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    Old 03-17-2009, 12:06 AM   #76
    Bobby Flay
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    Re: Small Fiber Neuropathy#2

    Quote:
    Originally Posted by anwise67 View Post
    bobby,
    We have all been where you are but I think that because this has been going on so long and you have felt alone maybe you have developed a type of post traumatic stress. I feel like that happened to me b/c my condition is related to my working environment. You have to have a good support system even when tests come back negative. It was almost 2 years until I got the skin biopsy and I had to seek out a physician in my state who would do the test. My advice to you is to fire all of your doctors and start over. Maybe b/c of your profession, doctors think that they can treat you less than they would if you were not a RN. If my doctor had of done that to me, I would have reported him to the medical board. Don't take this BS. Are you using doctors that are at the same place where you work? There are so many things that can cause SFN, but doctors are so quick to say idiopathic. The neurologist that I saw for 1 and 1/2 years just wanted to take the wait and see approach and he was at the best hospital in my state. Well I knew what I had and I found the most caring neurologist who was a specialist in this disease. I went to him loaded with ammo and when he looked at me and said, "If I were you, I would want the biopsy too. I would want to know", it was an answered prayer. Then he told me that he felt like I was right about the SFN. I have frowned so much that I have permanent lines b/w my eyes but I think restiline can cure that(lol). Sorry to sound so harsh but you have to take back control.
    Will:

    Thanks again, as usual for all of your support. Again, it has helped me more than you will ever know. This disease has changed me completely, just like Diane said. I don't stick up for myself any more. First, because confrontation is just too difficult, just one more thing to deal with if you know what I mean. It is easier just to go along with whatever it is that I never would have stood for in my healthy days. Second, because I am just sick and tired. I have been fighting and struggling, not knowing what was wrong with me, every single day. I just keep on fighting to stay in the game of life, holding on by a thread. I get so tired and frustrated because of the pain, and I have never, ever used it as an excuse, I have never wanted to be treated any differently than anybody else, any healthy person I mean.

    I would really appreciate you listening to me about what happened today. I am so upset and frustrated and just don't know what to make of it. My boss who has previously been just great, always supporting me and respecting my wishes of privacy and being treated with sameness as everybody else, really hurt me emotionally today. She called me on the phone after she had left for the day, never saying a thing except for "how you doin?". She asked me to apologize to a nurses aid who reported to her that I was rude to her. I guess she felt that I was rude to her after a day that I was in charge, the big boss filling in. A confused patient who was supposed to be in isolation and only had one leg, kept trying to get out of bed and was screaming at the top of his lungs. The nurse who had this patient asked me for advice and I said "Have you tried reasoning or bargaining with him?" and she said no, so I went in and told the patient "listen, you can either stay in the bed or a chair and not try to get up or, I can tie you down to the bed and you won't be able to move". This worked for about 20 minutes when he started trying to get out of bed, so we put on a self releasing restraint which he promptly got out of. I told the nurse "you need to tie him down and give him something to relax or he is going to fall", she declined to take my advice saying "well that will only make him angrier". I went to lunch and was called 20 minutes into my lunch because the patient had fallen. I was frustrated because nobody took my advice and what I had predicted, happened. First, the nurse who took over on this patient was sitting in the break room gossiping 25 minutes past the time she was to be on the floor and when she found out that her patient had fallen, she kept right on gossiping and I never got to eat my lunch. First the nurses aid said that the patient had fallen then after the nurse who was 25 minutes late getting on the floor talked to the aid, she told me "well no, the patient slid on floor". I asked the aid "are you sure that he slipped and didn't fall?" and she said "no, he slid". I made out an incident report to that effect, called the doctor to come and look at him, left a voice mail about the 25 minute factor on my bosses voice mail, and that was the end of it.

