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Old 07-12-2012, 10:10 AM   #1
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Post For those who have PN

Can you tell me how long it took for you to get diagnosed? What was the cause of your PN (if you know) and if you don't know did you suspect a cause? Would you mind sharing your initial symptoms and any symptoms you experience now? Thanks!

 
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Old 07-12-2012, 04:33 PM   #2
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Re: For those who have PN

Hi nolalore,
I started having neuropathy symptoms in 2005, but it took until 2008 to finally get a diagnosis. I saw 2 neurologists and 2 rheum's. I had previously been diagnosed with rheumatoid arthritis 20 years earlier. The cause of my SFN is related to my RA as described by both neuros. So, while it took some time to finally get to the root of the cause, there isn't much that can be done for me. Keeping my RA in check has not changed the SFN.

SFN, a type of PN, like Ruby says, takes a good neuro who is up on his stuff to really help you. I hope you can get to the right diagnosis.

Mine started with tingling, electric like shocks in both of my feet. Then it felt like my toes were crushed and my ankles were broken. The skin burned and my feet went numb.
So strange how something numb could hurt so much!! Now I walk with a cane, can't stand or long or walk far. Chronic pain has drastically altered my life. But the only thing I can do is to try and adapt to the changes. So far medications have not helped me much.

I hope you get to the bottom of your problems and find some help!!
Best wishes on your journey!
Daisy

 
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Old 07-12-2012, 06:22 PM   #3
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Re: For those who have PN

Greetings Nolalore! Hypoglycemia and Diabetes (diseases involving blood sugar problems) are sometimes implicated in peripheral neuropathy. In my opinion of course there could possibly be other causes such as nerve impingement somewhere along the nervous system. Sometimes poor circulation may also be a problem in my opinion. A professional of course could best check the blood sugar and find out the real cause. As usual everyone makes their own health choices in life and are in charge of their own health care. Peace, sjb

 
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Old 07-13-2012, 01:16 AM   #4
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Re: For those who have PN

Hereditary here. I was diagnosed at about 2. As for living with it, I've never known anything else to compare. I know my balance is **** compared to everyone else, but I've never had normal balance to realise that it's off. I know it's not normal to have such slow feelings, but can't say how it's different to give my experience there.
I guess that's the one good thing about a condition from birth, no great sense of loss; my decline is very slow...

 
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Old 07-13-2012, 04:37 PM   #5
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Re: For those who have PN

daisymaegrl, I'm sorry to hear it took you so long to be diagnosed! I guess it's good you know what caused your SFN but I'm sorry you have to experience it. I hope you can find a way of helping your symptoms lessen. Does mild exercise help at all? I know that I feel worse if I don't exercise every day.

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Originally Posted by daisymaegrl View Post
Hi nolalore,
I started having neuropathy symptoms in 2005, but it took until 2008 to finally get a diagnosis. I saw 2 neurologists and 2 rheum's. I had previously been diagnosed with rheumatoid arthritis 20 years earlier. The cause of my SFN is related to my RA as described by both neuros. So, while it took some time to finally get to the root of the cause, there isn't much that can be done for me. Keeping my RA in check has not changed the SFN.

SFN, a type of PN, like Ruby says, takes a good neuro who is up on his stuff to really help you. I hope you can get to the right diagnosis.

Mine started with tingling, electric like shocks in both of my feet. Then it felt like my toes were crushed and my ankles were broken. The skin burned and my feet went numb.
So strange how something numb could hurt so much!! Now I walk with a cane, can't stand or long or walk far. Chronic pain has drastically altered my life. But the only thing I can do is to try and adapt to the changes. So far medications have not helped me much.

I hope you get to the bottom of your problems and find some help!!
Best wishes on your journey!
Daisy

Last edited by nola; 07-13-2012 at 04:39 PM.

 
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Old 07-13-2012, 04:45 PM   #6
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Re: For those who have PN

Hi sjb, is that what caused your neuropathy? - hypoglycemia or diabetes? What type do you have? I've been through all the blood tests (at least 20 of them so far) and no causes have been found yet, no diseases, no diabetes, etc. Only thing that has been found "wrong" with me is the cyst in my spinal tissue but I don't know yet if that can be a cause. I find out on Monday.

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Greetings Nolalore! Hypoglycemia and Diabetes (diseases involving blood sugar problems) are sometimes implicated in peripheral neuropathy. In my opinion of course there could possibly be other causes such as nerve impingement somewhere along the nervous system. Sometimes poor circulation may also be a problem in my opinion. A professional of course could best check the blood sugar and find out the real cause. As usual everyone makes their own health choices in life and are in charge of their own health care. Peace, sjb

 
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Old 07-13-2012, 04:48 PM   #7
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Re: For those who have PN

Hi anaestmia, wow, I'm so sorry to hear you were diagnosed at such a young age and that you've had to live with this your whole life. Do you have specific ways of dealing with your PN, is there anything that helps?

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Hereditary here. I was diagnosed at about 2. As for living with it, I've never known anything else to compare. I know my balance is **** compared to everyone else, but I've never had normal balance to realise that it's off. I know it's not normal to have such slow feelings, but can't say how it's different to give my experience there.
I guess that's the one good thing about a condition from birth, no great sense of loss; my decline is very slow...

 
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Old 07-13-2012, 05:33 PM   #8
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Re: For those who have PN

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Originally Posted by nolalore View Post
Hi anaestmia, wow, I'm so sorry to hear you were diagnosed at such a young age and that you've had to live with this your whole life. Do you have specific ways of dealing with your PN, is there anything that helps?
Not really. Having known nothing different, I don't really have to learn to cope.
I've always had to rely on visual for balance, so it's not a shock to fall on my *** in the dark, where as someone who has just lost this ability might be a bit taken aback. I wear afos sometimes, but that is the extent of any help...

