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    Old 02-08-2009, 08:16 AM   #1
    david1612
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    need help to understand this

    Hi all,
    i have for the last few months incurred various health problems starting with cellulitis,then severe obstructive sleep apnea,then deep veinous thrombosis,then type 2 respiratory failure, then type 2 diabettes, and now im being treated for peripheral neuropathy.
    I am confused now with this latest problem..my symptoms are burning pain in my feet and legs.pain is worse in left leg..blotchy red patches on feet and very purple shins and dark red calfs..also numbness in the last 2 fingers on each hand...and the pain is unbearable..for this im prescribed 12 x 300mg gabapentin per day and 4 x 30 mg diehydracodiene also 8 x 50mg tramadoll and finally 1 x 50 mg amitryptaline.
    i have been placed on the waiting list for nerve conductivity tests.but this could be a wait from 6 to 18 months..this being the case im very confused if my doctor is just putting it on the back burner as they say and not taking seriously the extreme pain im in ,,,the current pain relief i have is not effective.
    so should i be looking elsewhere for diagnosis of these symptoms or is my doctor right in saying that it is peripheral nueropathy ( in my doctors opinion caused by the diabettes ). i jst feel if it is right ,surely waiting up to 18 months for testsim confused at living in a land of limbo.. any advice would be welcome..thnx...david

     
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    Old 03-05-2009, 06:21 AM   #2
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    Re: need help to understand this

    certainly the deep vein thrombosis along with the diabetes can be the cause of the neuropathy, and certainly the symptoms sound like neuropathy. The colorations in your legs are worrisome, sounds like a severe circulation problem. Unfortunately, the nervce conductivity test will only possibly show there is nerve function loss, but beyond that there is really no value to it, as the doctors will say there is nothing they can do anyway short of additional pain medications. It is unfortunate that you have to wait so long for the test. I am so afraid in the U.S. that the course of our government regulation attempts on healthcare will result in the same rationing of services. See my post (you may have to scroll through some pages to find it) titled "anyone have experience with this therapy" to see my story. Best of luck and health to you my friend, P.

     
    Old 03-07-2009, 12:23 AM   #3
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    Re: need help to understand this

    Quote:
    Originally Posted by david1612 View Post
    Hi all,
    i have for the last few months incurred various health problems starting with cellulitis,then severe obstructive sleep apnea,then deep veinous thrombosis,then type 2 respiratory failure, then type 2 diabettes, and now im being treated for peripheral neuropathy.
    I am confused now with this latest problem..my symptoms are burning pain in my feet and legs.pain is worse in left leg..blotchy red patches on feet and very purple shins and dark red calfs..also numbness in the last 2 fingers on each hand...and the pain is unbearable..for this im prescribed 12 x 300mg gabapentin per day and 4 x 30 mg diehydracodiene also 8 x 50mg tramadoll and finally 1 x 50 mg amitryptaline.
    i have been placed on the waiting list for nerve conductivity tests.but this could be a wait from 6 to 18 months..this being the case im very confused if my doctor is just putting it on the back burner as they say and not taking seriously the extreme pain im in ,,,the current pain relief i have is not effective.
    so should i be looking elsewhere for diagnosis of these symptoms or is my doctor right in saying that it is peripheral nueropathy ( in my doctors opinion caused by the diabettes ). i jst feel if it is right ,surely waiting up to 18 months for testsim confused at living in a land of limbo.. any advice would be welcome..thnx...david
    Not sure what this test is, I have had an EMG done if that is similar to what you are having. My neurologist has made me go through this very uncomfortable test at least 4 times. The thing is that small fiber neuropathy effects organs and is not always detected by the nerve conduction testing. Watch out for anything with codeine in it, it is very constapating. You should take it with a stool softner such as colace or dulcolax. I am an RN and we hardly every give codeine any more because of that side effect and when we do give it, we always give it with a stole softner.

     
    Old 03-07-2009, 06:09 PM   #4
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    Re: need help to understand this

    Hi David, you have certainly have had some serious problems, a nerve conduction test reveals whether symptoms are being caused by degeneration of the myelin sheath or the axon of the large nerves, the axon is in the middle of the nerves and the myelon sheath wraps around it, whilst testing, a slow transmission rate and impulse blockage tend to indicate damage to the myelin sheath, while a reduction in the strength of impulses is a sign of axonal degeneration.