    My boss screamed at me on the phone because I refused to apologize to this aid who changed her story and I still believe that she lied and that the patient really fell. The oncoming nurse didn't want to get into trouble so she blamed me for being rude to the aid. I can't think of one time where I was rude except to question her about the chain of events. My boss says she is angry with me because 1. I refuse to apologize for something that I did not do. 2. Because I didn't tell her that I suspected that the aid had lied and 3. because I told my boss that I suspect a set up by the nurse who should have been in trouble for patient abandenment and she said that I was way out in left field, another words, crazy. She wanted me to come in and meet with her tomorrow which is my day off, so she can scream at me some more about what she already has screamed at me about and I remembered your words and told her "no". She wants me to come in and meet with her on Wednesday before work starts and I did tell her that I would come in 15 minutes early on Wednesday but I really didn't see why because it seemed we had already said everything and made each other angry. She was cursing and very verbally abusive.

    The thing again is that I don't smile and it could be interpreted as rude, I am really soft spoken and I don't spread rumors or hear say. I come to work, do my job without special treatment, I don't hardly ever even speak, really. I think she is going to fire me. What should I do? This is exactly why I don't stick up for myself. I think you are right, there is just something about me (I have felt this way since I was a child) that gives people the idea that they can push me around, take advantage of me and force me to accept things that I don't believe are just or right and it makes them angry and so I usually just give in. I feel like she is wanting to crunch the budget numbers and with all the money I spend on medicine, doctors etc, I am a huge amount of money in the deficit column and I think she is looking for a way to get rid of me. I feel like I need a witness or a lawyer, I am just shocked, she said that this changes everything and that she is going to have to rethink my position on my floor. Last week she trusted me to be the big boss and now, she is rethinking my position just because I disagreed with her. It just doesn't seem like there is just cause for hearsay, my belief system, and for gosh sakes trying to do everything I could to keep that patient safe and still fire me. I did all of the work, all the phone calls and paper work that the nurse who gossiped for 25 minutes at the beginning of her shift instead of working while she was on the clock, should have done herself. I wasn't the one slacking, she made my job crazy and hectic and yah, I was frustrated at the situation but did not single any one person out to be rude to.

    Help, I am so upset and humiliated, hurt, feel let down, feel verbally abused, feel taken advantage of. She says that I should have told her that she wasn't being hard enough on the nurse who was late getting out on the floor. I don't think that this is my job, it is hers right or wrong? I am so confused, I don't understand. I told her that I would apologize but I didn't know what I was apologizing for and if it was that I thought that the aid lied, I would say I was sorry but I would not mean it. What should I do? Should I call my lawyer, should I call my own witness, should I get another co-worker as a witness or will they be too afraid to lose their own jobs and then not stick up for the truth, because they all have said that they agreed with me? This is exactly why I never stick up for myself, every time I do, it back fires. I think she wants to get rid of me because I spend too much on doctors. She did that recently to a nurse who has cancer. I am trying to figure out what grounds she has to fire me on. I mean I have worked there for 14 years, this aid started working there 2 weeks ago, I don't want to lose my job and everything I have kept on struggling for with all of this pain. If I get fired I will lose my health, life, dental, eye insurance not just on me but my whole family not to mention my pension and my retirement money that I have worked very hard for. Please, please give me your advise?

    Last edited by Bobby Flay; 03-17-2009 at 12:23 AM.

     
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    Old 03-17-2009, 07:46 PM   #77
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    Re: Small Fiber Neuropathy#2

    Hello all writers and listeners,
    I wish all are doing well. I finally have stopped taking the Mirapex. I have been off of this medication since Sunday morning. Coming off this has not been easy with all the strange feelings of my body getting used to not having this chemical in it. I am having off-the-wall, very vivid dreams while sleeping. And when I fall asleep, I can't be awakened from sleep for the first hour or two. My wife has tried to wake me the past two nights without any luck within the first two hours. The pains throughout my body have increased with the stopping, as the medication may have been doing more than I thought. I want to go a few more days before I decide to return to the medication or increase the nortriptyline. I want to see what it feels like not to be on this medication any more, as I want to give myself as good a chance as I can.
    I wish all good luck with their SFN as you treat and fight it in your on way. I'm tired and need to rest. I will write later.
    Will

     
    Old 03-17-2009, 10:03 PM   #78
    daisymaegrl
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    Re: Small Fiber Neuropathy#2

