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    Old 03-15-2010, 07:13 PM   #1
    stargrave
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    SFN Questions.

    If neuropathy alone wasn't enough, this variation, is harder to diagnose, not because of it's test(its accurate and it's there), but because of how much the doctors go away from it, or don't even mention it.

    I was Dx with an Idiopathic(hate this word) "pure motor" neuropathy, after two neuro visits and an EMG/NCV.

    Funny enough cause most of my symptoms were sensorial, tingling/burning/pins and needles/numbness/pain, you know the drill.
    Although I did experienced weakness, and that's what appeared on my tests.

    I thought that "pure motor"=no pain and no funny sensations.

    So they prescribed me Lyrica, which I couldn't handle, because of the dizzies(and at the time I didn't felt any pain to begin with, just numbness and some hot feeling). Changed to a B-Vitamins/Clonazepam combo, that made wonders at the 4th week of it, but not a day before it(take note on this).

    I went to a Fibromyalgia expert, looking for answers, but his appointment, was right in the middle of my best week with this junk, so:

    Blame an pretty normal examination, by him, two by the neuro, where reflexes, pupils, sensitivity, strength, coordination, and pretty much every test there is on the neurological routine examination, was normal.

    So they put the neuropathy in the backseat of my anxiety. Don't get me wrong, I do need support for that too.

    Do you think they could even mention SFN? Not by a long shot, not MRI, not anything else. Not that I'm trying to dig everywhere to find a new disease, I just want to know what caused it, SFN or not, to avoid it in the first place, and to get used to the idea and begin to adapt, as I did with vertigo.

    (Here is the note I mentioned, and my questiona)

    SFN Dx people, and Neuropathic fellows of the board....

    Do your SFN/Neuropathic symptoms come and go? Or Do you have asymptomatic days/weeks? Or you just feel bad all the time?

    Have you found the cause for your SFN, other than diabetes?

    If you do happen to have SFN, treatment is different than the one used in "normal" neuropathy?

    My main, and only suspicion of initial cause, is from a solvent exposure, but there were mixed reactions to this theory, again, because how well I was on the tests, to the point that even the EMG results were questioned.

    That's why I ask how do you look, and not only how do you feel, because I look fine, but feel terrible... And this happened to me with vertigo too, Deja Vu all over.






    .

    Last edited by stargrave; 03-15-2010 at 09:48 PM. Reason: Added content.

     
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    Old 03-16-2010, 09:14 PM   #2
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    Re: SFN Questions.

    Hello stargrave
    You are experiencing the frustrations and pain of an affliction that does it's best to confound most of us who suffer with it. It is my opinion that it confounds our physicians as well!
    My SFN is auto immune, related to my RA, as one of the two neuro's I have seen has diagnosed. I have had EMG's, an MRI of my spine, a CT scan of my lumbar area, acupuncture, B12 injections, reflexology( incredibly painful!), many strange potions to rub on my feet and countless trials of medications. I am no further ahead today than I was when I first started seeing doctors because of this, 5 years ago.
    My days are all pretty much the same, but I know from others that some days can be not as bad as others. So what you are experiencing, the ups and downs are all probably consistent with the unpredictability of SFN. Some feel that weather can be a big influence.
    I could list the number of medications I have tried, the list is long, but nothing has helped. Lyrica, Neurontin, Cymbalta, Elavil, Nortrityline, Lamactil, etc, etc...
    The cost to me has been amazing.
    The one way to confirm SFN is to have a punch biopsy done, but this was not offered to me as my neuro was sure I had SFN and this test would have been costly.
    The many faces of SFN is indeed extremely hard to contend with. Most of us have gone through denial, struggling and finally accepting.
    I really hope you get some answers. Please share with us what you find out. That is the only way we have to help each other. Come here and vent if you need to. We all have at one point or another!
    Best wishes, Daisy

     
    Old 03-16-2010, 10:44 PM   #3
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    Re: SFN Questions.

