sitlos1971
01-25-2009, 01:56 AM
Does this sound familiar to anyone:
Last March started with burning, aching feet after exercise (running). Then it started spread to my hands. Intermittent burning, numbness, aching pain. Eventually couldn't walk or stand for very long without aching pain. I get pins and needles MUCH more quickly than I should (if I sit on my knees). Pain has now spread to my skin. Lower and upper back, back of arms, back of legs and buttocks feels like a really bad sunburn. Was intermittent but now is fairly constant. Usually if pain is bad in one area, then it is less painful in other areas?? But not always. I'm 37. My Dad has the exact same symptoms - his started when he was 47 (he's had it for 14 years and STILL has no answers). I've had an EMG, MRI and tons of blood tests. All normal.
Not sure what to do now?? The more forums I look at the more I see other people with similar symptoms or other symptoms who've all gone to countless doctors who are mystified.
Can anyone at least suggest the right type of doctor to go to next? I've posted here before but have not gotten any answers. So if you can offer any suggestions, please do. I want to be able to be a good husband to my wife, a good father to my kids and be able to continue working full time to support them.
Thanks for any advice or next steps you can offer.
Last March started with burning, aching feet after exercise (running). Then it started spread to my hands. Intermittent burning, numbness, aching pain. Eventually couldn't walk or stand for very long without aching pain. I get pins and needles MUCH more quickly than I should (if I sit on my knees). Pain has now spread to my skin. Lower and upper back, back of arms, back of legs and buttocks feels like a really bad sunburn. Was intermittent but now is fairly constant. Usually if pain is bad in one area, then it is less painful in other areas?? But not always. I'm 37. My Dad has the exact same symptoms - his started when he was 47 (he's had it for 14 years and STILL has no answers). I've had an EMG, MRI and tons of blood tests. All normal.
Not sure what to do now?? The more forums I look at the more I see other people with similar symptoms or other symptoms who've all gone to countless doctors who are mystified.
Can anyone at least suggest the right type of doctor to go to next? I've posted here before but have not gotten any answers. So if you can offer any suggestions, please do. I want to be able to be a good husband to my wife, a good father to my kids and be able to continue working full time to support them.
Thanks for any advice or next steps you can offer.
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anwise67
01-25-2009, 09:34 AM
Hi. You really need some answers so I'm going to try to help. My SFN started the same way yours did. After exercise(walking two miles) my feet would burn and in appearance were red and swollen. The EMG/NCV, blood test, etc. will not show up SFN. You need to get all of your test results and get ready to go to a doctor that can help you. Look up the company Therapath Laboratories(HQ in New York) and get their phone number. I talked with a lady named Elizabeth. If you call them then they can fax you a list of physicians who perform the skin biopsy in your area. You have to tell them that is what you want!! Be prepared to travel. I take a 5 hour trip one-way to see the neurologist that did my skin biopsy. These doctors will recognize your symptoms and if it is not SFN you need to know that as well. In your earlier post you said that you wanted to do this without medicines b/c of how pain pills had affected your father. There are more options out there now for you and for him. I was where you are, not wanting to take meds, but with this illness that is just not possible. I hope this helps. allie
2morrow
01-26-2009, 05:37 PM
sitlos - I have been following the sfn threads because I too have widespread neuropathy - I'm 48 and this all started last June (08) - I was physically fit - no pre-existing health conditions, no drugs - just hit by a wall of stress that led to strange CNS sensations and episodes of acute pain. So perhaps the onset is unlike others on this site but the aftermath is very similar. I've lost 20pds, nervous system has shorted out - feel like I can't stand up or walk somedays. I have yet to receive a Dx - it may be a complication of shingles... but it has definitely been exacerbated by Neurontin (Gabapentin) and by an appalling attitude of indifference and apathy from the medical system here in this province. I am essentially self-diagnosing and self medicating, and I am drawn to this sfn community because of the similarities in symptoms and the struggle for Dx and treatments. But more than that - this group has articulated the issues so succinctly. Everyday I am presented with new and disturbing sensations - I try to journal it - to retain my sanity but trying to explain it and survive it - a nightmare.
sitlos1971
01-27-2009, 03:00 PM
Hi 2morrow -
It seems were in a similar boat. I agree, one of the hardest things about it is feeling so alone and many doctors don't want to deal with you - or even explore. It seems strange that they wouldn't WANT to figure things out beyond their own knowledge, not just hope you fit into a neat and tidy diagnosis that they can then throw some medications at. VERY frustrating. So like you, I am trying to self diagnos and do this myself.
