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Old 06-29-2017, 02:58 PM #1
Usif Usif is offline
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Default Does SFN lead to disability?

Hello there,
I am a 27 year old male. My symptoms started about 2 months ago. It started with my left toe being numb and tingly. It then progressed to both feet and hands. Now both of arms and legs up to the thighs have that tingly sensation throughout. I've been under a lot of stress and anxiety because of this. My PCP did a full blood work and everything came back normal. I then saw a neurologist which he ordered brain and cervical MRI, both came back negative. He tried to assure me that I am fine and these symptoms will go away soon.
I wasn't convinced at all and went to see another neurologist yesterday. He did an EMG test and it was negative as well. He ordered more blood tests to rule out autoimmune disease/lyme/toxins..etc
He told me that if everything came back normal he'll do a skin biopsy.
I am almost positive that I have SFN since my symptoms are totally similar. I have had sleepless nights because of burning to both my hands and feet. I've had multiple panic attacks thinking that these are my last days of my life. My PCP prescribed Xanax for me and said to take it if I had more panic attacks. I've been very careful with it since I know its a very addictive drug. I am still under a lot of stress and anxiety. I keep looking things up about the prognosis of SFN and if my life is about to change to the worst. I've been very healthy all of my life. I eat very healthy and workout 4 days a week. I am also starting dental school next month and will move to Boston for that. I keep thinking that I will fail in school because I wont be able to use my hands in the future. I keep having nightmares about ending up in a wheelchair because of this disease.
Browsing through this forum gave me some comfort. I showed me that I am not alone in this. My family and friends think I am overreacting about this and they think that my symptoms are psychological.
I just want someone to tell me that I would still be able to pursue my life goals even if I had SFN.



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Old 06-29-2017, 03:35 PM #2
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Hello Usif: Thanks for signing into NeuroTalk! I am not able to comment with regard to your concerns. However, since this appears to be your introductory post here on PC I thought I would simply leave brief reply welcoming you to NT. I trust you will find the time you spend here to be of benefit.

By the way, in case you haven't already found it, you may want to take a look at the Advanced Search feature here on NT. You'll likely find much additional information related to your concerns:

https://www.neurotalk.org/search.php
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Old 06-29-2017, 08:28 PM #3
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Quote:
Originally Posted by Usif View Post
Hello there,
I am a 27 year old male. My symptoms started about 2 months ago. It started with my left toe being numb and tingly. It then progressed to both feet and hands. Now both of arms and legs up to the thighs have that tingly sensation throughout.
Hi Usif,

While I cannot speak to your diagnoses or future prognosis I'm responding here because your story is near identical to mine and I just joined the forum two days ago also seeking information.

I had the same progression in both feet and hands with it now progressing up my lower legs and a hint of now progressing to the forearms. I was also always healthy all my life and paid attention to my diet. I had the same blood work-ups, brain MRI and just recently a second neurologist performed an EMG test which was negative, at which point he confirmed SFN with cause unknown. I'm awaiting results of autoimmune & thyroid blood tests.

The first neurologist states there are no more diagnostic tests available for me, however after some research that does not appear to be accurate so that can be challenging also. You may have to continue to press for all possible diagnostic avenues and be your own advocate even when others are doubting or dismissing you.

I can relate to your stress and fear of where this may be heading, at the onset of this I started imagining the worst. Would I eventually be incapacitated? The frustration mounts because doctors can't be sure of anything so you can't get straight forward predictions. Yep, it's easy for others, even family members, even some doctors, to not fully understand the affect of this condition as they can't see any outward appearance of the disease. In some cases some people won't even believe you and paradoxically the more outwardly stressed you appear some might start pegging you as being psychosomatic. My advice would be to ignore them, stay strong, stay focused and work with your doctors.

Perhaps being significantly older than you I've had more time to practice dealing with stress. As best you can pay attention to your breathing, when you feel the anxiety make a conscious effort to breathe slow and rhythmic. Get up, move around, go outside for some fresh air. I know it's easier said then done but try not to constantly run worst case scenarios in your mind, it just becomes a negative feedback loop. With practice you can calm things without the meds. I try to remind myself that none of my worrying will change the outcome so I try to manage things as they come, one step at a time, the best I can.

Have your doctors prescribed anything to try and relieve the SFN symptoms? I was prescribed gabapentin, being a health nut of sorts I don't like taking pills but it has significantly taken the edge off the nerve symptoms without any noticeable side effects. If you can mitigate the discomfort that goes hand in hand with reducing stress, at least it has for me.

Stay strong and good luck!
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Old 06-29-2017, 08:42 PM #4
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Originally Posted by Apex Clipper View Post
Hi Usif,



While I cannot speak to your diagnoses or future prognosis I'm responding here because your story is near identical to mine and I just joined the forum two days ago also seeking information.



I had the same progression in both feet and hands with it now progressing up my lower legs and a hint of now progressing to the forearms. I was also always healthy all my life and paid attention to my diet. I had the same blood work-ups, brain MRI and just recently a second neurologist performed an EMG test which was negative, at which point he confirmed SFN with cause unknown. I'm awaiting results of autoimmune & thyroid blood tests.



The first neurologist states there are no more diagnostic tests available for me, however after some research that does not appear to be accurate so that can be challenging also. You may have to continue to press for all possible diagnostic avenues and be your own advocate even when others are doubting or dismissing you.



I can relate to your stress and fear of where this may be heading, at the onset of this I started imagining the worst. Would I eventually be incapacitated? The frustration mounts because doctors can't be sure of anything so you can't get straight forward predictions. Yep, it's easy for others, even family members, even some doctors, to not fully understand the affect of this condition as they can't see any outward appearance of the disease. In some cases some people won't even believe you and paradoxically the more outwardly stressed you appear some might start pegging you as being psychosomatic. My advice would be to ignore them, stay strong, stay focused and work with your doctors.



