Needing expert advice on strange PN! Very long post!

[cope]

I am really glad I found this forum. I am really struggling with what to demand as far as testing because I don't know what is wrong with me and I am being dismissed.

I am a 29 year old American female living abroad in Denmark. I have been to 3 neurologists here. My questions for you all include:
1. Do my symptoms ring a bell?
2. What tests should I demand?
3. What supplements should I take?

Brief (as possible) history:
Sep 2008: 30 min of intense formication on both feet and ankles at sister's wedding. I didn't know this was neurological at the time and thought there had been ants I didn't see. No further symptoms.
June 2010: found fingernail sized numb patch at top of Left leg next to groin simultaneous with 2 weeks of top of both feet tingles (spot still numb)
Sep 20, 2010: Right big toe underneath numb. Lasted a few hours till I walked on it and got feeling back, sat down and intermittent numbness till I went to sleep. Next day mostly resolved. Since then I have had continuous problems (a little over two months):
--twitches and jerks all over, worse at night
--fasiculations in both feet below ankles after exercise
--extremities falling asleep for too long but I can shake them back
--sharp pains anywhere but mostly feet, sometimes hands
--after jogging sharp pain in toes even "live wire" shock in right big toe and pain in knees the day after, so now I don't run
--have seen my lower abdomen twitching/jumping
--ringing in left ear
--I got a pain in my right rib twice that was very transient and hard to breathe but very brief
--"coolness" on top of back after walking and zits all over shoulders (I have always had clear skin)
--full body weakness after yoga (I start shaking from muscle fatigue I think and this is happening now just in general)
--now: both feet tingle nearly all the time and seems to be headed towards painful feet

Like I said I have been to many neuros. The first was with the numb patch and I was told "we are not perfect you know" and no tests ordered. The second after the toe went numb and after a normal clinical evaluation I was told to see a psychiatrist with no tests ordered. The recent third finally ordered an extensive blood test and MRI of brain and spine--all clear so I was told to see a psychiatrist and that no further tests will be ordered.

I realize that I have to find a new neurologist and ask for nerve conduction studies and possibly a skin biopsy since they have all completely neglected to test my PN. Are there any other tests I should have?

I am taking omega 3 and regular supplements. In 2004 I was anemic (score of 6) but now I am ok with a 24 (I was vegetarian at the time and not knowledgeable about supplementation). There is no history of autoimmune or neuro disease in my family. I don't drink, smoke, or take any meds and I exercise and eat very well.

I noticed that my WBC count from July to October has gone down by a little more than one point and is now one point away from being below the minimum--this could be a clue?

You can throw your guesses my way as to what this is, it can't scare me after thinking I had MS, a tumor, etc. I know that CIDP can present with sensory problems and motor after 2 or 3 years. I really appreciate any advice you may have, I am quite distraught at watching my situation progressively worsen while being told I am a nut case! It is really unreasonable how I have been treated and I can sympathize with a lot of you that have similarly had to defend your neurological case!

[mrsD]

Welcome to NeuroTalk.

I am going to ask a female question.... how are your periods?
The reason is that with the acne, you may have a hormone imbalance called PCOS or even Cushing's developing.
PCOS and Cushings have elevated androgen levels and testosterone, and can cause acne in adult women, weak muscles, and poor glucose regulation. You can have blood tests for both. In the beginning, when the symptoms are vague it is hard to pin point either condition. If you can find a female OB/GYN it may help.

Poor glucose regulation (lows and highs) can lead to nerves sending odd signals and strange feelings.

Acne on the shoulders is not common in women...this is a male thing mostly.

This is my first impression. Also, if you were vegetarian for a while, you may be low in B12. So please read my B12 thread here:
http://neurotalk.psychcentral.com/thread85103.html

We have alot of information here on the stickies where the B12 thread is, and in the Subforum linked above this one. People with PN problems just have to face the fact that homework is necessary to learn about options, causes, and testing, and treatments. So feel free to look around! ;)

[Marlene]

Did you ever find out the reason for the anemia? I would not worry about the changes in WBC unless you see a downward trend. There are many different types white blood cells that make up the total WBC so you can learn more by looking at the differential count where each type of white blood cell is counted. Blood counts fluctuate all the time that's why you need to look at trends and also watch the platelets and Red cells/HGB/HCT. Infections, viruses, etc can and will effect white count.

I also echo Mrs D's comment on the B12 as well as other nutrients to look at.
B12, folate, B6, iron, zinc and copper are all needed for good blood production as well as nerve health.

[cope]

Thanks so much for your replies.

mrsD I looked up PCOS and Cushings. I appreciate the suggestions, but it doesn't look like either. My periods are fine and I am not overweight--I also have low blood pressure instead of high.