    Hi everyone,
    Will, I stopped taking Cymbalta over 2 1/2 weeks ago and have been absolutely amazed at how that medication had affected my brain and body. Please don't give up on your decision to stop taking the Mirapex. Here are some of the things I have learned from going cold turkey and some suggestions to make it easier. I was so dizzy and unbearably nauseated and still am!! Drink LOTS of water!! I think it helps to flush it out. I wasn't able to function at all for the first 11 days, but hopefully you will not have to wait for so long to feel better. I wanted to go back on the med to ease the side effects but I am not able to afford the drug any longer. I have severe insomnia now but extremely vivid dreams when I do sleep. They would make fantastic Hollywood movie scripts!! The scariest part for me was the audible brain zaps that came from nowhere unannounced. If I move my eyes too quickly I get this wooshing feeling as my vision catches up with my eyes ( not easy to describe!) I can't read anything or concentrate and all of my senses are heightened so that sounds are louder etc. It is a really scary thing to think about what these meds do to us, they may or not be helpful for the SFN but some are harder to stop than others. If I had known this about Cymbalta I never would have started it, but that doesn't mean it effects everyone the same. I have read about Mirapex and I hope you don't have too much trouble stopping it. It does get better!! Really!
    Be really, really nice to yourself and prepare your wife for the emotional ups and downs you will probably go thru. She sounds like wonderful support for you!! I don't know why but I was ashamed to tell my husband I was taking Cymbalta which is prescribed for anti-depression as well as SFN. So he was bewildered at the change in me when I stopped. But I did fess up and he is very supportive and understanding. We are lucky to have such spouses I know.
    Try to keep visual stress low like avoid watching violent movies and TV programs. Try very hard to get proper nutrition. Take vitamins. Take it one day at a time!
    The search for the right combination of medications is hard on our bodies and our brians as we are subjecting them to different chemicals. I wish you well!
    Keep in touch with us as we all need to learn from each other! Cheers!

     
    Old 03-18-2009, 02:22 PM   #79
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    Re: Small Fiber Neuropathy#2 SKIN BIOPSY?

    I had an abnormal QSART and will now be set up for a (some) skin biopsy(s). Do you get one biopsy or do you get many when you have this done?

     
    Old 03-19-2009, 04:40 AM   #80
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    Re: Small Fiber Neuropathy#2

    Regarding the skin biopsy, for me they did the left leg in 3 spots, ankle thigh and hip. Even though you may have pain in various parts of you body, they don't take a sample in each spot. My Neurologist said that if you have pain there, then you have the neuropathy there. It's a complicated illness that I find a lot of people don't understand. I'm not sure I totally do.

    I had a strange thing happen yesterday. I went for a short walk with my dog last evening and half way through the walk my legs became extremely itchy. It was unbearable. It may have been the cold, but it really wasn't too bad out last night. It sent me to tears, because it seems that there is no peace with this process. It unpredictable. Has anyone else expierienced this? Sometimes I think I may have other stuff going on. Like does any one have Tinnitus? Or Insomnia? I think I'm just losing it. My Neurologist kept just wanting to refer me to other specialists, he would never answer whether any of this was connected to Small Fiber Neuropathy, and there seems to be limited information out there. My Neurologist said, "see you in a year" they will re test for the underlying conditions once again. Needless to say, I will not be seeing him again. I found the doctors to be cold and uncaring. It's like an assembly line.....Dx. give them meds...send them out the door.

    Guess I'm just frustrated with this whole damn thing.

     
    Old 03-19-2009, 01:17 PM   #81
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    Re: Small Fiber Neuropathy#2

