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Old 07-20-2012, 07:28 PM   #1
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Newby - need some info on sfn please

Hi all,

I've been on the MS board for a year, without a dx. Saw an neuro-ophtalmologist today who says that I definitely DON't have MS. He believes I have small fiber neuropathy. He is sending me to another specialist to confirm it. If it's confirmed, then they will work backward to see if they can find what has caused it (negative RA factor, neg Lupus testing, not diabetic. B12 if fine, etc etc....)

So I'm still processing, but I have several questions
-My symptoms came on very suddenly (healthy marathon runner, 43), and have since gradually worsened. Is that common with sfn.
-Do any of you with sfn have heat intolerance? Heat makes my symptoms so much worse.
-Can sfn affect energy?
-If this IS sfn, is there anything that can be done???

Many thanks
Gully

 
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Old 07-20-2012, 10:39 PM   #2
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Re: Newby - need some info on sfn please

Hi Gully,
Welcome to to the neuropathy board!!

I am a SFN'er, mine is autoimmune related to my rheumatoid arthritis.

And to answer your question, mine is definitely worse in the heat, but I don't know if this is true for all SFN'ers! I have had SFN for almost 8 years now. And yes, it can cause the fatigue you mentioned. But so can some of the meds that are prescribed, so sometimes it is hard to know just what the culprit is. Has your doctor prescribed any meds for you?

I wish you the best of luck in getting to the root of your problems. It has been a long and complicated journey for me, but stay positive and as active as you can!! Some people have success with meds, others find things like acupuncture, massages and water therapy helpful. It is a lot of trial and error!!
Best wishes and keep us posted on how you make out!
daisy

 
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Old 07-21-2012, 08:43 PM   #3
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Re: Newby - need some info on sfn please

Hi,

I just started taking modafinil for the fatigue. I had been on neurontin for pain. It helped somewhat, but I quickly developed a tolerance for each jump in dosage and decided the side effects were worse than the pain. The n-o I saw this week suggested amytriptyline (sp?)... but I'm waiting to see the next specialist before trying anything else.

Thanks
Gully

 
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Old 07-23-2012, 10:01 AM   #4
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Re: Newby - need some info on sfn please

Hello Gully,

Yes heat can increase the symptoms of SFN. I was heat intolerant for years following a heat stroke and now heat increases my symptoms greatly. I cannot say about the suddenness of the disease. I have had issues for many years before being diagnosised. Yes SFN affects your energy. Finally there is not much that can be done with the exception of maintenance of the symptoms. I have been under treatment for six or more years and not only can nothing be done there is still a slow increase of symptoms. Not the news you wanted to hear I am sure but the hard truth.

I take amytriptyline, cymbalta, lyrica, and oxycontin for my SFN. This combination takes care of the pain so I can function. Without the oxycontin I am in too much pain to function. I am sure the others help also but the oxycontin is the only one I have had to do without for a period of time.

I hope that this news is not too negative. SFN is a hard disease to cope with but it can be done with a little bit of acceptance. My SFN is idiopathic meaning they cannot determine the cause. This is true in many cases.

Tingles

Last edited by tingles; 07-23-2012 at 10:03 AM. Reason: added info

 
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Old 07-24-2012, 03:10 PM   #5
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Re: Newby - need some info on sfn please

Thanks for the response.

I'm having a rough day today, thunder and lightning storm which seems to make things worse as well

All the best,
Gully

 
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Old 07-25-2012, 06:08 AM   #6
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Re: Newby - need some info on sfn please

Quote:
Originally Posted by Gullyabb View Post
Hi all,

I've been on the MS board for a year, without a dx. Saw an neuro-ophtalmologist today who says that I definitely DON't have MS. He believes I have small fiber neuropathy. He is sending me to another specialist to confirm it. If it's confirmed, then they will work backward to see if they can find what has caused it (negative RA factor, neg Lupus testing, not diabetic. B12 if fine, etc etc....)

So I'm still processing, but I have several questions
-My symptoms came on very suddenly (healthy marathon runner, 43), and have since gradually worsened. Is that common with sfn.
-Do any of you with sfn have heat intolerance? Heat makes my symptoms so much worse.
-Can sfn affect energy?
-If this IS sfn, is there anything that can be done???

Many thanks
Gully
Hi there,

I am new here too, as of yesterday. Also in the same boat! I just saw a neurologist yesterday and he thinks I have autonaumic sfn. Just saying I have a million questions too, you are NOT alone! I have been dealing with my symptoms for 4 years and have many other diagnoisis' on top of (before this) sfn, that other doc's thought this is. I suppose they are running many tests to figure out what is causing this on you too? bloodwork, biopsy. etc?

To answer some of your questions compared to what I am going through, YES mine affects energy big time, if this is what it is. Heat does make things worse. Things are progressively getting much worse over time!
What my neuro told me they have to figure out through biopsy if this is genetic type or not whether it can be cured or not, if it ISN'T genetic (known through skin biospy), they can treat this and regenerate the nerves back to original state eventually and I will be most likely back to normal. If it is genetic all they can do is treat sympotoms for life. So it depends on skin biopsy they will take, they look at nerves and antiboties in the biopsy.

Hope this helps!

Last edited by keagan06; 07-25-2012 at 06:11 AM.

 
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Old 07-25-2012, 11:59 AM   #7
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Re: Newby - need some info on sfn please

I don't think a "skin" biopsy can determine if any specific person's SFN has a genetic cause. On the other hand, a "sural nerve" biopsy is a biopsy performed to determine if small fiber nerves have been damaged. This is done because SFN doesn't show up on EMG/NCV tests.

Generally, while any one person's SFN may have a genetic cause, determining that the cause is genetic is usually not possible yet, and the SFN is labeled idiopathic, i.e., the cause isn't known.

Treatable cause of SFN include diabetes and prediabetes. Controlling these underlying conditions may allow nerves to regenerate or control the progress of SFN.

Best to all, Ruby

 
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Old 07-25-2012, 06:34 PM   #8
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Re: Newby - need some info on sfn please

Ruby,

According to my neurologist at Vanderbilt they can now test for genetic SFN but the test is expensive and does not do much for you so they do not always do it.

Tingles.

 
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Old 07-25-2012, 11:05 PM   #9
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Re: Newby - need some info on sfn please

Hi Tingles - Thanks for the update on genetic testing. I'll research it further. This board is so great to get input from others with SFN. I'm interested in the genetic aspect because I suspect that my SFN is genetic. Even though my SFN didn't really hit me until I was 65, I now can look back and see early signs of it, such as foot cramps, when I was even a teen. My 2 children don't seem to have inherited any disposition to SFN, but I worry about my grandkids. Thanks again. - Ruby

 
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