing. I'm turning my cares to God. Little worries keep creeping in. One day at a time, one day at a time, one day at a time....

[mrsD]

when I was about 30 yrs old.

It is not a big deal for me now. I have some discomfort mostly at night, but it is very minor compared to what it WAS...which was terrible. Mine was due to hypothyroidism that was not
diagnosed properly. AFter getting thyroid replacement over 15yrs later, my pain was mostly resolved within a year.

I still have some burning occasionally, and arthritis issues, but they are minor now.

There is a thread in the stickies about improvements.
http://neurotalk.psychcentral.com/thread43699.html

The peripheral nervous system does regenerate with time.
With continued damage from continued exposure to the agent causing it--- or failure to treat autoimmune issues, or discovery of a genetic hereditary cause...these are the more negative scenarios.

[dahlek]

Tho hypo-thyroid isn't my main issue these days [I've others], I did start to have hypo thyroid issues about at your age +/- a year or four? I was lucky with my GP at the time who did a FULL thyroid panel on me and was quickly put on synthroid...It then took a few years to tinker the dosages to just rite.
But if only the basic thyroid & T-3, T-4 are done, not a whole lot would show up. To make it easiest on yourself? Be sure, if you get the test done, to FAST and have it done early in the morning! Otherwise, like other basic tests, such as simple blood sugar tests, the #'s will be skewed a little to a lot bit.
I'd really hate to have you going from specialist to specialist tho? A really good exam of your ankles does appear to have been done and no visible 'structural damage' seems to be present, Consider that A GOOD thing? Visit this web site [click on the blue part] to learn about what the docs are doing and why: http://www.neuroexam.com/content.php?p=2
Having a CLUE as to what they are doing is half the battle in my book>
I understand the anxiety. I also understand as do all here that the PAIN and fear it all creates is something most folks [unless they experience it] DO NOT GET! It's like cancer? Since I've that too, it's surprising how many cancer folks ask ME about the neuropathy stuff! Mainly because their docs don't do anything other than say 'live with it'. We don't have to. BTW? My cancer came long after my PN!
You are going thru the beginnings, it sounds, of a good diagnostic work up. Don't worry about it all until most stuff is eliminated. The process is one of ELIMINATION.
So hang in there and keep getting those tests done! Knock things off those lists! Have faith, and maybe it IS something simpler than immune issues or those other horrid thoughts you've been having. Save them for later! Work on diagnosis, living right and hugging your kids and your hubby! Every blessing in this world is likely right there to hug! Think positive things for now and get stuff done as best you can! Special thoughts and good ones for now - j