I will pass along anything I find helpful - are you living in BC?
I've found another site that might be helpful: http://www.rsdcanada.org/parc/
check it out - not everything coincides with my symptoms but maybe you may find something to add to your "aresenal".
I take hope in KNOWING that I can figure this out and so can you! Being persistent will pay off and even if there is no "cure" I am confident that we will be diagnosed and can understand how to "live" with this - truly LIVE, not just survive. May you find peace in your body - even if just for today.
It seems were in a similar boat. I agree, one of the hardest things about it is feeling so alone and many doctors don't want to deal with you - or even explore. It seems strange that they wouldn't WANT to figure things out beyond their own knowledge, not just hope you fit into a neat and tidy diagnosis that they can then throw some medications at. VERY frustrating. So like you, I am trying to self diagnos and do this myself.
I will pass along anything I find helpful - are you living in BC?
I've found another site that might be helpful: http://www.rsdcanada.org/parc/
check it out - not everything coincides with my symptoms but maybe you may find something to add to your "aresenal".
I take hope in KNOWING that I can figure this out and so can you! Being persistent will pay off and even if there is no "cure" I am confident that we will be diagnosed and can understand how to "live" with this - truly LIVE, not just survive. May you find peace in your body - even if just for today.
Aussie100
01-27-2009, 05:20 PM
The best type of doctor to see next to give you the best chance of finding the cause is a neuro that specializes in neuropathy, who ever sent you for an emg or nerve conduction test for typical small fibre symptoms sounds pretty useless, the first test should have been a skin punch biopsy if available or quanitive sensory testing if not, i had the same trouble when i first got small fibre symptoms most i seen didn't have a clue, it was very dissapointing to say the least.
good luck
Aussie :)
good luck
Aussie :)
2morrow
01-27-2009, 05:31 PM
yes we could help each other with local resources. I just wondered how extensive was your mri? Not taking any drugs at the moment - still recovering/detox'ing from Neurontin (horrendous side effects). Disillusioned with western medicine - I booked 1st acupuncture appt. this week.
cream9518
01-29-2009, 10:59 AM
Have almost same symptoms, especially burning legs and buttocks and tingling. Seen neurologist and had all tests, last one a skin biopsy which showed a damaged nerve ending. Been diagnosed idiopathic neuropathy (am not diabeticS) and which comes down to polyneuropathy, a diffuse neuropathy that affects all the nerves. Have tried all kinds of medications with no avail. Am taking lyrica, percocet for pain, and sleeping pill (burning of butt is horrific while trying to sleep). My last resort is trying the ReBuilder and with the help of Cole my advocate we are trying to see which is the right level for me. Dont know if you are familiar with this machine, which is a stimulator, and I will try everything that is to offer to get rid of PN. A prayer for you, and a prayer for me would be appreciated. Hang on there.
2morrow
01-29-2009, 06:50 PM
Aussie, in one of your other posts you mention that nerves regenerate (1mm per day... an only under perfect conditions...provided there isn't cell death...). I gobble up all these tidbits of info. Wanting you to elaborate on those ideal conditions, afraid to ask how you determine if there was cell death. And I was also made hopeful by one of your other remarks about the 5 year healing process for your feet/legs. This is a significant healing experience that gives others hope that healing may be a slow process but it is happening (and that sometimes you've got to ignore the medical journals definition of chronic). I 've decided rather than be frightened by new and wierd CNS sensations that I'll consider them as "attempts to connect" and a sign of regeneration.