    Hi dianne. I am so glad that you finally got the biopsy done. I am with you- this disease is way more complicated than I thought when I was diagnosed. How long will it take for the results and what will they do then? I have had a terrible experience with drs as well and my chart with over 20 yrs of history was sent out of the office and lost. How could they do that?? The neurologist has forgotten to make the appointment I need with the Diabetes dr and all of this loses valuable time while I suffer. I get really strange things that happen without explanation as well like the tinnitus. The abrupt changes in temp I cyle thru drive me crazy as well as the constant nausea. I have scratched my skin raw on my shins from constant itchiness and get 3 hours of sleep a night if I am lucky. I am giving up on the neuro, he just sits in his office when I go and flips thru the chart. I am uncomfortable with his silence and babble my way until I feel so emabarrassed! I have no help from medications and when I am out of the only drug I do have, Tylenelo 3, I am without any help at all. I am not not willing to take anymore seizure drugs so there isn't much else I can take according to the dr. Have enough T3's fro 2 days!
    I really do feel for you dianne . The frustration is overwhelming! This has altered everything in my life. What else can we do?? We see the Dr's, take the meds and be good patients cause we are scared we won't get any help at all. I am giving up on the medical profession. I am trying to do it without help from meds and by eating right, getting rest and keeping stress as low as I can but it isn't working to ease the pain of SFN. Had acupuncture but my feet are too sore for anyone to touch! Not sure where to turn now but I am rooting for you!

     
    Old 03-19-2009, 06:50 PM   #82
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    Re: Small Fiber Neuropathy#2

    Hello to all writers and listeners,
    I hope all of you are doing as best you can with your fight against SFN!
    It's been several days since I last wrote due to the fact that I was just to tired to write. Have been very busy at work and the muscles are sore and the SFN is alive. I do notice that I can tell the difference between the SFN and the sore muscles. It's like one floats on the other making for an interesting concept. I will admit that I did take a tylenol #4 a few minutes ago together with my other meds to take some of the edge off these pains. Carol said that she was unable to wake me again last night after several tries. This was the same thing happenning just after I had my TIA (mini stroke) in 2003. It seems that we all have medical "baggage" to go along with SFN. Have any of you met anybody that has SFN or do we only know of others here on these writings? I have not met anybody, that I know of, that has this disease. With all the writers and listeners here, you would think that we would bump into someone that is toremented as we are.
    I welcome any and all to write, or to listen. Go ahead and write, it will get easier as you do and you have experiences or information that can help us all.
    I'm tired again and must rest. I will write again later.
    Will

     
    Old 03-19-2009, 08:35 PM   #83
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    Re: Small Fiber Neuropathy#2

    Hello All,

    It continues to be rough dealing with the SFN but I am making progress dealing with the pain on an emotional level. After 13 years of this, I know it will take time. I've been seeing a pain psychologist who has been helping me a lot. We've been working on relaxation techniques through meditation. It has helped believe it or not. I do admit that it's weird at first, but it does get easier. I'm doing slightly better at taking control of this pain, but again it's an incremental process. I'm still taking the Cymbalta (which has helped the depression) and my fair share of Vicodine. Without it, I don't know how I'd cope. I hope one day to have enough control over the pain where I don't need to take any medicine. We'll see. I'm going to see my nuro next week to get results from my blood tests. Maybe there is an underlying cause to my SFN?
    Will, I do not know anyone else who has SFN. It would be interesting to meet someone in person who also has the disease. We could trade 'war stories.' haha
    Hang in there everyone!

    Jason

     
    Old 03-19-2009, 11:54 PM   #84
    Bobby Flay
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    Re: Small Fiber Neuropathy#2

    Hey everyone! I have not posted in a couple of days, just busy trying to keep my job with all of my ailments. I think it was Will that I read asking if we had met anyone who has sfn besides those of us who are on this forum. As a nurse, I believe that I have met a couple of folks who have it. One guy who was 20 years old and sees the same doctor that I do so no testing was ever done. He is in a wheel chair and can barely use his hands but he has a good attitude and he tries really hard. I met a lady who is about my age, 41, who was in bed 24/7 and in constant pain. She had not worked in about 20 years but the guy was still working and doing every little thing he could. He was trying to get on disability but was turned down of course and so he keeps working any odd job that he can. I think the key difference between these two was attitude. This lady had given up, was mad all of the time and just laid in bed wasting away. I read Montel Williams first book something about moving mountains. That guy is way strong, with a really good attitude and MS is what he has but it seems slower growing than sfn. Any way he said in his book is that the key is to keep moving, doing whatever stupid little thing you can do, he said even if all you can move is your little finger, than do that as much as you can. I hope that helps a little bit.