    An emg is used to measure motor nerve function, it involves inserting a small needle into a muscle to compare the amount of electrical activity present when muscles are at rest and when they contract, emg tests can help differentiate between muscle and nerve disorders.

    A skin biopsy is good to reveal damage present in smaller fibers, these are the ones responsible for sensation of temperature and pain, in places were this technology isn't available then quanitive sensory testing can be useful but not as good as the skin punch biopsy.

    These are the basic normal tests for neuropathy patients but all these tests don't tell them what is causing the problems only what damage there is to whatever nerves that are involved, I wouldn't be waiting around for a name to the obvious nerve damage your suffering, getting to the cause would be my priority, really need to see a neuro that is a neuropathy expert for proper evaluation.

    best of luck anyway
    Aussie

     
    Old 03-12-2009, 05:39 AM   #5
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    Re: need help to understand this

    Thankyou Pomalley for your reply, i have been in hospital again, so sorry for delay in writing back. i have been back at my doctors also and he is now refering me to the pain clinic, so some good news there, outside of that no other developements.but its still nice to hear from others suffering from what i have or knowlegeable people giving reassuring advice, again thnx for your post and hope you are getting on ok

     
    Old 03-12-2009, 05:45 AM   #6
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    Re: need help to understand this

    Hello Bobby, thnx for the reply, i have discovered the side effects of codiene and i have now stopped taking them , they were doing nothing for my pain anyway so at least going to the toilet is a bit easier now lol..as for the test im waiting for it seems that no amount of complaining to speed up the waiting time has any affect, so i guess im just going to have to rough it out...but on the plus side im being reffered to the pain clinic ..so not all bad news.
    Again thnx for the reply, and i will keep you posted as to how i get along .

     
    Old 03-12-2009, 05:51 AM   #7
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    Re: need help to understand this

    Hello Aussie, thankyou for the reply,im still no further towards recieving the tests, but no surprise to me unfortunatly. i did ask my doctor about getting a skin biopsy in the meantime, but he insists on doing nothing further till i have had the nerve test...at times i could scream with his very casual approach to things..although in his defence lol he has referred me to the pain clinic.
    I will just have to soldier on it seems, i will write back when anything changes...thnx again for the reply your advice is always very welcome .

     
    Old 03-12-2009, 03:54 PM   #8
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    Re: need help to understand this

    If your nerve problems are caused by diabetes as he thinks then keeping your blood sugars as close to normal ranges as possible can help the nerves repair over time, it is a very slow process though but well worth the effort in the long run.
    Some diabetic neuropathy patients have found relief in using supplements, there is two that have shown good results in clinical studies, they are -
    gamma-linolenic acid 480 mg daily
    R lipioc acid at 100 mg daily

    The R lipioc acid can lower blood sugars but doesn't always in everyone, so its best to keep an eye on your sugars when testing yourself after meals.

    Another supplement that can be helpfull for nerve repair is B12 methylcobalamin at 1 to 5 mg daily [on an empty stomache for max absorption] drugs like Metformin that are used for diabetic 2 people can deplete b12 levels further.

    best of luck to you
    Aussie

     
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    Old 03-13-2009, 12:02 AM   #9
    Bobby Flay
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    Re: need help to understand this

    Quote:
    Originally Posted by Aussie100 View Post
    If your nerve problems are caused by diabetes as he thinks then keeping your blood sugars as close to normal ranges as possible can help the nerves repair over time, it is a very slow process though but well worth the effort in the long run.
    Some diabetic neuropathy patients have found relief in using supplements, there is two that have shown good results in clinical studies, they are -
    gamma-linolenic acid 480 mg daily
    R lipioc acid at 100 mg daily

    The R lipioc acid can lower blood sugars but doesn't always in everyone, so its best to keep an eye on your sugars when testing yourself after meals.