cream9518
01-30-2009, 10:20 AM
let me know about the acupuncture thanx
2morrow
01-30-2009, 03:36 PM
Acupuncture update. I should open by stating the obvious. I like you have such a raw and burnt out central nervous system, I feel like I have no threshold for more pain. This is why I resorted to pharmaseuticals. While on those drugs my pain changed and spread everywhere. I'd swear the pain and psych meds contributed to my hypersensitivity, but we'll discuss that another time. The idea of acupuncture needles just seemed unbearable. Yet I have been trying to get started on this therapy for well over 4 months. The Chinese Doctor had me complete a health form, checked my tongue, reflexes, pulse at several points, and had me lie face down. Because I have developed head to toe neuropathy - she inserted needles in my scalp, neck, down my spine, back of knees and ankles. Then attached a wire to send a low voltage current to some of these needles. Plus turned on a TDP electromagnetic health lamp targeting my feet and legs. For a hypersensitive individual this was an intense treatment - I was aprehensive and some needle sites were uncomfortable. I tried to breath deep and relax but moaned, wept and ask for adjustments during the treatment. The needles were in 20mins - the current ran for only 10 mins. She applied a herbal tincture to my skin. It took me a while to pull myself together, I was lightheaded. But I felt different, like the volume button was turned down. I slept heavily especially this morning. I'll keep you posted. It's early in the process to judge but I'm continuing with it. I will not however allow the TDP lamp to be used. In Neuropathy it's really not appropriate - I just didn't know anything about it until I researched it today.
Aussie100
01-31-2009, 01:47 PM
Aussie, in one of your other posts you mention that nerves regenerate (1mm per day... an only under perfect conditions...provided there isn't cell death...). I gobble up all these tidbits of info. Wanting you to elaborate on those ideal conditions, afraid to ask how you determine if there was cell death. And I was also made hopeful by one of your other remarks about the 5 year healing process for your feet/legs. This is a significant healing experience that gives others hope that healing may be a slow process but it is happening (and that sometimes you've got to ignore the medical journals definition of chronic). I 've decided rather than be frightened by new and wierd CNS sensations that I'll consider them as "attempts to connect" and a sign of regeneration.
Hi, what i mean by perfect conditions is whatever that has been assaulting the nerves has stopped completely, like elavated blood sugars, alcohol, drug caused neuropathy etc, the cause or causes must be found and ceased, this is the only time that the peripheral nerves have a chance of regenerating.
The attempts to reconnect for me was many, many bouts of flaring of symptoms, over a long period before i noticed the flares were slightly less potent and less often and that went on for a few years, eventually they faded away completly, thank god.
i hope your cause is found
Aussie :)
Hi, what i mean by perfect conditions is whatever that has been assaulting the nerves has stopped completely, like elavated blood sugars, alcohol, drug caused neuropathy etc, the cause or causes must be found and ceased, this is the only time that the peripheral nerves have a chance of regenerating.
The attempts to reconnect for me was many, many bouts of flaring of symptoms, over a long period before i noticed the flares were slightly less potent and less often and that went on for a few years, eventually they faded away completly, thank god.
i hope your cause is found
Aussie :)
jeanksatQB
02-02-2009, 07:44 PM
I'm hoping you have discovered some help by now, but if not there is a Dr Stewart at the Lion's Bay Hospital who specializes in neuropathy. Good luck.
2morrow
02-02-2009, 11:09 PM
thanks for the info!
pomalley80
03-05-2009, 09:27 AM
Have almost same symptoms, especially burning legs and buttocks and tingling. Seen neurologist and had all tests, last one a skin biopsy which showed a damaged nerve ending. Been diagnosed idiopathic neuropathy (am not diabeticS) and which comes down to polyneuropathy, a diffuse neuropathy that affects all the nerves. Have tried all kinds of medications with no avail. Am taking lyrica, percocet for pain, and sleeping pill (burning of butt is horrific while trying to sleep). My last resort is trying the ReBuilder and with the help of Cole my advocate we are trying to see which is the right level for me. Dont know if you are familiar with this machine, which is a stimulator, and I will try everything that is to offer to get rid of PN. A prayer for you, and a prayer for me would be appreciated. Hang on there.
Hello Cream 9518.... Cole is the one who helped me. It took a lot of patience for him to deal with my impatience. We adjusted the treatment this way and that way, had some irritations sometimes and extra soreness, but we got through it and thanks to his and the other staff members assistance, I could not be more pleased with the outcome. It has been nothing short of a miracle for me, so I really hope for your sake the rebuilder will work for you.
