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Old 02-03-2009, 06:14 PM   #1
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Small Fiber Neuropathy Gang

The last thread was closed by the moderator because of the number of posts. The SFN thread was a big help and comfort for me. It helps to hear stories and suggestions from others who share SFN. I hope that you all find the new thread so we can continue this support network that has developed. Allie

 
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Old 02-03-2009, 07:12 PM   #2
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Re: Small Fiber Neuropathy Gang

Hello Allie and the SFN Gang,
I hope that this thread will keep us all talking to each other and all the listeners. Thanks for opening this conversation Allie, I will keep writing and reading. I use the information I get here to talk with my neurologist of which I see tomorrow.
Good luck to all and best wishes.
Will

 
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Old 02-03-2009, 08:12 PM   #3
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Re: Small Fiber Neuropathy Gang

Hi, Allie and Will. I've been struggling today - fear has a firm grip on me at the moment. But I wanted to let you know that I am still out here amongst the loyal followers!!!

Last edited by 2morrow; 02-07-2009 at 04:36 PM. Reason: too wordy

 
Old 02-04-2009, 04:37 PM   #4
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Re: Small Fiber Neuropathy Gang

OK...wasn't sure how all this worked, and I don't think I was suppose to open a new thread, but I just wanted to say hello. Not sure I have SFN, but it sure sounds like it, and probably fortunate to find a doctor to do a skin punch biopsy so early in my rounds of doctor visits. Does anyone think Lyrica works better than Neurontin? I can switch, but because it does not have a generic, I would have to pay out of pocket. As if you don't feel guilty enough already for being sick, the medical costs are horrific. The Neurontin makes me feel sort of in the twilight zone. I don't get my actual results for a few weeks to definetly have a dx., but I sure would like to know what caused it. I have been run the full panel of blood work and so far everything is fine. I was under a lot of stress at the time, do you think this could have brought it on? Trying to work out stressful situations, now along with this just seems to cruel to be true. I know everyone is different, but if anyone has any helpful suggestions, it would be greatly appreciated.

 
Old 02-05-2009, 07:11 PM   #5
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Re: Small Fiber Neuropathy Gang

Hello Gang and Listeners,
I saw the neurologist yesterday and he is increasing the mirapex from .25mg to .5mg x 4 a day and in one week the nortriptyline will increase from 75mg to 100mg a day. I have to judge whether the dry mouth is too much to handle. I will work through this as the nortriptyline has been the only med that has shown any promise of knocking the pains down. Good thing is I have been walking more without a limp! This is making me very happy. Still it always comes back as the meds wear off or it decides to show me who's boss. Had an ice cold needle in my right foot earlier today. So no resolution as of yet. There's always hope.
Take care and best of luck,
Will

 
Old 02-05-2009, 08:49 PM   #6
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Re: Small Fiber Neuropathy Gang

Hi, I'm featherme because much more than a feather can hurt! I just read the closed thread and I am so confused. I was dx with small fiber neuropathy by a sweat test. I don't sweat. I do have extreme coldness in my hands and forearms now since August. I've always had cold feet and calves. I do get the "fire" and it is horribly painful as is the coldness. I thought that this was all small fiber neuropathy involved. Obviously I'm not right. Is there a site I've missed or a place where there is a good explanation? I'm on no meds for the pain. I am so sensitive to medications it's scary to think of taking a new one. Thanks.:wave
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Last edited by FeatherMe; 02-05-2009 at 08:51 PM. Reason: Didn't like color.

 
Old 02-06-2009, 08:51 AM   #7
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Re: Small Fiber Neuropathy Gang

It sounds like you had Quantitative somatosensory testing (QST)? That is also an approved way to dx SFN. It examines how the autonomic nervous system have been affected. I have autonomic damage also that affects my digestive and cardiovascular systems. I have found that the skin punch biopsy is not offered by a large number of neurologist. The difference is that QST requires subject cooperation and is inherently subjective where as the skin punch biopsy is read by a certified pathologist just like any other biopsy and physical findings are present. Some QST is done in any neurological examination (ex. perception of vibration with the tuning fork, and perception of temperature and touch). I also have alot of sensitivity to different medications. This all started in January of 2006 and finally over the past 8 months I have returned to a more normal existence. That is not to say that I don't struggle each day with some aspect of this disease. I think that the key to trying meds used for SFN is to start out on low doses and titrate up over a period of time. I did not take any meds until January of 2007 when I could no longer go on in the condition I was in. I now take 400mg of lyrica(started out on 75 twice a day), 100mg of nortriptyline(started on 50mg a day), 150mg of trileptal(started on 75mg a day), for the neuropathy. I found the following article to be extremely helpful [url]http://sageke.sciencemag.org/cgi/content/full/2006/6/pe7[/url]

 
Old 02-06-2009, 11:19 AM   #8
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Re: Small Fiber Neuropathy Gang

I developed dry mouth on Neurontin. Did a tiny bit of research - dry mouth leads to tooth decay - there are products out there like ethedent and artificial saliva. Check with your dentist - with all the assault on our bodies why should we lose our teeth.

 
Old 02-07-2009, 08:10 AM   #9
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Re: Small Fiber Neuropathy Gang

Thank you for the info. I have read the article and it makes me even more excited about my coming trip to Coumbia Presbyterian in NYC. They have far better equipment than the last major city I went to.