    Quote:
    Originally Posted by daisymaegrif View Post
    Hello stargrave
    You are experiencing the frustrations and pain of an affliction that does it's best to confound most of us who suffer with it. It is my opinion that it confounds our physicians as well!
    My SFN is auto immune, related to my RA, as one of the two neuro's I have seen has diagnosed. I have had EMG's, an MRI of my spine, a CT scan of my lumbar area, acupuncture, B12 injections, reflexology( incredibly painful!), many strange potions to rub on my feet and countless trials of medications. I am no further ahead today than I was when I first started seeing doctors because of this, 5 years ago.
    My days are all pretty much the same, but I know from others that some days can be not as bad as others. So what you are experiencing, the ups and downs are all probably consistent with the unpredictability of SFN. Some feel that weather can be a big influence.
    I could list the number of medications I have tried, the list is long, but nothing has helped. Lyrica, Neurontin, Cymbalta, Elavil, Nortrityline, Lamactil, etc, etc...
    The cost to me has been amazing.
    The one way to confirm SFN is to have a punch biopsy done, but this was not offered to me as my neuro was sure I had SFN and this test would have been costly.
    The many faces of SFN is indeed extremely hard to contend with. Most of us have gone through denial, struggling and finally accepting.
    I really hope you get some answers. Please share with us what you find out. That is the only way we have to help each other. Come here and vent if you need to. We all have at one point or another!
    Best wishes, Daisy
    Hi Daisy, thanks for your reply.

    This is a tough as nails cookie, that even when it's diagnosed, it's quite hard to deal with.

    Add the anxiety caused by this junk, and you're in hell.

    Now my anxiety is as big trouble as my neuropathy, add to this the fact that most of the medications used for both conditions have their own sorts of issues, from side effects, to withdrawal stuff... It took me three years to conquer vertigo(another ugly son of a gun), and two days on amitriptyline got me back to dizzyland.

    I asked how does everyone is doing because I didn't started with pain, I really started with numbness, some burning sensation and weakness. then the pain came in, and well you know the drill.

    Fortunately for me, I've managed once to get rid of it with B-12 and Clonazepam, and because of my doc telling me that it was better for me to change from benzos to SSRI's, I got myself in trouble again.

    I'm even going to check on the shrink to deal with this, because, both me and my doctors detected a pattern... That took me several times to the ER room. Even before this junk got me, obviously, because anyone experiencing any kind of neuropathy has all the rights to run to ER every time he/she wants to, period.

    The thing is that, one of those trips was when I began my treatment, and I was numb, and in some pain, but when my fake hear attack got me, i was so scared that I "forgot" my neuropathic symptoms.

    So it could be typical of SFN unpredictability, or I'm worsening it with my anxiety, or my SFN is a "little one", or I'm just simply mad...

    In any case, the punch biopsy should be a standard, and also a more affordable test, that could save us a lot of time and anxiety.

    I hope someday we can achieve a real cure from this, or at least something to manage it to a "I can get on living without wanting to die" level, to carry on.

    Best of luck in your quest, and a painless day for everyone.

     
    Old 04-05-2010, 08:53 AM   #4
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    Re: SFN Questions.

    Even if the biopsy doesn't show neuropathy, you may still have it. I had a dermo do a biopsy but he took skin from my chest because my hands and feet were so tore up from itiching. I had up to 10 open sores at one time. Thankfully after two months on antibiotics the sores are healed and the gabapetin seems to slow down the itching. At the mayo clinic they did a thermoregulatory sweat test, and it showed distal sweat reduction. I had normal EMG's and a normal biopsy even though I had sfn. Let us know how things went for you.

     
    Old 04-05-2010, 09:07 AM   #5
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    Re: SFN Questions.

    hi stargrave.
    The neuro I saw at Mayo said the latest theory on ideopathic neuropathy is that it may be caused by a virus. Hopefully some day they can isolate it and have a blood test for it. Do you remember any flu virus's that were severe or strange. In 1993 I had one that turned the bottoms of my feet and the palms of my hands bright red, and the skin peeled. I was so sick that when my fingernails grew out there were dents from the time of my illness. I told the neuro about that and she said that could be the cause, they just don't currently have a test.

    My smytoms go from "it sucks" to "I can't stand it another second". I don't think they ever really go away , my tolerance on some days is better than others. I can have a day where the pain is worse than usuall but I handle it better. Back when the drs were just saying that my symtoms were pschosymatic I used to joke with my husband that my imagination was REALLY fired up today!!
    Take care!

     
    Old 04-05-2010, 02:47 PM   #6
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    Re: SFN Questions.

    Hi Lori.

    About the virus theory, it doesn't sound wild, because I was exposed to AH1N1 last year due to the outbreak. Can't say I got it but I do got some one or two heavy flu episodes last year.

    I didn't got the shots just because of the fear of something like I'm experiencing right now...

    I'm right there with you feeling sometimes like "I just wanna die" to "Please take me out of my Misery", but some here and there where I feel better, either because I do feel really better, or because I'm getting used to the symptoms.

