Author Topic: small fiber neuropathy and treatment?  (Read 5996 times)

tcronrath

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small fiber neuropathy and treatment?
« on: June 28, 2011, 10:20:58 AM »
Hi,
saw a neuro yesterday for emg/muscle test. The emg showed some small abnormalities, nothing big.  She said the muscles were a touch irritated as well.  Diagnosed small fiber p neuropathy due to autoimmune issues and recommended I get a second opinion from a different rheumatologist and for treatment of the neuropathy.  Usually she said small fiber neuropathy is reversible, with good aggressive treatment.  I know this is true as it reversed itself last time, though it was not this bad.  Do any of you have any experience with this? 

Thanks for the information,

Tammy
15 mg prednisone
150 mg Imuran
.5 mg clonazepam

Carolina

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Re: small fiber neuropathy and treatment?
« Reply #1 on: June 28, 2011, 11:20:07 AM »
Hi Tammy,

This is what Wikipedia says about treatment of Small Fiber Neuropathy:

Treatment is based on the underlying cause, if any. Where the likely underlying condition is known, treatment of this condition is indicated treated to reduce progression of the disease and symptoms. For cases without those conditions, there is only symptomatic treatment.
There is no current treatment to cure small fiber peripheral neuropathy, but Intravenous immunoglobulin (IVIG) is often used as well as plasmapheresis.

http://en.wikipedia.org/wiki/Small_fiber_peripheral_neuropathy

The Mayo Clinic classes all peripheral neuropathies together.

http://www.mayoclinic.com/health/peripheral-neuropathy/DS00131/DSECTION=treatments%2Dand%2Ddrugs

Good luck

and HUGS

I have PN and take Cymbalta and Oxcarbezapine (an anti-seizure drug) which help with pain.

Elaine
Female. 72 CVID.Sjogren's,IC.Periph.Neuropathy.Anemia,Copper Def.Raynauds,CAD,Osteoarthritis,Blepharitis,Meniere's/Deafness.Hiatal Hernia,Fordyce Spots,IVIG Gamunex,Medrol Atenolol,Pilocarpine,Aleve,Copper,Cymbalta,Nasonex,Lipitor,Estrogel,B-12,Iron,Alpha Lipoic,D-Mannose,NAC,Co-Q10,Turmeric,O

One and only

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Re: small fiber neuropathy and treatment?
« Reply #2 on: June 28, 2011, 11:30:41 AM »
I have small fiber neuropathy,, and Carolina is right,, find the underlying reason and a cure MAY happen,, that is unless the nerve is completely dead,, and in that case you need the help of Christ to make anything happen,, kinda like that Lazarus guy,, but anyway,, mine was confirmed by a punch biopsy after being shocked so many times and everything coming back ok,, then a smart neuro took the punch biopsy,, WOW,, hes got SFN,, was out on neurotin,, IVIG,, (they stopped that),, although I think it was doing me some good,, I feel its progressing, and I really dont kow where or what there going to try next,, I dont believe theres anything that will help at this point, so if it worked once for you, I hope it works again,,

Patty

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Re: small fiber neuropathy and treatment?
« Reply #3 on: June 28, 2011, 08:21:27 PM »
I have small fiber neuropathy and did have improvement with treatment so it is possible. I also had some areas (the ones affected the longest time) that did not improve.
Sjogren's, Vasculitis,  IC, Hashimoto's Thyroiditis, Raynauds, Peripheral Neuropathy

anita

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Re: small fiber neuropathy and treatment?
« Reply #4 on: June 28, 2011, 09:13:12 PM »
There are MANY causes of SFN.  If it's truly Sjogren's causing it, then IVIG is your best bet like Carolina said...for treatment, not reversal.  It really does depend on the actual cause and in many cases that is never found.   I would not hold my breath for a reversal, but there are a 'few' treatments that help reduce pain.

Good luck
49 yr old SjS, APS w/strokes, Severe Autonomic Neuropathy, PN, Nephrogenic DI, IgG def., Asthma, Gastroparesis.  Sero-negative w/+ lip biopsy.  Meds: IVIG, Arixtra, Aspirin, Plaquenil, Nitroglycerin, Cardizem, Imdur, Toprol XL, Domperidone, Nexium, Midodrine, Florinef, Symbicort, Percocet,

Jozee

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Re: small fiber neuropathy and treatment?
« Reply #5 on: June 29, 2011, 12:34:00 AM »
I too have SFN and take 3000 mg of gabapentin a day. Helps but only a small amount. Neuro said there is nothing that can be done for it to make it better. I've tried just about every med for it but have allergic reactions to them all. Loved Savella but had horrible bruising and my bleed test time was at 17 minutes so had to stop taking it. Just the length of time it takes to shower causes the neuropathy to go out of control from standing. I pray one day for a cure or for miraculous healing...I'm not picky which it is.
Small Fiber Neuropathy, Sjogrens, Costachondritis, Sleep Apnea, Carpal Tunnel, High Blood Pressure, Fibromyalgia, Constrictive Pericarditis, horrible brain fog

Gabapentin, Amlodipine, Oxycodone, Evoxac, Omeprazole, Savella and Numoisyn tablets, an aspirin a day