I was put on lyrica several years ago and it did help until I developed an allergic reaction - laryngeal edema -to it. Ultram also helped but I had to stop due to stomach pain - GERDS and possible ulcer were already there but exaserbated by the Ultram. I have gone off two supplements - L'Arginine and Selenium - for they are acid producing and am taking carafate before taking my toprol-xl at bedtime in hopes of calming my stomach pain.

Cardiac wise I am having problems but I need to see another cardiologist who is more familiar with ANS symptoms and a GI specialist who is aware of the same. Hopefully my trip to NYC will provide a great deal of help.
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Old 02-07-2009, 11:52 AM   #10
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Re: Small Fiber Neuropathy Gang

I did alot of research before I got my dx and to me that article made me realize that I had SFN. Like you I have GI problems too. I have slow moving intestines and acid reflux. I take a Prilosec OTC every day but sometimes that is not enough so I fill in with tums and other things. I also have dysautonomia which was dx by a tilt table test. This causes me to have tachycardia and PAC's. I have a good cardio who definitely believes that all of my cardio problems are related to the SFN but proving it is another thing. I hope that you find someone that can help you at your schedule appointment. I was very disappointed with the care I received at the univ. of alabama in birmingham. It was supposed to be the best hospital in the state. When I mentioned SFN to the neurologist there he didn't want to investigate or do anything to help me. His course of treatment was I'll give you meds and see you every 6 months. I guess that I am just wanting to say be careful because the docs may not be as enthusiastic as you are. allie

 
Old 02-08-2009, 09:11 AM   #11
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Re: Small Fiber Neuropathy Gang

Hello SFN Gang,
I see that I have some of the same symptoms with the indigestion and acid reflux. This has only just started with the taking of the nortriptyline. However it is the only medication I take that knocks the pains down as well as it does, but it seems to come with a lot of side effects. Another side effect that I'm having is the internal shaking that at times, when very bad, causes my hands to shake. I now have to keep track of my blood pressure as this is escalating. I've never had problems before with my pressure. As always, not complaining just telling it like it is for me. Hope all are doing best as can and good luck to all.
Will

 
Old 02-09-2009, 06:18 PM   #12
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Re: Small Fiber Neuropathy Gang

Hello SFN Gang,
Allie, I have had a hard time today. I have had needles sticking in me at different points all day. Very sensitive body wide today with clothing rubbing tops of legs with hands and arms burning. I feel that I will have take a pain pill to end the day. Stabbings in my left foot now, got to go.
Will

 
Old 02-09-2009, 06:54 PM   #13
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Re: Small Fiber Neuropathy Gang

Will,
Sorry that you are having a very bad day. Whenever I am having the pain that you describe I have to take darvacet and it does help. It is ok to take the pain meds. I know with your job in the warehouse that you are not able to take pain meds during the day. Do you have an office where you can go and stay when you are having a bad day? Are the stabbing pains out of the blue or follow some kind of action? For me the burning is the worst but the darvacet somehow quiets that down. Do you think that your SFN is progressing? I am keeping you in my thoughts and hoping that you will have a good nights rest. allie

 
Old 02-10-2009, 05:16 PM   #14
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Re: Small Fiber Neuropathy Gang

Hello SFN Gang,
Thanks for the nice thoughts Allie. I had a rough night but I'm making it ok today. When I have my rough days and nights there is no warning that they are about to happen. I used to be able to feel this coming on, but not anymore. My stabbing pains are anywhere and any time, doesn't seem to matter what I've done, eaten, or drank. Still very sensitive to touch on my arms and legs and don't forget the feet. And yes, I do believe the SFN is progressing just as my neurologist forecast. Another problem that I'm having is I can't tell how bad my shoulders are. They both have torn rotator cuffs, the right for the third time and the left for the first time. The SFN mixes in with their pain and it gets all confusing. Oh well, this I will get through also.
How are you doing? Are you able to go to your childrens ball games and such? How about the work situation? I do have an office, I'm the only one in my 3,200 sq/ft office. My warehouse is 32,000 sq/ft. My office is bigger than my house!
Good luck to all, writers and listeners!
Will

 
Old 02-13-2009, 06:58 AM   #15
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Re: Small Fiber Neuropathy Gang

hey. I only went to one soccer game this season b/c it was just too cold. Baseball season starts next week and the weather here is so unpredictable so I'll have my hot hands and my ice packs ready to go. When the burning gets so bad on my feet I cool them down with ice packs which gets rid of the burning fast. My work situation is good. The people I work for now are totally different than the sob that didn't care and put my life in danger. Guess you can kind of tell that I am a little resentful(lol). I have learned to cope with those emotions and I am a whole lot better now.
I know that you say the nortriptyline is helping you but you can tell when it is time to take is again. I was just thinking that you might ask your doc if you could take it every 8 hours instead of twice a day and that would keep a more constant level in your system. I can tell when it is time to take my meds too. It is like a built in clock is telling me that something needs to happen. At times I worry about getting addicted but I probably already am. I don't have to take narcotics very often but the other meds I can't miss or I start to get antsy. That is just something that I consider at times when things are quiet. I have experienced the alternative(constant pain) and I would rather be where I am even if it means I am addicted to my meds.

 
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