    Another supplement that can be helpfull for nerve repair is B12 methylcobalamin at 1 to 5 mg daily [on an empty stomache for max absorption] drugs like Metformin that are used for diabetic 2 people can deplete b12 levels further.

    best of luck to you
    Aussie
    Dear Aussie:

    My blood sugars are so well controlled that if they were any better, I would be considered hypoglycemic instead of hyperglycemic. My A1Cs are 5.9 which is practically unheard of in diabetics. I do not have type II diabetes, I have type I. Meaning, that I am pretty unstable, yet I have kept such good control, remember that I am an RN, they are now skeptical that my small fiber neuropathy is caused by diabetes at all. In fact, they are telling me 100% sure that diabetes is not the cause. I do not have peripheral neuropathy, as is usually the case in diabetes, I have small fiber neuropathy.

    The explanation that I have received is because of my autonomic neuropathy symptoms. I have gastroparesis, I have urinary retention, trouble swallowing, numbness in my tongue and jaw, extreme fatigue. I also have most issues extremity wise on my right side. I have no reflexes on my right side, but only minor numbness to the left. I have constant pain on my right side, my hand and fingers on the right side being the worse. This is absolutely not the symptoms of peripheral neuropathy.

    I am extremely depressed at this point. I feel that there is no hope and as I had mentioned before, I have absolutely no support system other than this forum. I take so many different meds that I have to carry them around in a medium sized tote basket. I have very little hope. I have no joy except in my children. I have lost everything. My boss told me yesterday that she would be willing to put me on as PRN if I wanted, unfortunately, my entire family depends on me for insurance, I also feel that once I quit working, it is all over, an admission of fatality. I have no hope and I am tired of fighting. I am tired of the pain with every movement, every step, every time I sign something for my children's school work. I just am tired.

    At the beginning, I signed up on a forum for Juvenille Diabetes Research Fund, they basically told me that my sugars are so well controlled that they would not consider me a diabetic. This forum finally gives me a place that fits with my symptoms. My doctor, neuro, believes without a doubt that this is what I have. I have nearly all of they symptoms that you all are experiencing. I had previously thought I was just crazy, that the pain was all in my head. I never told anyone about all of it because basically, other people have stress just like me and stress is a relative term. I just shut down because I truely thought I was crazy. I never told my doctor all of the symptoms because I thought he would think I was crazy too and also because I am an RN, I tend to see things differently than most people and I just don't over react. I always thought that it would eventually go away. I think I remember you saying that you have been diagnosed for 1 year. I have had my symptoms for 4 years. That is a very long time to be in pain and lonely and I keep pushing myself because I thought it was all in my head and that eventually it would go away just like you said. It hasn't gotten any better, but much worse. I think that after 4 years you can call it a done deal. I am not going to get better.

    Last edited by Bobby Flay; 03-13-2009 at 12:05 AM.

     
    Old 03-13-2009, 12:16 AM   #10
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    Re: need help to understand this

    Quote:
    Originally Posted by david1612 View Post
    Hello Bobby, thnx for the reply, i have discovered the side effects of codiene and i have now stopped taking them , they were doing nothing for my pain anyway so at least going to the toilet is a bit easier now lol..as for the test im waiting for it seems that no amount of complaining to speed up the waiting time has any affect, so i guess im just going to have to rough it out...but on the plus side im being reffered to the pain clinic ..so not all bad news.
    Again thnx for the reply, and i will keep you posted as to how i get along .
    I personally think that the best oral pain medication is Percocet. It has fewer side effects, is the usually drug of choice and has less Tylenol in it than a lot of other pain medications. Don't hesitate to ask for a drug by name. Doctors and nurses can think what they want but lots of patients do it and I as a nurse, appreciate it when patients suggest certain medications. In my opinion, it is whatever the patients want or need to help them with their pain. However, this medication again, will cause some constipation although, not nearly as bad as Tylenol #3. I would still suggest taking a stool softner like Colace which you can purchase over the counter. It is a very good drug, very gentle, comes in a gel tablet and doctors perscribe this drug over others who are on chronic pain meds 9 times out of 10. Pain team is a wonderful start, they are really good at getting you some relief and that is who I would ask for Percocet from. You are so lucky to be going to them, I would love it if my neuro would send me to them.