    Jason, getting closer to my appointment and I am scared to death. Please say a little prayer or a little thought, which ever you believe. I have called twice to see if I can get in earlier with no luck. Seems that I am having some problems with memory over the last 2 weeks. Anybody else have that symptom or is it just me? Jason, how did you puncture test turn out? I am anxious to hear all about it. How is acupuncture going for Diane?

    I think about all of you every day and I keep hoping for all of us that we have as little pain as possible on this day. I hope we all keep each other in our thoughts, you never know, a higher power might just be listening and grant us this favor. You all mean the world to me, I think you have saved me, at least for now. You are my heroes. Jason, you especially.

    You know, I would love to know about all of you, not just the bad stuff. Who all has children and how many, how old are they? What do you all do for a living or what did you do? What is your number one hobby, favorite thing to do? What is your favorite place? What is your favorite food? I think maybe it would be good to think about something else besides pain. I do want to know all about you, my friends.

    Bobby

    Last edited by Bobby Flay; 03-19-2009 at 11:59 PM.

     
    Old 03-20-2009, 12:32 AM   #85
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    Re: Small Fiber Neuropathy#2

    Hi

    Has anyone tried CBT from a psychologist to help cope with SFN. I have just started but
    I'm a bit doubtful about it. I also take the usual meds Cymbalta just now.

    Thanks

     
    Old 03-20-2009, 01:11 PM   #86
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    Re: Small Fiber Neuropathy#2

    Daisy, Well said. I know lots of you have compassionate Neurologists, but I agree with Daisy. For now I'm taking an MD break. Going holistic, organic, etc.
    I have to try this route. Thanks for someone else finally telling me that Insomnia and Tinnitus may be part of this process. It was driving me crazy that I was getting no answers. As for Cognitive Behavior Therapy, well who knows. I think your mind and thoughts can play a huge part in pain and health in general. I'm considering it myself, only because I struggle with anxiety and depression. We all have to learn to cope with this the best we can and it may be a different approach for us all. I would never tell anyone to stop medication if it what brings relief. For me , part of the pain in all of this is that my life was in a real personal turmoil when this SFN came upon me. So, I have a lot of guilt that my personal stress and choices are part to blame why I am now sick. I wish I could turn back the hands of time.

     
    Old 03-21-2009, 05:10 AM   #87
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    Re: Small Fiber Neuropathy#2

    To Answer Will's question, no I have yet to meet anyone with this condition (SFN) let alone anyone ever even hearing of it. It sometimes overwhelming. In my case they can't find the cause, so I feel like a ticking time bomb. I really need to get a handle on the emotional aspect of this, because that is taking a huge toll. To let you know a little about me. I'm a wife. married almost 30 years. I have 4 daughters, which have been my greatest accomplishment. I'm an RN, but I haven't worked in that field in over 10 years. I sold Real Estate for the past 6 years, but I'm not sure if I will stick with that. I have a 2 year old grandson. I really have a supportive family. My biggest issue right now is acceptance of this disease and how to live a full and happy life. I've been fighting to stay off Meds, but this deppression may force me to concede. It's hard to fight a mental and physical battle.
    I'm 48, and approaching menopause, so that isn't helping me much. . I know I'm not thinking logically, fears and emotions are clouding my view. I hate where I'm at right now. Sleeping is an elusive pleasure, so that is not helping to cope. Thanks all for listening..sometimes that's just what a person needs.