Marlene I never figured out why I had anemia--other than that I was vegetarian and not diligent with supplements. At the time I was applying for the Peace Corps and was refused on medical grounds. So I took prescription pills for a few months and then the day before my last check I ate a huge steak dinner. It worked.

I was a Peace Corps volunteer for 2 years in China. It is my guess the pollution there has caused some health problems that are showing up now. However, I have read that exposure to toxins does not really present like my symptoms.

I have one more question: I have been reading that R-Lipoic acid comes highly recommended and I have already started taking Benfothiamine. What about alpha lipolic acid and acetyl L-carnitine? I will look into B12 as well...

[mrsD]

If you take r-lipoic you don't need the alpha, and vice versa.

The carnitine is a good idea, if you have some mito damage from toxins.

Have you been tested for heavy metals? Some toxins cause acne. Dioxin I believe is one. In severe poisoning the face is affected and has severe acne.

If you can find a physician there who specializes in Environmental medicine that would be a good idea.

Not all PCOS patients are overweight. Over the years I've had some very normal looking women with this diagnosis. The acne thing is more common and so is some facial hair, or more hair on the body. PCOS is driven by androgens. Many women don't even know they have PCOS until they find conceiving difficult and get fertility testing, and it shows up then. I have seen some estimates that up to 25% of young women today have this in some form, mild and up.

Cushing's is more dramatic with the hypertension and weight gain. Cushings is driven by cortisol ( with some androgens as well). Both may have some insulin resistance leading to severe cases having type II diabetes.

If you have regular periods, and not ones like 45 days in between, or skipped, it is less likely, since that is how it starts.

Do the B12, using methyl form and do it correctly and see if there are any changes in how you feel in 3 months. Start at 5mg a day on an empty stomach.

It can be very difficult to find root causes of vague sensations, and doctors, typically don't respond well when patients describe them. Women especially get ignored or misdiagnosed.

[rose_thorn98]

I have had very similar case to yours. Minus the acne. But I had episodes similiar that came and went and then came back in August and has not gone away. I have symptoms now all over. I've had every test possible and seen 3 neuros. Nobody can diagnose me. If I ever get an answer I will post it here. In the mean time I wish you the best as I know what you are going through. In the mean time, I hope you find somebody who can help you.

[cope]

Thanks again for your feedback. Rosethorn I am thinking I might never get answers to this after the roller coaster so far...
mrsD as for POCS I see that diagnosis may involve OGTT and ultrasound. I will request OGTT anyways and I actually had a gyno ultrasound in August to see if the numb patch was from herpes (even though I had no other signs of herpes -like the rash that would preceed the numbness if I understand correctly- and of course no STD was found).
And I am going to an enviro health doctor! I have made an appointment at the Great Smokies Medical Center in Asheville. It is very expensive but I think it will be money well spent--at least psychologically I will feel like I am covering all the bases.

[dahlek]

Had you had a bout of flu in the 4-6 months prior to this all happening?
I ask, because that's what caused my neuropathy. If not, no problem.
Also, have you been checked out with pre-diabetes type tests? Glucose tolerance tests and urine tests for other than heavy metals. .... This could be a possibility, especially if you've other relatives with diabetes [such as cousins, aunts and uncles, etc.] Just a couple of the many many things docs check out and check OFF the various PN lists for diagnostics....
While this paper is older? The basic principles for diagnosis are still the same:
http://www.aafp.org/afp/980215ap/poncelet.html Just click on the blue.
This and other resources are up the stickies at the top of this forum's page... They are chock full of many papers and tests etc that can help you get a grasp on how difficult it is to diagnose the dozens of neuropathies that exist. Read, learn and ask questions! None are too silly!
:hug::hug::hug:'s!!!!!!! - j

[rose_thorn98]

Had you had a bout of flu in the 4-6 months prior to this all happening?
I ask, because that's what caused my neuropathy. If not, no problem.
Also, have you been checked out with pre-diabetes type tests? Glucose tolerance tests and urine tests for other than heavy metals. .... This could be a possibility, especially if you've other relatives with diabetes [such as cousins, aunts and uncles, etc.] Just a couple of the many many things docs check out and check OFF the various PN lists for diagnostics....
While this paper is older? The basic principles for diagnosis are still the same:
http://www.aafp.org/afp/980215ap/poncelet.html Just click on the blue.
This and other resources are up the stickies at the top of this forum's page... They are chock full of many papers and tests etc that can help you get a grasp on how difficult it is to diagnose the dozens of neuropathies that exist. Read, learn and ask questions! None are too silly!
:hug::hug::hug:'s!!!!!!! - j

Thank you for posting that article....it was the most in depth one I've seen yet. I wish that the MD who wrote it was my Neurologist.