    I wish I could get all those proper tests like in Mayo Clinic down here, but is practically impossible, so the idiopathic stuff becomes quite more open, so it's really hard to pinpoint either the condition itself, or the underlying cause behind it.

    Anyway, I'll try to endure for the moment, while I see if the new vitamins cocktail does the trick.

    Thanks for your post, ant the best for all.

     
    Old 07-18-2010, 11:33 AM   #7
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    Re: SFN Questions.

    Stargrave, I have had full body SFN since 1999 & went undiagnosed for 2 years until neuro at OSU in Columbus, OH saw me and knew instantly what I had. He has written articles about SFN and how to diagnose it. He came up with the tests to discover if a patient had SFN. He said it is caused by a Bacteria that has attacked the Small nerve fibers & they cannot be repaired only dealt with. His article says relief for SFN patients can be as little as 30% up to 55% but so far he hasn't found the combo that will help any better than 55%. He is still researching it. Last time he emailed me he suggested a change in meds. cause I don't live close to Columbus & alot of drs. know nothing about SFN.
    He is one of the heads of Neuro at OSU & developed the 2 long days of testing that I had so I wouldn't have to have a punch biopsy. I had a lot of autoimmune tests, sweat tests, EEG, MRI & CT scan during those 2 days.
    Every couple of years I am put on a different anti-seizure med. when they no longer become affective.
    See if your dr. will prescribe any seizure meds for your symptoms. I also take Restoral for sleep. I think that's what it is called & can finally get about 4-5 hrs. of sleep each night. I hate to wear shoes or clothes, but out in public I have to so there is no getting around living with the pain.
    Good luck, I hope you get a bit of relief soon.
    KaP

     
    Old 07-18-2010, 10:29 PM   #8
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    Re: SFN Questions.

    Quote:
    Originally Posted by KaP View Post
    Stargrave, I have had full body SFN since 1999 & went undiagnosed for 2 years until neuro at OSU in Columbus, OH saw me and knew instantly what I had. He has written articles about SFN and how to diagnose it. He came up with the tests to discover if a patient had SFN. He said it is caused by a Bacteria that has attacked the Small nerve fibers & they cannot be repaired only dealt with. His article says relief for SFN patients can be as little as 30% up to 55% but so far he hasn't found the combo that will help any better than 55%. He is still researching it. Last time he emailed me he suggested a change in meds. cause I don't live close to Columbus & alot of drs. know nothing about SFN.
    He is one of the heads of Neuro at OSU & developed the 2 long days of testing that I had so I wouldn't have to have a punch biopsy. I had a lot of autoimmune tests, sweat tests, EEG, MRI & CT scan during those 2 days.
    Every couple of years I am put on a different anti-seizure med. when they no longer become affective.
    See if your dr. will prescribe any seizure meds for your symptoms. I also take Restoral for sleep. I think that's what it is called & can finally get about 4-5 hrs. of sleep each night. I hate to wear shoes or clothes, but out in public I have to so there is no getting around living with the pain.
    Good luck, I hope you get a bit of relief soon.
    KaP
    Really Interesting information KaP, thanks a bunch.

    I'm on Gabapentin right now with some good days and some really awful ones. I'm going to have a full bloodwork and an MRI at the end of the month.

    Really doubt that down here we have an expert like the one you describe, but this information could be helpful for my future treatment.

    Did the doctor mentioned, by any chance, which Bacteria is the one that attack the nerves in SFN?

    Because just recently a doctor, mentioned the possibility of a Bacteria attacking my body....

     
    Old 07-20-2010, 06:48 PM   #9
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    Re: SFN Questions.

    I haven't posted for a while because things got pretty bad. We lost our insurance and I stopped taking gabapentin for a few weeks. I wasn't on a real high dosage so it didn't make much of a difference for the pain in my arms and legs. But about three weeks after I stopped, I got the most horrible facial pain. It was so bad I actually screamed. It was like a series of electrical shocks that started in one of my back teeth and ended up attacking the whole left side of my face. My husband called our family dr while this was happening. The first time lasted about 45 minutes. It happened every other day for two weeks and I noticed a pattern, it happened about 15 minutes after eating so I basically stopped eating. My dr thinks it was a facial nerve called trigeminal neuralgia. I read up on it and it fits. She said I need to go back to a neuro. Since the three neuros I saw in this state over a three year period literally rolled their eyes and told me the pain was psychosymatic and that I needed to stop bothering them, I certainly wasn't going to them and couldn't afford to go back to mayo where they diagnosed me SFN with a sweat test. My question is, do I really need to go back or does anyone else with SFN have a problem with severe facial pain? Everything I've read about it assiciates it with MS, but since we "know" that I have SFN which is a peripheral disorder, it can't be very likely that I have a central nervous system disorder like MS is it? I've read that the trigeminal nerve is a cranial nerve and therefore a peripheral nerve but I thought that SFN mostly attacked the long nerves. My daughter wants to take me back to mayo and pay for it, luckily she'll only have to pay for the travel expenses because my husband got rehired and we got our insurance back, but if this is just another SFN symptom I"d like to save her the money. Now that I'm back on high doses of anti seizure meds I haven't had an "attack" for a few weeks. Any advise?

