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idiopathic small fiber peripheral neuropathy

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Unread 12-17-2012, 04:29 PM   #1
cbar
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Unhappy idiopathic small fiber peripheral neuropathy

Hi- It has been about 3 yrs. since I posted on NeuroTalk. My symptoms started 10 yrs. ago after explosive dirrhea in a Third World Country. Had aches, chills, neck ache. Next night I felt a painful jab of pain way up high inside my nose -and I mean way up high. Then I felt my sinus secretions run like water for about 5-6 seconds and then thickened up behind my nose. A few days later, I had waves and waves from head to toe of prickling all over my entire body, that happened about 8 to 10 times. After that my abnormal sensations started in my face and worked it's way down to my feet. Needless to say Full Body. Abnormal sensations like water was running over my face, felt like water was running out of my ears and that things were coming out of my nose. I had 2 skin biopsies a few yrs. ago and was diagnosed with small fiber peripheral neuropathy. One biopsy under my eye/where maxillary sinus would be and the other was on my calf. My sinus secretions had gotten real thick, had sinus surgery and this made things worse. I tried IV Igg and plasmaphoresis- didn't help. About 1 yr. after I got sick, I had a spinal tap which showed WBC at 9, the doctor said that they like it to be under 5. Here I am thinking after 1 yr. and my WBC is still elevaated why didn't they do something. Doctors just said " probably some CNS infection residual". Hey - that would be my brain. One neurologist said I had a brain lesion right on the spot that would control my autonomic nervous system. I tried every drug and nothing ever helped. My sinus issues had gotten worse. I have been irrigating them 2 times a day for 10 yrs., My under eyes swell up, then down, up and down. Talk about stretched out skin under my eyes. 24/7 post nasal drainage, it never, never stops. I checked out allergies. Had shots for 5 yrs., didn't do anything for my sinuses. I am just about to give up. I got this when I was 45 and now I am 55 yrs. old. I am without a job, so is my husband, no health insurance anymore. My husband just keeps saying "We'll get you fixed" My kids think it's all in my head. (I got proof that it's not) - my kids are 30 yrs. old and one is an RN Manager for a brain injury unit. You would think she would understand. NOT!!! She tells me that I don't want to do anything and that I am depressed all the time. Well don't look now but I am. My other twin daughter lives back at home with her 3 kids, 3, 5,6. I was watching them up until a few weeks ago. All I take is 2,000 mg fish oil, calcium citrate with Vit. D. (my levels are good) baby aspirin, vit c 500 mg. and R-liopic acid 100 mg. Please help me, don't know how much longer I can stand this, espically my face and sinuses. Doctor said there is nothing new and nothing to help with SFPN. Any advise or input would be wonderful.
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Unread 12-18-2012, 01:57 AM   #2
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cbar,

It is great to have you come and be with us. You will fine a great number of dear friends to listen when you are in need of ears. Please, just let us know how we can help you out. You will find out we are supportive and relaxing place.

Please keep us up to date on your situation. Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.


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Unread 12-19-2012, 08:34 AM   #3
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Originally Posted by cbar View Post
Hi- It has been about 3 yrs. since I posted on NeuroTalk. My symptoms started 10 yrs. ago after explosive dirrhea in a Third World Country. Had aches, chills, neck ache. Next night I felt a painful jab of pain way up high inside my nose -and I mean way up high. Then I felt my sinus secretions run like water for about 5-6 seconds and then thickened up behind my nose. A few days later, I had waves and waves from head to toe of prickling all over my entire body, that happened about 8 to 10 times. After that my abnormal sensations started in my face and worked it's way down to my feet. Needless to say Full Body. Abnormal sensations like water was running over my face, felt like water was running out of my ears and that things were coming out of my nose. I had 2 skin biopsies a few yrs. ago and was diagnosed with small fiber peripheral neuropathy. One biopsy under my eye/where maxillary sinus would be and the other was on my calf. My sinus secretions had gotten real thick, had sinus surgery and this made things worse. I tried IV Igg and plasmaphoresis- didn't help. About 1 yr. after I got sick, I had a spinal tap which showed WBC at 9, the doctor said that they like it to be under 5. Here I am thinking after 1 yr. and my WBC is still elevaated why didn't they do something. Doctors just said " probably some CNS infection residual". Hey - that would be my brain. One neurologist said I had a brain lesion right on the spot that would control my autonomic nervous system. I tried every drug and nothing ever helped. My sinus issues had gotten worse. I have been irrigating them 2 times a day for 10 yrs., My under eyes swell up, then down, up and down. Talk about stretched out skin under my eyes. 24/7 post nasal drainage, it never, never stops. I checked out allergies. Had shots for 5 yrs., didn't do anything for my sinuses. I am just about to give up. I got this when I was 45 and now I am 55 yrs. old. I am without a job, so is my husband, no health insurance anymore. My husband just keeps saying "We'll get you fixed" My kids think it's all in my head. (I got proof that it's not) - my kids are 30 yrs. old and one is an RN Manager for a brain injury unit. You would think she would understand. NOT!!! She tells me that I don't want to do anything and that I am depressed all the time. Well don't look now but I am. My other twin daughter lives back at home with her 3 kids, 3, 5,6. I was watching them up until a few weeks ago. All I take is 2,000 mg fish oil, calcium citrate with Vit. D. (my levels are good) baby aspirin, vit c 500 mg. and R-liopic acid 100 mg. Please help me, don't know how much longer I can stand this, espically my face and sinuses. Doctor said there is nothing new and nothing to help with SFPN. Any advise or input would be wonderful.
Hi doses of Nutritional Yeast for the B-vitamin content will help, as will Standard Process Neuroplex (buy it from a chiropractor). It also sounds like you may have contracted herpes at some point and might want to consider taking an anti-viral medication like Zovirax preventively.
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Unread 12-19-2012, 10:45 PM   #4
Rrae
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Smile Hello cbar!