Hello Cream 9518.... Cole is the one who helped me. It took a lot of patience for him to deal with my impatience. We adjusted the treatment this way and that way, had some irritations sometimes and extra soreness, but we got through it and thanks to his and the other staff members assistance, I could not be more pleased with the outcome. It has been nothing short of a miracle for me, so I really hope for your sake the rebuilder will work for you.
acumen
03-07-2009, 12:35 AM
Hello fellow Neuropathy sufferers,
It was 1998,when I was 48 and at the height of my business career when this damnable stuff struck me down. Completely symmetrical in both feet and ankles, ending with mild numbness in calf region. Horrific burning, and electrical stabbing. I fall down at least once a day.
Naturally, I have been through the mill with docs and meds.....the Neurontin/Elavil cocktail just about did me in. 10 doctors later and nothing has changed---except my ability to deal with the pain. I try and use as little as I can, but my primary doc has written Morphine, Vicoden, and diazapam. Makes it hard to concentrate.
Good luck to all.
It was 1998,when I was 48 and at the height of my business career when this damnable stuff struck me down. Completely symmetrical in both feet and ankles, ending with mild numbness in calf region. Horrific burning, and electrical stabbing. I fall down at least once a day.
Naturally, I have been through the mill with docs and meds.....the Neurontin/Elavil cocktail just about did me in. 10 doctors later and nothing has changed---except my ability to deal with the pain. I try and use as little as I can, but my primary doc has written Morphine, Vicoden, and diazapam. Makes it hard to concentrate.
Good luck to all.
Bobby Flay
03-07-2009, 03:17 AM
Hello fellow Neuropathy sufferers,
It was 1998,when I was 48 and at the height of my business career when this damnable stuff struck me down. Completely symmetrical in both feet and ankles, ending with mild numbness in calf region. Horrific burning, and electrical stabbing. I fall down at least once a day.
Naturally, I have been through the mill with docs and meds.....the Neurontin/Elavil cocktail just about did me in. 10 doctors later and nothing has changed---except my ability to deal with the pain. I try and use as little as I can, but my primary doc has written Morphine, Vicoden, and diazapam. Makes it hard to concentrate.
Good luck to all.
Wow, I can't believe that this has been the cause of my suffering this whole 4 years and I didn't know it because my doc never told me. I fall constantly too. I keep trying to work, I am an RN, I keep thinking that if I give up my job, it is over. I even broke my leg over the summer. I am so shocked that this has been going on for 4 years and I am just now finding this all out and nobody every told me this is what to expect. I would still be in the dark if it wasn't for this forum. I am sure sorry for your suffering. I will bet it is hard to concentrate. I try to only take my Lyrica and Vicoden when I am finished with running my 6 and 8 year old around and after I am done working, of course. I just think I need to be awake during the day, so I just try and suffer through until I am done. My symptoms are on both sides but way worse on my right, I am right handed.
It was 1998,when I was 48 and at the height of my business career when this damnable stuff struck me down. Completely symmetrical in both feet and ankles, ending with mild numbness in calf region. Horrific burning, and electrical stabbing. I fall down at least once a day.
Naturally, I have been through the mill with docs and meds.....the Neurontin/Elavil cocktail just about did me in. 10 doctors later and nothing has changed---except my ability to deal with the pain. I try and use as little as I can, but my primary doc has written Morphine, Vicoden, and diazapam. Makes it hard to concentrate.
Good luck to all.
Wow, I can't believe that this has been the cause of my suffering this whole 4 years and I didn't know it because my doc never told me. I fall constantly too. I keep trying to work, I am an RN, I keep thinking that if I give up my job, it is over. I even broke my leg over the summer. I am so shocked that this has been going on for 4 years and I am just now finding this all out and nobody every told me this is what to expect. I would still be in the dark if it wasn't for this forum. I am sure sorry for your suffering. I will bet it is hard to concentrate. I try to only take my Lyrica and Vicoden when I am finished with running my 6 and 8 year old around and after I am done working, of course. I just think I need to be awake during the day, so I just try and suffer through until I am done. My symptoms are on both sides but way worse on my right, I am right handed.