     
    Old 07-23-2010, 10:28 AM   #10
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    Re: SFN Questions.

    I don't have the medical knowledge to tell you that what I'm going to say is the truth, but from what I've read, and experienced I'll say that:

    - Neuropathy in any presentation is a hard nails, hard to diagnose, hard to treat condition. We usually have to take STRONG drugs just to cope with the symptoms.

    - You took Gabapentin, and stopped it for several weeks. Both from what I've read and experienced(once with clonazepam) there is a STRONG withdrawal symptom when you suddenly stop this kind of medication for whatever the reason, we're like junkies.

    This kind of medication affects your CNS, and sometimes, like it happened with SSRI's to me, the cure is worst than the disease, this are strong drugs we're taking, remember that.

    What I'm trying to say here is that your pain could be a side effect of the sudden withdrawal of Gabapentin.

    - Now back on the condition itself, for an unknown reason to me SFN is often more associated to Autonomic Neuropathy than a Pure Motor Neuropathy condition is. In autonomic your hear, bladder, and sometimes other kind of nerves can be affected. So this could be also happening, and there are tests for this. The "sweating test" that's usually done to diagnose SFN shows an c involvement of Autonomic dysfunction(temperature adjustment).

    - Finally, as it was in my case where, besides my spread fasciculations, that I've learned, indicate both motor issues(which I have), anxiety and BFS, I got a clonic thumb movement(the difference with fasciculations it that it's a rhythmic movement), which could be either a nervous tick, or something that indicates Brain involvement.

    Any facial movement/pain could indicate this, and it's rare in Peripheral Neuropathy, but If you already got an MRI it could be hard to have something there that was left undiagnosed.

    On the other hand it you haven't got it, like me, get it(I'm getting one on August). This will rle out anu condition there including(in most cases) MS.

    Back to the Gabapentin issue(my suspicion), since it's use, withdrawal and/or interaction with other drugs can cause CNS symptoms, and since you're reporting that taking the med has prevented a new attack, I do believe that it was more a withdrawal effect than any other issue.

    In any case pay attention to your symptoms to see if there is any other kind of CNS issue, that could require further examination. If that's not the case, just try to get sure that you don't run out of Gabapentin.

    Best.

     
    Old 07-31-2010, 10:56 AM   #11
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    Re: SFN Questions.

    Hello Stargrave, as I mentioned in an earlier post, my sfn started with Wegeners, which is a very rare disease. Although I am in remission, the sfn persists, and has gotten worse.I have a buzzing in both of my feet all of the time.The numbness in my index finger is constant. I have pins and needles in my arms, legs, groin, top of head , on and off. I have severe pain upon slightly pressing the skin on most parts of my body all of the time. I think it manifests itself in a variety of ways , and baffles us and our physicians.In my case, the docs aren't sure yet how much of my symptoms are caused by my back issues, and how much of it is caused by sfn. I hope you find some answers, and some relief from your symptoms. It's a difficult path,I know. Good luck

     
    Old 08-01-2010, 04:21 PM   #12
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    Re: SFN Questions.

    Quote:
    Originally Posted by Oliejune View Post
    Hello Stargrave, as I mentioned in an earlier post, my sfn started with Wegeners, which is a very rare disease. Although I am in remission, the sfn persists, and has gotten worse.I have a buzzing in both of my feet all of the time.The numbness in my index finger is constant. I have pins and needles in my arms, legs, groin, top of head , on and off. I have severe pain upon slightly pressing the skin on most parts of my body all of the time. I think it manifests itself in a variety of ways , and baffles us and our physicians.In my case, the docs aren't sure yet how much of my symptoms are caused by my back issues, and how much of it is caused by sfn. I hope you find some answers, and some relief from your symptoms. It's a difficult path,I know. Good luck
    You can't be more accurate in saying that very few MD, and much less us patients, can really get the whole picture of what's going on with any kind of neuropathy.

