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Old 10-14-2021, 03:49 PM #1
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Default Expecting to be told it's Idiopathic

So I haven't an appointment yet with my Neurologist Consultant but I really expect she will say clinical diagnosis of PN but Idiopathic in nature.
Where does this leave me?
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Old 10-14-2021, 04:34 PM #2
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It leaves YOU to work on finding yourself WHY neuropathy is going on. A friend was told Ideopathic for years and I told her what was going on. There are so many reasons for neuropathy, and look at what your body is going thru and what drugs, disease, alcohol, surgeries, over eating sugars/carbs you are doing in your life.

My friend's doctor had her coming to him for years, taking drugs he prescribed and she believed him. Didn't do research into WHY she has neuropathy. .
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Old 10-19-2021, 10:22 PM #3
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Quote:
Originally Posted by Mark D View Post
So I haven't an appointment yet with my Neurologist Consultant but I really expect she will say clinical diagnosis of PN but Idiopathic in nature.
Where does this leave me?
I'm in the same position..."Idiopathic". Case closed. That was 10 years ago, fortunately, I only have numbness, and only rare stabbing pain. My new normal, at least there has not been much worsening, and I am not taking any medications.

I just live with it, am not usually conscious of the PN, although sometimes the degree of numbness does temporarily worsen in my right foot.
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Old 10-20-2021, 01:39 AM #4
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Thanks it seems the same with me numbness is starting with ankle burning
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Old 10-20-2021, 01:59 AM #5
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I first developed PN in January 2020 and was referred in February 2020. I had conduction tests in June 2020 and 2 sets of MRI Scans that summer. All negative. Due to Covid I had a telephone consultation in October 2020. I had my first face to face consultation with a Neurologist last Friday.

The tests he did would have been indistinguishable from the ones he would have carried out 40 or 50 years ago. This entailed walking in a line, feeling a prick ( and believe me I did) in various parts of my body, pushing and pulling tests to test motor function. Brief ophthalmoscopy with an ancient ophthalmoscope. An exam failing undergraduate standard attempt at confrontational visual fields. A blood pressure test that was aborted too early to have any practical value. No working knowledge of my notes or medication (none). In short it was a waste of my and his time.

I would be interested to hear experience with your Neurologist when that happens Mark.

I agree with TN Thomas, I have minor symptoms and I just get on with it.
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Old 10-25-2021, 08:24 PM #6
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Mine started in mid 2019. It was what I call pins and needles in my heels. I thought it was from sitting too much. I do A LOT of driving. I like to have my legs up while watching TV. I had to let my heels over hang the foot stool due to the pins and needles. Then in Nov of 2019 I felt an odd tugging or pulling sensation in my lower left abdomen. At a yearly physical my MD did not think it was anything. Then in March 2020 I had a funny buzzing deep in my groin..it lasted a few days. Then almost suddenly in April 2020 I had weird sensations down both calves...sort of burning, pins and needles, maybe even a dullness to my skin that is hard to describe. That same month I had weird sensation all over...sudden shock feelings in my palms, sudden numbness in different areas around my lips, burning in my calves. My MD had no idea but wrote "neuropathy" in his notes and referred me to a local neurologist. I was FREAKING out. I had turned 56 that year and had always been healthy. I was overthinking and thought MS. The neurologist did a simple exam checking my gait, balance, pin prick sensitivities. Then he said SMALL FIBER NEUROPATHY. Believe it or not I was relieved. I had convinced myself it was MS. He said "it's symmetrical, MS is not symmetrical." Of course, later it began to sink in that I had SFN. He did not do advanced tests, so I looked for a specialist. In Jan 2021, I went to a neuropathy clinic in Rochester NY. Had lots of blood work, had punch biopsies, had nerve conduction...and get this...the specialist found nothing. The biopsies showed axonal swelling. That was all they had. He wrote that it looked like SFN but the tests were not able to confirm, and a cause had not been found..

Now it's Oct 2021. I have head to toe paresthesias. I have weird mottled skin on my arms. I get sudden sensations of all kinds from head to toe: buzzing, itching, sudden burning, sudden skin changes. I have developed a patch of numbness on my right great toe.

I had one follow up. I told them about the worsening skin changes like hives and wheals that suddenly erupt on my skin. They suggested an allergist or immunologist.

It continues to drive me crazy. I believe that it is worsening...I don't know when or if it will plateau. My wife wants me to stop focusing on it and try to live.

I have another follow up in 2 weeks. I get emotionally worse leading up to follow ups. I find myself concentrating on it more.

Sorry...no advice. I feel depressed with the idea that I have something current medical science can't help with. My wife tells me to think about those with so much worse than me. I sleep well most of the time. Skin seem chronically sensitive not, but it is not really painful except for fleeting burning sensations. I have no motor impairments.

But I do have IT. And I don't know what it is and where it is going.
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Old 11-09-2021, 05:36 AM #7
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Default Nerve root entrapment

Hi all it seems that the diagnosis is severe nerve root entrapment that causes my neuropathy. Very little that can be done to stop it
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Old 11-09-2021, 02:47 PM #8
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I have posted what has helped me and this could help you. Take both of these daily for a while: Inosine and Sphingolin, Pure Formulas sells both of these.

When I first started on these 2, I bought both and took both daily, now only Inosine now and then. Did great for me.
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Old 11-09-2021, 03:26 PM #9
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Quote:
Originally Posted by Mark D View Post
Hi all it seems that the diagnosis is severe nerve root entrapment that causes my neuropathy. Very little that can be done to stop it
I wonder...
What is entrapping the nerve root?
At the spinal level?
Why can't anything be done?

I hope you got the answers to questions like those already..
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Old 11-10-2021, 07:57 AM #10
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Quote:
Originally Posted by Jomar View Post
I wonder...
What is entrapping the nerve root?
At the spinal level?
Why can't anything be done?

I hope you got the answers to questions like those already..
The Neurology consultant said that surgery was too invasive as it was near to my spinal cord where the nerves come out.
Multiple locations she said
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