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Old 10-24-2010, 06:46 PM #1
rose_thorn98 rose_thorn98 is offline
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Default 3 months and no diagnosis-please help

3 months ago I started with parasthesias in my feet. Within a week it moved to my hands and I also had burning pain in my feet within one week. Over a period of a few weeks, I began having parasthesias in arms, up to my shoulders, and legs up to my hips. At 6 weeks, it had developed to burning pain with parasthesias all over my body, even face and scalp.

EMG normal
Blood work for everything from HIV, thyroid, glucose, Lupus, Sjoren's, and a whole lot of other autoimmue diseases, all Normal.
Only abnormal test was slight elevated for Celiac, still awaiting intestine biopsy results.
MRI of brain Normal

I suspect SFN, but still waiting for Dr. to order the skin biopsy.

Can you have SFN all over your body like this, and has anyone ever had it come on so fast?
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Old 10-24-2010, 07:19 PM #2
Sheltiemom18 Sheltiemom18 is offline
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In a word, yes. It did, only the hands and feet were the last to be affected. However, Sjogren's was diagnosed as the underlying cause of my non-length dependent small fiber neuropathy (skin biopsy showed this).

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Old 10-24-2010, 09:13 PM #3
invisable invisable is offline
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Default Yep!

Quote:
Originally Posted by Sheltiemom View Post
In a word, yes. It did, only the hands and feet were the last to be affected. However, Sjogren's was diagnosed as the underlying cause of my non-length dependent small fiber neuropathy (skin biopsy showed this).

Sheltiemom
I'll second the motion.....all over for me in a matter of weeks, from the tip of head to the tip of my toes (literally)!!

Celiac may be your cause, have been reading that is a common cause of non-length dependent small fiber neuropathy, my cause is not found (idiopathic).

I am currently filling up on Gabapentin (1200 mgs a day), but thinking about asking to change to Lyrica since pain is not controlled as well lately, getting pricks every few seconds......what a way to live....like a torture chamber!
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Old 10-25-2010, 12:40 AM #4
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With Celiac, you almost surely have some malabsorption issues which would lead to b6, b12, and folic acid deficiencies. That could cause some of the symptoms you are describing.
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Old 10-25-2010, 04:24 AM #5
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Is this one doctor you are seeing and if so what speciality? When I was first going through dx testing my results did not show and then I had a repeat of my nc/emg and I was dx with PN. I have had every test basically under the sun and the why is still unknown. My symptoms came on very quick and then spread. I will say for myself looking back at the 2 years before I had odd problems for ex I had super tight calves and also was sick monthly for a couple years with a fever. Can you identify anything in your past that maybe you brushed off? For ex stomach issues, other illness,etc?
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Old 10-25-2010, 08:45 AM #6
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Quote:
Originally Posted by chiarichic View Post
With Celiac, you almost surely have some malabsorption issues which would lead to b6, b12, and folic acid deficiencies. That could cause some of the symptoms you are describing.
Yes, I agree. I would get B12 and Vit D tests as well. Get your number result so we can discuss them here. (doctors in US are still using old, outdated lab ranges and telling people they are "normal" when in fact they are not).

Poor absorption of nutrients can lead to paresthesias. Calcium is one big cause of odd sensations. Low Vit D would lead to poor calcium absorption, etc. Also use of acid reducing drugs, negatively impacts calcium absorption, as well as magnesium, B12, folic acid, zinc and iron.

When my thyroid issues caused my initial PN, it was hands and feet.

Gluten intolerance can occur without Celiac being present in testing results. And it can cause neuropathy.

This wonderful website resource has a separate section devoted to neuropathy, and testing:
http://sites.google.com/site/jccglutenfree/

Many nutrients can be malabsorbed if you have gluten problems and/or Celiac. Going gluten free will heal the inflammation and allow you to over time restore normal absorption. Taking some nutrients in the the meantime is important.
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Old 10-25-2010, 10:58 AM #7
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Thanks for the replies. I did also have the following test results:

B12 580 (range above 200 normal)
B1-only 9 (range 9-44)
B6-22 (range 2.1-21.7)
Vitamin D-25 Hydroxy was 36 (range 30-100)

I was on alot of acid reducers (prilosec, pepto bismol, and mylanta) but it was about 2 years ago. I was on them for a year. Due to undiagnosed stomach pain, which I now beleive was from gluten intolerance.

Only think I remember before I got this neruopathy was that I, along with my whole family, had a bad stomach virus about 3 weeks prior to it all starting. Nobody else in family has the neuropathy, so I don't think the stomach virus caused this.
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Old 10-25-2010, 08:07 PM #8
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Default Daniella......?

Quote:
Originally Posted by rose_thorn98 View Post
Thanks for the replies. I did also have the following test results:

B12 580 (range above 200 normal)
B1-only 9 (range 9-44)
B6-22 (range 2.1-21.7)
Vitamin D-25 Hydroxy was 36 (range 30-100)

I was on alot of acid reducers (prilosec, pepto bismol, and mylanta) but it was about 2 years ago. I was on them for a year. Due to undiagnosed stomach pain, which I now beleive was from gluten intolerance.

Only think I remember before I got this neruopathy was that I, along with my whole family, had a bad stomach virus about 3 weeks prior to it all starting. Nobody else in family has the neuropathy, so I don't think the stomach virus caused this.
How long was it between your negative EMG and your positive one?
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Old 10-25-2010, 10:00 PM #9
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Quote:
Originally Posted by invisable View Post
How long was it between your negative EMG and your positive one?
I've only had one EMG, which was negative. It was 2 months ago. Which was one month after onset of symptoms.
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Old 10-26-2010, 01:47 AM #10
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Well, based on your blood work, I'd start with benfotiamine 300mg a day (this is an improved version of thiamine).

There are people with low thiamine, and this leads to all kinds of problems because thiamine is used to metabolize carbs, and alcohols/aldehydes which are in many foods including alcoholic drinks.

People with Candida in the intestines have high levels of aldehydes given off by the Candida when it lives of the sugars you eat, and these aldehydes can cause nerve symptoms.

Benfotiamine is not in local stores normally, so check with iherb.com
I use Doctor's Best brand which is affordable. There are many studies (many from Europe) over the years using this form of thiamine successfully for PN, diabetic and otherwise. It has recently come down in price from being very very expensive (and hard to find even).

more here:
http://neurotalk.psychcentral.com/post653193-4.html

Your D is low but not disasteriously low, like some of the posters who come here. The general estimate rule of thumb is 1000IU for each 10ng desired increase. So 2000IU of D3 may bring you up. Your B12 is right on the borderline (200 is NOT a normal low value), so you may want to raise that a bit with 1mg methyl B12 orally on an empty stomach. Available from iherb too for pennies a day. The new information on B12 is to treat anything below 400-500.
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