    And as it's illustrated with your case, sometimes when there's a second condition that could mimic all the symptoms(back issues), it's even more complicated to diangose/treat.

    For instance if B-12 deficit is your problem no back surgery(for example) is going to help, and viceversa.

    It's imperative to try to find out both what is it that you have, and then, the underlying cause.

    Just as an example, about the autoimmune variety, CDIP and SDIP(hope I'm right with the abbreviation here), are pretty much identical but one seems to responds better to some specific treatment than the other.

    And on to the symptoms:

    Pure SFN should not have objective weakness included(Clean EMG), just the sensory issues, well I have both.

    Pure Motor(my supposedly official dx), should not have sensory issues, like pain, tingling, burning, etc... Well, I have both.

    Then talking about it's presentation:

    Unless you can see, or detect(by studies) a really noticeable increase in weakness, pain, loss of function, etc. It's really hard, almost impossible to tell the difference between leftovers of an acute episode that damaged your nerves(like GBS), and a real progression of the condition.

    And even in the best case scenario, where nerves can recover, it takes a while, and until it happens you're getting the whole array of symptoms, at least for weeks.

    Today I got my first(ever) Contrast MRI, I was dubious and nervous about the contrast, but, I agreed, just to have the whole, best picture possible, in order to find the underlying cause of my condition.

    I know that the MRI won't necessarily show this, but it will eliminate or confirm something else like MS(knock on wood).

    Even if that was the case(hope not), it will always be better to know what is the problem, MS or any other, and treat it properly, that having the condition and not doing anything about it, because you just simply don't know that you got.

    Coupled with a new NCV, a complete blood work, all the way from autoimmune stuff to vitamin deficits, there will only be a few ultra-specialized test, like the nerve/skin biopsy, left to complete the known to men test used to diagnose this thing.

    Hope I find the answers soon.

    I'll keep posting the results/revelations.

    Best luck to all.

    Last edited by stargrave; 08-01-2010 at 04:24 PM.

     
    Old 08-04-2010, 06:34 AM   #13
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    Re: SFN Questions.

    Stargrave
    First of all thanks for your reply, I often feel like I'm alone in this nightmare and don't have anyone to talk to.

    Unfortunately the "trigeminal neuralgia" has returned even though I'm taking twice the gabapentin as before. Thankfully the attacks aren't as severe, it's still very painful but not so bad that it makes me scream like before. My dr wants me to go back to Mayo for a follow up appointment because he doesn't feel qualified to make any determinations about it. I have had a sweat test that showed autonomic nerve dysfunction, that was how I was dx'd. I recently had a very high blood presure test where normally I'm very low, I told my dr that I thought it could be from the SFN, should I be going to a cardiologist? Before I was diagnosed I had so many dr's treat me like a nutcase that I am reluctant to see another one unless it's important.
    Also, the summer weather seems to have a big impact on my symptoms. I'm so incredibly weak that just brushing my hair or folding laundry is difficult because I'm having problems lifting my arms and grasping things with my hands. The pain that I normally have is twice as bad, hopefully when summer ends I'll feel better, Also I'm incredibly depressed. This is the first time I've had a problem with depression and yes I have talked to my dr about it and he's going to prescribe something, but I'm actually scared of where my thoughts go sometimes. "THIS IS NOT MY LIFE". Before all of this started I had three jobs and so much energy now I'm just..........pain!! Anyway, I'll let you know what I find out from the neuro at mayo about the facial pain and again, thanks for replying.
    Lori

     
    Old 08-04-2010, 09:54 AM   #14
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    Re: SFN Questions.

    Quote:
    Originally Posted by LoriAllen View Post
    Stargrave
    First of all thanks for your reply, I often feel like I'm alone in this nightmare and don't have anyone to talk to.