Welcome to NT!

You've come to a wonderful place of support and understanding.
Make yourself right at home in this down-to-earth atmosphere, where people are easy to talk to and the care is truly genuine.

Look through the different forums and post anywhere you feel inclined.
Just holler if you have any questions or need help in finding your way around.
There's a friend around every corner

It's great to have you!

Rae
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Unread 12-23-2012, 07:41 PM   #5
cbar
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Default Cbar - idiopathic small fiber peripheral neuropathy

Is there anyone that could give me any input on my idiopathic small fiber peripheral neuropathy. Had it 10 yrs. now and I can't take it any more. I tested negative for everything except when the doctors made 2 skin biopsies, which came back as SFN. I tried everything and nothing helps. I think my face and my sinuses are driving me the most crazy. I can handle my whole body abnormal sensations but not the face and sinuses. There is no where to turn any more.
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Unread 12-23-2012, 07:49 PM   #6
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Hello
you may find the Peripheral Neuropathy forum here helpful
http://neurotalk.psychcentral.com/forum20.html
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Unread 12-24-2012, 09:23 AM   #7
MelodyL
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Quote:
Originally Posted by cbar View Post
Is there anyone that could give me any input on my idiopathic small fiber peripheral neuropathy. Had it 10 yrs. now and I can't take it any more. I tested negative for everything except when the doctors made 2 skin biopsies, which came back as SFN. I tried everything and nothing helps. I think my face and my sinuses are driving me the most crazy. I can handle my whole body abnormal sensations but not the face and sinuses. There is no where to turn any more.
Hi there.Welcome.

Do me a favor and go and get your latest blood work results.

I would like to know your B-12 levels. I don't care if they are in the normal range. I'd like to know the number. Just curious.

Thanks much.

Melody
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Unread 12-25-2012, 06:22 PM   #8
cbar
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Default To MelodyL from Cbar

My B 12 level was 766 vit D level at 40. All blood work good. Had CSF work done one yrs. after I got sick my Igg levels were at 468. I had IV Igg for a long time and then yrs. after I did it subQ at home. It brought my levels up to 667. They have stayed the same for about a yr. now. But now I don't have any insurance- I can't go to any doctor anymore. I just want to give up totally.
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Unread 12-26-2012, 01:47 PM   #9
Rrae
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Smile Hi cbar!

You will find the Peripheral Neuropathy forum (in which Chemar gave you the link) very VERY helpful! When I first came here, I was completely lost and wasn't getting much help from my doctors. I felt completely alone.
You'll be amazed at all the good info there is - especially up in the top section called the 'Stickies'.

You've come to the right place!
Please don't lose hope! You'll soon see that you are not alone in this and that there ARE ways to gain the upper hand of this very frustrating condition. Don't let it get the best of you.

Rae
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Unread 01-05-2013, 09:28 PM   #10
cbar
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Default to anyone from Cbar

I have posted several times and I really never got any replys. I don't know if nobody ever heard of the paranasal sinus issues and all the other things I posted about but I never really never get any in put on any of it. Thanks! Cbar
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