Perhaps being significantly older than you I've had more time to practice dealing with stress. As best you can pay attention to your breathing, when you feel the anxiety make a conscious effort to breathe slow and rhythmic. Get up, move around, go outside for some fresh air. I know it's easier said then done but try not to constantly run worst case scenarios in your mind, it just becomes a negative feedback loop. With practice you can calm things without the meds. I try to remind myself that none of my worrying will change the outcome so I try to manage things as they come, one step at a time, the best I can.



Have your doctors prescribed anything to try and relieve the SFN symptoms? I was prescribed gabapentin, being a health nut of sorts I don't like taking pills but it has significantly taken the edge off the nerve symptoms without any noticeable side effects. If you can mitigate the discomfort that goes hand in hand with reducing stress, at least it has for me.



Stay strong and good luck!


Thank you for your response and your kind words.
Yes, the first neurologist prescribed gabapentin 100mg 3 times a day. I still haven't used it since I am getting used to the feeling. The past two weeks I've been sleeping relatively good. I am also afraid that I would get sleepy and drowsy during the day when taking gabapentin so I am still avoiding it. The pain isn't that bad but the feeling is very uncomfortable. The second neurologist also prescribed Lexapro for me since he saw how anxious and worried I was but still haven't used it.



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Old 06-30-2017, 12:55 AM #5
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[QUOTE=Usif;1246042]T. The pain isn't that bad but the feeling is very uncomfortable. The second neurologist also prescribed Lexapro for me since he saw how anxious and worried I was but still haven't used it.

I hear you about the uncomfortable feeling v.s. pain sensation. Everyone is different but I didn't get drowsy on the 100mg pill which I believe is the lowest dosage offered. I didn't take three a day right away either and only take as needed. You might try just taking one on a day where you don't have to work to see how it affects you, it can be effective in reducing the weird nerve sensations. I'll get some aching at times in the feet with this condition which gabapentin is not designed to address but for that I just take ibuprofen.
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Old 06-30-2017, 12:21 PM #6
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There is a form of PN that is inherited. It is called Charcot Marie Tooth, and has no cure. This is diagnosed by a special DNA test, which is done by Athena labs and maybe some others.

There are several variants of this genetic problem, and the test is different from the others now offered on TV and otc. It is also much much more expensive for this specific DNA test.

Here is a site with more information:
What is CMT? | Charcot-Marie-Tooth Association

We don't have many posters here, because once diagnosed, self help isn't often effective. These patients may have nutrient deficiencies but fixing those only help with the problems that
co-exist with the CMT. Our forum can help with daily life like choosing shoes, and other comfort solutions, though.

Having PN for only 2 months or a brief time, the possibility of CMT is not often brought up. Short time frames can suggest other causes, which may wane, or flare in the future. CMT is usually progressive with no wane.
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Old 06-30-2017, 12:35 PM #7
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it is impossible to predict whether your SFN will lead to disability. It will depend on the cause, whether the cause can be treated, it also depends on the individual person, some will experience spread of areas affected and worsening symptoms, some will plateau and not get worse, some will get worse very slowly, some will get better. The best thing you can do is to provide your body with the best conditions possible to heal, such as nutrients, vitamins, healthy life style, treating or avoiding the underlying cause or causes.
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Old 07-01-2017, 12:15 PM #8
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From experience, I can tell you that the anxiety and worry you have over this is magnifying your symptoms tremendously. Of course it's a natural response, but do everything in your power to try to calm yourself down.

When my neuropathy first hit, my stress and anxiety level went through the roof. I now know how much that was just making a bad situation 10x worse. And when I get under stress now, it's literally like a switch has been flipped. My symptoms which may not have been bad before immediately flare. I assume it's my overactive nervous system's response to cortisol...or something like that.

I'm not one who can meditate, but I do find that deep breathing has a calming influence on me when I'm riled. Try to find some means of lessening your anxiety. You'll find this forum to much comfort as you read how some people have lived with this for 20 years. I've had the neuropathy for 3 1/2 years, and while the symptoms have morphed and will always wax and wane, I am better than I was initially. They also have not affected my motor nerves in the slightest yet...it's all sensory.

Like you, I've avoided the gabapentin. I took it initially, but stopped when I decided it would be better to see if I could live without it. It's nice to know it's there should it get worse, but I've done fine without it.
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Old 07-01-2017, 12:33 PM #9
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From experience, I can tell you that the anxiety and worry you have over this is magnifying your symptoms tremendously. Of course it's a natural response, but do everything in your power to try to calm yourself down.



When my neuropathy first hit, my stress and anxiety level went through the roof. I now know how much that was just making a bad situation 10x worse. And when I get under stress now, it's literally like a switch has been flipped. My symptoms which may not have been bad before immediately flare. I assume it's my overactive nervous system's response to cortisol...or something like that.



I'm not one who can meditate, but I do find that deep breathing has a calming influence on me when I'm riled. Try to find some means of lessening your anxiety. You'll find this forum to much comfort as you read how some people have lived with this for 20 years. I've had the neuropathy for 3 1/2 years, and while the symptoms have morphed and will always wax and wane, I am better than I was initially. They also have not affected my motor nerves in the slightest yet...it's all sensory.



Like you, I've avoided the gabapentin. I took it initially, but stopped when I decided it would be better to see if I could live without it. It's nice to know it's there should it get worse, but I've done fine without it.


You gave me so much hope! I really appreciate your response. I will try to control my anxiety and stress. Thank you


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