    Unfortunately the "trigeminal neuralgia" has returned even though I'm taking twice the gabapentin as before. Thankfully the attacks aren't as severe, it's still very painful but not so bad that it makes me scream like before. My dr wants me to go back to Mayo for a follow up appointment because he doesn't feel qualified to make any determinations about it. I have had a sweat test that showed autonomic nerve dysfunction, that was how I was dx'd. I recently had a very high blood presure test where normally I'm very low, I told my dr that I thought it could be from the SFN, should I be going to a cardiologist? Before I was diagnosed I had so many dr's treat me like a nutcase that I am reluctant to see another one unless it's important.
    Also, the summer weather seems to have a big impact on my symptoms. I'm so incredibly weak that just brushing my hair or folding laundry is difficult because I'm having problems lifting my arms and grasping things with my hands. The pain that I normally have is twice as bad, hopefully when summer ends I'll feel better, Also I'm incredibly depressed. This is the first time I've had a problem with depression and yes I have talked to my dr about it and he's going to prescribe something, but I'm actually scared of where my thoughts go sometimes. "THIS IS NOT MY LIFE". Before all of this started I had three jobs and so much energy now I'm just..........pain!! Anyway, I'll let you know what I find out from the neuro at mayo about the facial pain and again, thanks for replying.
    Lori
    Hi Lori

    You don't have to thank me, we're all companions in here fighting, or at least trying to understand this condition.

    I've had my first contrast MRI and the full blood work. I will have a follow up NCV, to complete the tests before my next appointment. Hopefully I find some answers there.

    I'm not a doctor but after reading so much, talking with the doctors, fellow neuropathy sufferers like you, I'm beginning to build a general picture.

    SFN only means that the smaller fibers(in length) are the ones primarily affected by "something", it might be a virus, diabetes or an autoimmune condition, this last one seems to be the one that, as it is in most cases like Lupus, CDIP, Arthritis, can just be controlled to some extent, but it tends to slowly progress through time.

    Autonomic Neuropathy is closely linked to SFN because the autonomic nerves are small fibers too, that is why a sweat test, like the one you took, is used to diagnose SFN, because an EMG covers just the large fibers(motor).

    If the autonomic fibers are affected, like it seems to be your case, is quite common to have blood pressure issues, so yes the blood pressure stuff you're experiencing can be caused by SFN.

    Heat intolerance, bladder problems, are also common presentations of autonomic dysfunction so It's not a bad idea to see a cardiologist, or even better, if you can see the Mayo specialist, he will run heart tests specifically oriented to detect if your heart is not responding well to changes in body's position, or physical effort. Those anomalies are a sign that the autonomic nerves that control this function in you, are affected.

    Again, thats the vital reason for finding the underlying cause, specially if you got a viral infection like shingles or diabetes or any other known cause for this condition, that can be treated, in order to improve, stop, or at least slow down the progression of the SFN symptoms.

    Now, besides all of the above, if there is not any structural damage causing your "trigeminal neuralgia", without being fatalist or anything, the only other cause that could match all your combined symptoms is MS.

    Heat intolerance, autonomic nerve dysfunction , neuropathic pain and trigeminal neuralgia, are all textbook symptoms of MS.

    BUT(this is a big one) if you have not eye issues(optic neuritis), motor issues(like weakness), trouble speaking, and even more so, if you have already got an MRI and/or lumbar puncture tests to discard this, you can rest assure that MS would not be the case in here.

    Obviously SFN/Autonomic stuff can also cause all, but I believe that the "uncommon issue" here could be the "Trigeminal Neuralgia", because that would mean that a cranial nerve is affected.

    If we can find a bright side to this, specially if there is still not an underlying(not autoimmune) cause detected in your case, finding out what's causing your face pain, could lead to find the cause of your whole condition, something that hopefully can be treated, and could help you to get better in all fronts.

    But here I'm playing Dr. House, and this all is really beyond my amateur medical knowledge.

    Finally on depression and/or anxiety, this all get to us, and we have to fight it
    to prevent them to rule our lives. I feel the same as you, because I can clearly picture my self strong, filled with energy, just the week before this struck me and changed my life completely.

    We have to learn that, even with this, we have to go on, this aint' over till is over so hang in there, we all share both your fears and despair, but also your hope and will to overcome this one day.

    I wish for all of us, that this day comes soon enough.

     
    Old 08-04-2010, 01:11 PM   #15
    davidx
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    davidx HB User
    Re: SFN Questions.

    Hi everyone-

    I am new here and am attempting to read as many posts here as I can in order to learn about other people's experiences.

    There was some discussion regarding the relationship between auto-immunity, bacteria, sfn, etc. Have any of you been tested for lyme disease? I continue to be treated for this.

    Also, in my array of treatments, ivig has had some benefit in helping my symptoms and also increasing the small nerve fiber density (I have had many repeated biopsies which all showed a significant decline which was reversed so far (temporarily? who knows?) with ivig.

    I plan to read more and post more. Sorry to all of you that are living with this dreaded neuropathy. There's no place to hide from it and I know how difficult it can be to live with.

     
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