Author Topic: What did a diagnosis of Small Fiber Neuropathy do for you?  (Read 5503 times)

Sweetgirl

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What did a diagnosis of Small Fiber Neuropathy do for you?
« on: August 22, 2010, 07:06:09 AM »

I believe I have small fiber neuropathy, have had burning on arms, legs, feet, for years.  I thought it was part of fibro, but from what I have read, I think I have nerve damage.  My Rheumy suggested I go for skin biopsy.  So my questions are:

Is it worth the expense?

Did you get relief from the burning with medication? 

If so, what medication has helped you the most?

Are the medications expensive?

Also, did the diagnosis help you financially?  Meaning did it help prove that you can not work, and or did you get any help paying for medications? (special programs)  I have not worked in two years and my health has gotten worse, I really don't think I could hold down or keep a full time position.   

Things are getting a bit tight financially and I am worried about the future. 

Thanks for any input.


Sheltiemom

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Re: What did a diagnosis of Small Fiber Neuropathy do for you?
« Reply #1 on: August 22, 2010, 08:27:46 AM »
Hi, Sweetgirl,

Yes, I had a diagnosis of non-length dependent small fiber neuropathy pretty much right out of the chute.  Although they tested for tons of other things just to be certain it wasn't anything else, my neuros suspected it immediately and ordered the skin punch biopsy because it is the gold standard for Dx'ing small fiber.  Small fiber cannot be Dx'd by EMG.  That picks up large fiber neuropathy.

1.  I did not think the procedure was painful - three sites on the leg are punched.

2.  What did it do for me?  Put a name and a diagnosis to why the burning was there.  Other than that, knowing has done nothing for me yet because (see numbers 3).

3.  Medications have helped some people on this Board who have burning.  I was unable to tolerate them; such as, Neurontin, Lyrica, Pameor.  But there are others that have been suggested.  I'm just too side-effects oriented to do it, and that's why I wouldn't try Cymbalta.  However (see next paragraph).

I've begun a "diet" of B12 (as methylcobalamin), B1 (as benfotiamine) the other B's to round out the complex and R-alpha lipoic acid to see if they can effect some improvement.  The B12, B1 and R-alpha are known to help neuropathy, but don't know if that's everybody.  There can be quite a spread in dosages.  If you're interested, I'll let you know the dosages I've started on per my doc.  He researched them for me , and I've done some Internet searching myself.

Keep in mind, dietary supplements/vitamins are not regulated by the FDA, but there have been clinical trials and studies done both here and in other countries.  They are considered safe and used at quite high dosages by some people.  Don't know if I'd go that high.

4.  I'm retired and don't have to worry about working.  Am sorry that your condition is keeping you from work.  That must be quite a financial worry.  Any chance of working at home?

Hope these answers are of some help to you.

Best wishes,

Sheltiemom

inga

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Re: What did a diagnosis of Small Fiber Neuropathy do for you?
« Reply #2 on: August 22, 2010, 10:44:48 AM »
Small fiber neuropathy does not automatically get you disability.  You must meet the usual criteria to get disability and it is still hard.  I am 5 years away from collecting social security and have decided that trying to get it would take me as long as just aging up.  I don't work tho, I could not.  On disability, all you can do it try, but keep in mind it is a struggle and many do get denied and it can take 3 years of plodding thru hearings.  It is emotionally draining.

A diagnosis of small fiber neuropathy is really quite emotionally devastating.  If you are negative for Sjogren's, and you have small fiber, it is likely that the neuropathy is causing  your issues, and neuropathy is not real treatable.  In general, it is a slowly progressive condition.  Disability determinators won't see it as they do MS, even tho it can be as disabling.

As for treatment, it got me IVIG and docs seem to understand what I am dealing with.  I don't really have the burning pain that many have...I have very severe autonomic issues, joint pain, bone pain, and slew of other things that cause pain.  I don't sweat well hence am prone to overheating.  I have arrhythmias, gastroparesis.  You name it, neuropathy causes it.

As far as worth the money, my insurance paid for it, and I am glad I know I have it or I would be wondering why I am so sick and disabled.  I don't know what the skin biopsy costs, but, it was certainly worth it in my case.  I was not positive for SSA or SSB in bloodwork.  I do have a +ANA but did not at the time of the biopsy.

The only test I had that was really painful was manometry and that is not standard testing for neuropathy.  I have some pretty severe esophageal dysfunction and that test needed to be done.

