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Old 01-13-2021, 09:35 PM #11
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Wondering about the Grape Seed extract - what dosage is recommended to take?
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Old 01-14-2021, 06:51 PM #12
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Default Small fiber neuropathy

Hello, I have been just diagnosed with small fiber neuropathy this past Monday. It was through a nerve/skin biopsy that my neurologist gave me.
For a year in a half my primary thought it was anxiety and it never was.
My symptoms are sever from balance issues and tremors throughout the body 24/7 for a year plus. I even get tension in the face area.
I have just started Gabapentin and they are trying that first. The neurologist has no idea what sparked this all my blood tests were great and all other levels of tests were great.
Does anyone else feel the same all day every day?
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Old 01-14-2021, 09:34 PM #13
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Welcome, skbing5390,

Although I haven't had any experience with small fiber neuropathy, I'm sure there will be someone here who can help you.

You might get more replies if you posted a thread of your own.

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Old 01-15-2021, 12:06 PM #14
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Welcome skbing5390.
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Old 01-15-2021, 08:44 PM #15
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Default Yes, whole body too

I went to the neurologist in town following my general practitioners referral. He said small fiber neuropathy. He was not a specialist. I looked for a specialty clinic on my own and asked a neurologist to send the referral. I just had that visit about 10 days ago. They did a couple additional blood tests and nothing came up. They did EMG and NCS. Nothing came up. I wasn't expecting anything because I was suspecting small fiber neuropathy and that is not measured with those tests. But they also did do the skin biopsy. My skin biopsy shows axonal swelling in the distal site. They are increasing my nortriptyline to 25 mg a day. This is still a small dose and most literature doesn't find nor tryptoling better than placebo. They're also starting me on gabapentin. The doctors warned me that gabapentin doesn't really do much for small fiber neuropathy. I've done lots of research. I am in my 6th decade. Literature seems to say that it can arise in people of a certain age. And 30 to 50% remain without a known cause. You can find hopeful paragraphs in literature that say it will plateau. You will also hear horror stories at some people lose all sensitivity in all of their skin. Getting the skin biopsy has actually made me more depressed. I obviously knew that something was wrong. Anyone can read my initial post. But just seeing that pathology was found, ie axonal swelling makes it all too real. When axons swell it is often a prelude to further degeneration. So the question for me will be how widespread will this ultimately go. I hear people's suggestions about stopping sugar, stopping alcohol, etc etc. I have not made any real life changes yet. Sometimes I think we should do like Caroline and avoid the doctors and simply live our lives. I wish you best of luck. We have to make a choice when we are faced with going down the rabbit hole of traditional medicine or avoiding it all together. I do have a follow-up appointment with the neurology clinic in May. I will go I suppose. But something deep inside of me tells me that this will play out however it is meant to. Learning to live life in the moment is more important now than ever.
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Old 01-15-2021, 09:58 PM #16
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Default Sfn

I think your last comment is an excellent one. Just get on with life. See your doctor or neurologist and you will probably get more info but cannot really help. I am due to see the neurologist in a few weeks but am not really expecting anything from it. My diagnosis is described under my user name Suzyt. I just want to know if my condition will get progressively worse or plateau. Also if I need to warn my son who is 44 of my condition.

I’ll update after my visit but for now I am trying to ignore the progressive increase in the numbness and tingling creeping up my body.
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Old 01-16-2021, 05:08 AM #17
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Quote:
Originally Posted by skbing5390 View Post
Hello, I have been just diagnosed with small fiber neuropathy this past Monday. It was through a nerve/skin biopsy that my neurologist gave me.
For a year in a half my primary thought it was anxiety and it never was.
My symptoms are sever from balance issues and tremors throughout the body 24/7 for a year plus. I even get tension in the face area.
I have just started Gabapentin and they are trying that first. The neurologist has no idea what sparked this all my blood tests were great and all other levels of tests were great.
Does anyone else feel the same all day every day?
Hey skbing,

Good morning and welcome.

Sorry to hear of your symptoms.
I am interested in your dizziness and facial symptoms. I wonder if they are unrelated to your SFN. Do you get temporal or occipital headaches too? ( side or back of head) Do you get tightness in the neck or shoulders?

Atty
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Old 01-18-2021, 08:15 PM #18
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I'm 80 years old with 30 years experience with this elusive, painful malady. I can relate to your experience Mercy. There seems to be little patterns to what sets it off, but I can related how it suddenly goes from everyday chronic pain to acute pain.

It was mostly in my feet until I got radiation for prostrate cancer. Afterwards I had these chronic to acute episodes. Numbing pain migrated throughout my body--face, abdomen and legs .I've found searching for causes such as radiation is a dead end. The official diagnosis is Chronic Idiopathic Polyneuropathy (CIP) In other words the idiots don't have a clue what causes it. In the USA they only know it gets worse with age. it is being researched extensively in Italy and Sweden, but not here.

I focus on the very real problem of my pain and anxiety which will get worse the longer i live. I've found some answers. I have a wonderful PCP who put me on low doses of Cymbalta which was no help and then low doses of Gabapentin also with no results/. But this elusive CIP requires higher doses, up to 800 mg 3 X a day. I'm also being treated by a psychiatrist who has prescribed Remeron at night to help me sleep and Xanax, which has really been a
Godsend.

I've tried medical marijuana. It was no help at all, but some says it has helped if you can afford it. What is working for me now is a combination of (1) Gabapentin (Neurotin) titrating up to 600 mg 3 x a day. (2) one half to one mg of Xanax when I feel it going acute; (3) A Chinese herb called Corydalis. This herb eased the pain before radiation and now I take six capsules a day (4) Daily exercises.

Am I pain free. Of course not, but prayer and mediation have helped me to accept things I can't change and change the thing I can.

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Old 01-19-2021, 09:04 AM #19
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Welcome Wade Senior.
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Old 01-19-2021, 03:43 PM #20
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The official diagnosis is Chronic Idiopathic Polyneuropathy (CIP). I've had it for 30 years. Little research in this country. Researchers can only positively say the condition worsens with age, and it has. My feet are always numb, sometimes with extreme burning pain or pressure, accompanied by dizziness and brain fog. After radiation for prostate cancer, it got worse, going from chronic to acute, migrating throughout my body. Was it aggravated by radiation? Possibly, but the I in CIP sands for "idiopathic. Meaning medicos have no clue what causes it. There is as yet, no real treatments.

I went on a strict plant based diet for a year. It got worse. Medical marijuana--same results. Recently when it went acute causing anxiety, I called my psychiatrist who treats my ADHD. He immediately called in 10 mg. Remeron to help with sleep and diminished appetite and ½ mg Xanax 3X a day if CIP goes acute. My PCP upped Gabapentin to 600 mg. 3 times a day. Along with daily prayer and meditation, I haven’t had an acute case in over two weeks.
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