     
    Old 03-21-2009, 12:25 PM   #88
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    Re: Small Fiber Neuropathy#2

    You know- now that you mention it- I don't know of anyone either that has had a diagnosis of SFN. I wonder if most people are told they have PN and no one investigates it much further. I think it is downright weird that we haven't met other sufferers. I too am a mother of 4, a grandma of 3 and a retired nurse and then went on to a lab tech career which I can no longer work at. I have RA as well as pre-diabetes My children have all been gone from home and are all leading happy lives. I am in a wonderful marriage and the future should look rosy for me. I really don't understand how all of this pain came to be. It came on gradually and now after 3 years shows absolutely no signs of easing up. I do not have depression issues but I do have issues with the scariness of perhaps not being able to walk soon. I want to work, I want to take my dog out for a walk I want to run after my grandkids and dance with my husband but all of that is being taken away from me by this damn disease. And no one has any answers for us. I applaud anyone that can carry on a somewhat normal life. I plan my days around being able to do one task outside the home. If I need to go to the bank, then that is all that gets accomplished that day. I walk with a cane now- does anyone else have walking issues like the feet just won't do as you want them too? are they numb as well as burning? Do you have balance issues and are scared to walk alone? Does it feel like someone crushed your toes, broke your ankles and then set your feet on fire? and it never stops!!? And why won't a pain medication work for me?
    Will I have to live forever with two pillows separating my husband and I in bed because the thought of him accidentally hitting my feet sends me reeling. Does anyone know of any new pain meds in the near future? Other than anti-seizure meds and anti depressants, what do you take for pain? Also questioning aspartame as a trigger.
    Thanks for listening.. I appreciate it!
    Trying to do it med free also but having troubles too!!

     
    Old 03-21-2009, 08:38 PM   #89
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    Re: Small Fiber Neuropathy#2

    Bobby. Good luck with your puncture test. Like I said, it's non-evasive and painless. I had my biopsy done a little over a month ago. It was positive for SFN. After 13 years with no diagnosis for my pain, it was a relief to finally put a name with the symptoms. I will think of you for sure and I'm optimistic you will get through it ok. Please let me know how it turns out.
    I'm not having any problems with my memory at this time, so I'm happy about that. Have your brought up the memory loss to your doctor yet? You should for sure.
    Thanks for the kind words Bobby. I just say and do what I feel is right. At the end of the day we're here for each other, so if anything I say helps you, I'm truly grateful and it's makes me happy to be helping other people.
    No kids here. My fiancť and I do want them though but that will be a few years in the future. We're in the process of buying our first home. Itís an xciting and scary process at the same time. I love baseball, golf, playing poker, movies, and books. I read a lot everything but thoroughly enjoy war history and politics. Lately Iíve been reading books about the recent war in Iraq. Interesting stuff! I work at TD Ameritrade and manager a team of 12 associates. I've been with the firm for 13 years and I'm very happy there. There's a little about me. =)

     
    Old 03-21-2009, 08:45 PM   #90
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    Re: Small Fiber Neuropathy#2

    Quote:
    Originally Posted by dianne04 View Post
    Regarding the skin biopsy, for me they did the left leg in 3 spots, ankle thigh and hip. Even though you may have pain in various parts of you body, they don't take a sample in each spot. My Neurologist said that if you have pain there, then you have the neuropathy there. It's a complicated illness that I find a lot of people don't understand. I'm not sure I totally do.

    I had a strange thing happen yesterday. I went for a short walk with my dog last evening and half way through the walk my legs became extremely itchy. It was unbearable. It may have been the cold, but it really wasn't too bad out last night. It sent me to tears, because it seems that there is no peace with this process. It unpredictable. Has anyone else expierienced this? Sometimes I think I may have other stuff going on. Like does any one have Tinnitus? Or Insomnia? I think I'm just losing it. My Neurologist kept just wanting to refer me to other specialists, he would never answer whether any of this was connected to Small Fiber Neuropathy, and there seems to be limited information out there. My Neurologist said, "see you in a year" they will re test for the underlying conditions once again. Needless to say, I will not be seeing him again. I found the doctors to be cold and uncaring. It's like an assembly line.....Dx. give them meds...send them out the door.

    Guess I'm just frustrated with this whole damn thing.
    Yeah, the "see you in a year" thing is non-sense. I would get any test that doctor did on you and go see another Neurologist that is set on helping his/her patients. My legs do itch sometimes. I've never had anyone tell me it's related to the SFN though. I'll ask my nuro when I see him this week and get back to you. It could also be from the meds I'm taking. I've read the Vicodin can make a person itch. Good luck Dianne. Please keep working hard to get the care you deserve

     
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