Female 44

hockeyluvr

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Re: small fiber neuropathy and treatment?
« Reply #6 on: June 29, 2011, 06:09:57 AM »
I pray one day for a cure or for miraculous healing...I'm not picky which it is.
you need the help of Christ to make anything happen,,

I have polyneuropathy .. small fiber ... all over the stink'n place.   I was a 'good christian' before this hit a little over a year ago.  I prayed my fool head off expecting a miracle because ... afterall .. I was a good christian.  Nothing came.  This disease has changed my views on religion and on our 'loving' father.  Yet another thing this disease has taken from me ... my faith.  I know we aren't supposed to talk about religion so I'm not.  But I AM talking about yet another aspect that this disease destroys.  My faith was a big part of my life .... now I question it all.  Makes me very sad ...
Sjogrens, Poly Neuropathy, degenerative disk disease, Osteoperosis  - On Plaquinel

mom16

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Re: small fiber neuropathy and treatment?
« Reply #7 on: June 29, 2011, 07:44:49 PM »
Well it's the difficult situations in life that help us grow stronger. It's like the saying...sailors learn from rough seas. I also have small fiber neuropathy that is progressing and I have learned a lot about myself and the graciousness of my friends since I was diagnosed with Sjogren's four years ago. Life is very precious and I thank God everyday for the chance to live on this earth.

Karen
Primary SJS with small fiber neuropathy.  Plaquenil, Neurontin,  and Cymbalta
Female-46

Jozee

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Re: small fiber neuropathy and treatment?
« Reply #8 on: June 29, 2011, 09:52:41 PM »
I understand how this disease could hake it easy to leave a persons faith or at least question it. We are all different so we all will react different. Doesn't mean any of us are better than the other. For me...it has made my faith even stronger. For those who have lost their faith...we are all here to support each other and not judge, just help.

To all...I hope tomorrow is a better day and thank EVERYONE for being my friend!
Small Fiber Neuropathy, Sjogrens, Costachondritis, Sleep Apnea, Carpal Tunnel, High Blood Pressure, Fibromyalgia, Constrictive Pericarditis, horrible brain fog

Gabapentin, Amlodipine, Oxycodone, Evoxac, Omeprazole, Savella and Numoisyn tablets, an aspirin a day

Female 44

mom16

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Re: small fiber neuropathy and treatment?
« Reply #9 on: June 29, 2011, 10:10:22 PM »
I agree Jozee, I just didn't say it as well as you did. We all should feel comfortable sharing on this forum without feeling like we're being judged.  We are all in this together and, like you said, we all handle our experiences differently. And as we know even within Sjogren's the severity of symptoms can be very different.

Love to you all,
Karen
Primary SJS with small fiber neuropathy.  Plaquenil, Neurontin,  and Cymbalta
Female-46

One and only

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Re: small fiber neuropathy and treatment?
« Reply #10 on: June 30, 2011, 02:43:29 PM »
When my son went on Submarines for 6 years we exchanged our crosses that we always had around our necks, it was kind of bonding,, knowing that we were as close to each other as the cross we wore around our necks,, we never gave them back to each other,, but since whatever it is that got my body to go  south on me I have taken that cross off so many times I lost count,, I had lost my faith,, just like Liz did, what gave me more to question my faith was seeing children suffering from cancers,,poor things just suffering,, and again I thought,, would a loving caring God do this, but were told were given not more then we can bear, Hmmm,, I guess losoing a child isnt that much to bare, but who am I to question, I only know this, somedays I have faith and others I dont and God knows it because he has to hear me screaming at him,but I hear he has thick skin and can take it,
  I hear the word miracle tossed about loosley nowadays, like it wa a miracle he survived (fill in teh blank),, no,, he was just lucky,, and the next day he either woke up able to continue his life which was probably a loviong family, a great job he loves, family vacations to look forward too,, basically a great life, somoe of us here have wrote of having that kind of life, who wants to drag around a person that can barely walk or lift a cup to there mouth, I guess in the end i;ll find out who was right about faith, I;m curious to find out,, but i;m inno hurry to see dead relatives meeting me, well maybe my dad,, that wold be nice,

Jozee

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Re: small fiber neuropathy and treatment?
« Reply #11 on: June 30, 2011, 06:38:41 PM »
A loving caring God would not give this disease to me. It's not from God. I hear we are not to discuss religion and I understand that because we are here to help each other and not alienate anyone. So...maybe this topic should be dropped and those who "believe" can pray for all of us and those that don't "believe" can still know we love them too.
Small Fiber Neuropathy, Sjogrens, Costachondritis, Sleep Apnea, Carpal Tunnel, High Blood Pressure, Fibromyalgia, Constrictive Pericarditis, horrible brain fog

Gabapentin, Amlodipine, Oxycodone, Evoxac, Omeprazole, Savella and Numoisyn tablets, an aspirin a day

Female 44

irish

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Re: small fiber neuropathy and treatment?
« Reply #12 on: July 01, 2011, 12:50:06 AM »
For those of you who had faith but lost it I guess I would suggest that you search the Bible and other books on spirituality plus talk to ministers/priests, etc. Spirituality is such an important part of our life and can make sure a huge difference in how we cope and accept thingns---whether illness or other stuff in life. I am not trying to change anyone's mind, just suggesting a little research and talking with others. It really is an interesting subject. Irish ;D