 
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Old 07-18-2012, 04:19 AM   #9
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Re: For those who have PN

Hi Nolalore, It took about 6 months to diagnose my PN. It started with tingling and numbness in my front part of my feet. The Dr thought at first it was blood circulation for which I had an op and then when I realized that the Dr did not know anything and I had wasted time and money, I made an appointment with a Neurologist. He sent me for numerous blood tests which revealed that I was pre-diabetic and had an under active thyroid but basically he termed my PN as being idopathic (dont know the reason)

I went onto Lyrica which helps for the pain (I know when I forget to take it) and take Tramacet when I know I will be walking quite a bit (cant walk far) and if I have to walk long distances, I take my wheelchair.

I hate the PN and have often asked myself, why me.... and then just when I forget I have it, I will be reminded with sharp electric shocks in my feet.

When I get down I visit this site and know that I am not alone.

 
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Old 07-19-2012, 05:20 PM   #10
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Re: For those who have PN

nolalore,

It took about eight years to receive a diagnosis but by then it had set in with a vengeance. It was a broken leg and ankle that caused them to get serious about treating me. I broke my leg and ankle when I did a quick step while coaching soccer. Without reflexes I was able to turn my ankle around 180 degrees. They have tested me for everything that could cause my neuropathy including sorgen's but I am listed as idopathic and have accepted my fate.

As someone else stated SFN is particularly hard to diagnosis. I have heard it called hysterical neuropathy because it is so hard to diagnosis and they can easily put it down to anxiety.

In the early stages I suffered some loss of feeling and pain in the bottoms of my feet then loss of feeling and loss of reflexes in the legs. Later I had muscle spasms and sharp piercing pain. This was livable but when the pain started at night I was suffering more pain than you would think PN could cause. I now take Lyrica, Cymbalta, and a narcotic.

Hope this helps out, if you have any more questions just ask.

Tingles

 
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Old 07-20-2012, 07:12 AM   #11
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Re: For those who have PN

Dear Nolalore..a skin biopsy four years ago diagnosed that i had idiopathic polyneuropathy a diffuse neuropathy that affects all the nerves. It all started with burning feet...now with numbness ankles up legs...tingling of body...electric shocks in back..lower back burning..now starting burning on left hand pinky..I too have acknowledged that this is my fate...have tried cymbalta, elavil etc. am still taking lyrica with increased dosages over the years..also on percocet which helps me to forget this demon that has invaded my body. I pray to God for a soon cure for this disease..will include you in my prayers..cream9518

 
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Old 07-20-2012, 07:29 AM   #12
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Re: For those who have PN

Known causes of PN are hypothyroidism, connective tissue diseases, like RA and lupus, Vit B12 and folic acid deficiency, heredity, alcohol abuse and diabetes. All can be screened for with blood tests, except heredity and alcohol use (history dependant). A typical PN workup includes blood tests -TSH, Vit b12, folate, RA, ANA, sed rate or CRP, glucose or HbA1C for diabetes, and GGT, a liver enzyme if alcohol abuse suspected but not forthcoming in history. Physical findings are numbness to pin *****, can't tell difference between sharp and dull, can't tell position of big toe, slow reflexes. A nerve conduction study is usually done to confirm it, and corrective measures for any cause identified. Symptoms usually start in feet and work their way up the leg over time- numbness, tingling, crawling sensations (like bugs), burning, electric sensations, *****ling. Good luck and hope if you have it, an easily treatable cause is identified, as early on it can reverse and symptoms can go away.

 
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Old 07-20-2012, 09:16 AM   #13
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Quote:
Originally Posted by tingles View Post
nolalore,

It took about eight years to receive a diagnosis but by then it had set in with a vengeance. It was a broken leg and ankle that caused them to get serious about treating me. I broke my leg and ankle when I did a quick step while coaching soccer. Without reflexes I was able to turn my ankle around 180 degrees. They have tested me for everything that could cause my neuropathy including sorgen's but I am listed as idopathic and have accepted my fate.

As someone else stated SFN is particularly hard to diagnosis. I have heard it called hysterical neuropathy because it is so hard to diagnosis and they can easily put it down to anxiety.

In the early stages I suffered some loss of feeling and pain in the bottoms of my feet then loss of feeling and loss of reflexes in the legs. Later I had muscle spasms and sharp piercing pain. This was livable but when the pain started at night I was suffering more pain than you would think PN could cause. I now take Lyrica, Cymbalta, and a narcotic.

Hope this helps out, if you have any more questions just ask.

Tingles

 
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Old 07-20-2012, 09:27 AM   #14
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Re: For those who have PN

Dear ladybud, everything you posted is ME! There is a light shining on someone who will have a cure for all of us PN sufferers.

 
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Old 07-22-2012, 10:40 AM   #15
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Re: For those who have PN

Thanks for all of the responses! I'm sorry you all have to deal with PN in life. I wish all of you the best possible in continuing to deal with this. I know how badly it can affect your daily lives.

All my blood tests were normal, but I feel like I can't rely on the results, because when they did blood tests that supposedly show if you have arthritis, mine showed as negative, even though I do have mild arthritis in my neck, hands, arms, and joints. I was shown exactly where the arthritis is in my neck by my neurosurgeon on my MRI.

I also have a cyst/mass in my spinal tissue that they said cannot cause the PN either. However, it does cause my chest and back pain because of where it's located.

3 specialists now have said that the arthritis cannot cause the numbness, tingling, zapping, tremors, etc. but I've read in numerous sources that it is possible. I don't know what to think anymore. I'm sure I'll go through the EMG/NCT on Tuesday and it will be fine, then they'll tell me, "Well, I still don't know what's wrong with you, your PN is idiopathic."

 
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