The skin biopsies and autonomic testing are really nothing...not painful.

navydad

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Re: What did a diagnosis of Small Fiber Neuropathy do for you?
« Reply #3 on: August 22, 2010, 02:37:57 PM »
I was dx;ed with SFN through a punch biopsy,, its been nothing but devastating for me,, my hands are useless,, they burn they hurt when I do something as turn off a light switch,, they hurt when I touch something cold,, I have to put gloves on to get anything from the frig
  I have trouble wlaking,,, my feet burn constantly,, I was at mayo clinic in may,, and there neuro dismissed the results of the biopsy,, saying it was probalby taken from a damaged site,, so I knw I was screwed on getting answers there,,, still searching,, mayo says no SS,, my rheummy says I do, no help in the way of meds,, Inga gets IVIG,, i am fighting to get that going again,, no rituxin again,, never never never,, no more stuff to destroy my immune system,,
  go for SSDI,, no sense messing around,, get reports from doctors,, see what they come up in way of DX,, insurance paid for my biopsy,, but not without afight,,, I pray yours doesnt progress,, I am left breathless going don steps,, coming up steps,, doing much of anything leaves me breathless
  Do you have problems with temperatures,, I have problesm with cold,, cold is my enemy,, and I am told to wear heavier clothese,, what kind of answer is that,, I dont wish this on anyone,, but Inga myself and Sheltiemom seems to have been hit the hardest with this,,, those with dry eyes and dry mouth get off easy,, we all have that n addition to the small fiber neuropathy,,, good luck,,, and force the issue with this,, it does get worse if not treated or slowed down

Sheltiemom

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Re: What did a diagnosis of Small Fiber Neuropathy do for you?
« Reply #4 on: August 22, 2010, 05:34:32 PM »
Hi again, Sweetgirl -

Kamie is right regarding SSI  If the bottom line is that you are simply too sick to work at all, go for it.  Get a good SSI lawyer if you must.

If you have health insurance, it SHOULD (but might not) pay for the skin punch biopsy. 

But if you really want to know whether or not you have it, SPB is the way to go.  Not promising though that if you do have it, the meds/supplements will work.

Good luck,

Sheltiemom 

Sweetgirl

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Re: What did a diagnosis of Small Fiber Neuropathy do for you?
« Reply #5 on: August 23, 2010, 08:41:16 AM »
Thank you for all the information.  I don't know what's NOT emotionally hard about these illnesses.  I don't want to have SFN or anything else wrong with me.  I still can not accept this illness, that I won't get better, even after 10 years of struggling with it I am still in denial that this is my life. 

Last night was bad, burning up and down my legs, all of my fingers and even my jaw and cheeks were numb or burning.  Then the vicodin made me nauseous. 

Why have health insurance if they can be selective about what tests are ok and what are not!  If a doctor agrees that a test is warrented it should be covered.  I don't want holes punched into me for God's sake.   The frustration of not feeling like I can keep a job is overwhelming at times, just like dealing with bad doctors, unsupportive family for my illness, but I also deal with the same issues for my son's illness.  I just feel cursed.

I do appreciate all of the input here, I am just in a dark mood and sick of trying to hold it all together.  I know you all understand.  I will look back on what was suggested when I am feeling a bit stronger and not so totally disgusted with myself and the world I live in.

inga

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Re: What did a diagnosis of Small Fiber Neuropathy do for you?
« Reply #6 on: August 23, 2010, 09:16:00 AM »
Oh the holes are nothing...they use a tool like for mole removal.  It doesn't hurt.  The skin biopsy is nothing!  Yes, you do have to accept that you have this, and that may be something you prefer at this time, not to do.  You don't have to have any further tests if you don't want to.  Neuropathy isn't real treatable, and if you have a solid case of confirmed Sjogren's, that may be enough to satisfy your need for diagnosis.  If you are seronegative, then it may be a diagnostic rabbit hole you wish to explore....then again maybe not and that is fine.

I have had so many tests,  this one was NOTHING compared to some things.....any one who has had a manometry, feel free to chime in...That test made me think I would die....

Yes, it is depressing to awaken every morning and be sick....I feel drop dead sick...like hangover, flu sick....also, joint pain, muscle pain and numb sick....this is my life....at least I am not 12 years old and dealing with muscular dystrophy.  I have to remind myself, that life isn't fair. 

I have a lot of wonderful people in my life, and I want to be with them for a long time....so I have to fight this the only way I know how, with my mind.  Yes, I DO feel sorry for myself, many days...many moments, and at times I feel like throwing in the towel....but, seriously, I guess I never feel, Why Me?  There is so much suffering in the world, and I don't think I have it the worst....I have it bad, but not the worst.

Coping with this disease isn't easy....every one must find their own way.  I have learned to accept I have down days, bad periods of time, time when the disease lurches forward or creeps forward...not much I can do.