     
    Old 03-13-2009, 12:27 AM   #11
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    Wink Re: need help to understand this

    Quote:
    Originally Posted by Bobby Flay View Post
    Not sure what this test is, I have had an EMG done if that is similar to what you are having. My neurologist has made me go through this very uncomfortable test at least 4 times. The thing is that small fiber neuropathy effects organs and is not always detected by the nerve conduction testing. Watch out for anything with codeine in it, it is very constapating. You should take it with a stool softner such as colace or dulcolax. I am an RN and we hardly every give codeine any more because of that side effect and when we do give it, we always give it with a stole softner.
    David:

    One other thing. I don't have any answers to the red patches that you have but the purple would mean a lack of oxygen to that particular area. I get that too on my feet and hands. My neuro explained to me that when you have neuropathy, it can also effect the nerves that control the veins and arteries. Not allowing for good blood flow to that effected area causing blue or purple spots. It just means, at least in my case that those areas are not getting enough blood supply. Every part of your body depends on the nerve cells to tell them what to do and when the nerves are damaged to your veins and arteries than you get the lack of blood flow and then the blue or purple color. I think Aussie already talked to you about controlling your blood sugars. She is totally right. If you can get your blood sugars in the normal range and A1Cs below 6.5 and keep it there, chances are that your neuropathy will eventually improve, maybe even go away for good.

    Robin

     
    Old 03-13-2009, 12:39 AM   #12
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    Re: new symptom, anybody else got these?

    My right side of my face is completely numb. I am also having trouble swallowing. My daughter is is currently in a play about Jack And The Bean Stalk, she is 8. I try to volunteer in all of my children's activities and this is no exception. We have had rehearsals every single night from 6p to 9:30 p. She is so exhausted from attempting to get all of her homework done before it is time to leave in 30 minutes. She also takes voice lessons and acting lessons while my son who is 6, takes just acting and they are both in theater, drama classes one day a week. Plus work, plus keeping up with the laundry and house work it has been a realy bad week.

    I am choosing to keep them home from school tomorrow because they are simply exhausted and I really feel bad for them. My daughter cried all the way home from practice yesterday. I have told her that she can stop any time she wants and it would be fine with me, really. But, she is really in to it and doesn't want to stop. The director yelled at them yesterday, even cursing them and it made me very uncomfortable.

    Needless to say my pain has been bad this week and I am so exhausted that I have slept nearly every day until school lets out. My husband is so angry that the house work has suffered and he really hates it when I nap. Does anybody else have all this stuff going on? Does anybody else's symptoms increase with stress? Does anybody else get this exhausted to the point that they sleep as much as I do? I am so tired now, but can't sleep because of the pain.

     
    Old 03-13-2009, 05:59 PM   #13
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    Re: need help to understand this

    Quote:
    Originally Posted by Bobby Flay View Post
    Dear Aussie:

    My blood sugars are so well controlled that if they were any better, I would be considered hypoglycemic instead of hyperglycemic. My A1Cs are 5.9 which is practically unheard of in diabetics. I do not have type II diabetes, I have type I. Meaning, that I am pretty unstable, yet I have kept such good control, remember that I am an RN, they are now skeptical that my small fiber neuropathy is caused by diabetes at all. In fact, they are telling me 100% sure that diabetes is not the cause. I do not have peripheral neuropathy, as is usually the case in diabetes, I have small fiber neuropathy.

    The explanation that I have received is because of my autonomic neuropathy symptoms. I have gastroparesis, I have urinary retention, trouble swallowing, numbness in my tongue and jaw, extreme fatigue. I also have most issues extremity wise on my right side. I have no reflexes on my right side, but only minor numbness to the left. I have constant pain on my right side, my hand and fingers on the right side being the worse. This is absolutely not the symptoms of peripheral neuropathy.

    I am extremely depressed at this point. I feel that there is no hope and as I had mentioned before, I have absolutely no support system other than this forum. I take so many different meds that I have to carry them around in a medium sized tote basket. I have very little hope. I have no joy except in my children. I have lost everything. My boss told me yesterday that she would be willing to put me on as PRN if I wanted, unfortunately, my entire family depends on me for insurance, I also feel that once I quit working, it is all over, an admission of fatality. I have no hope and I am tired of fighting. I am tired of the pain with every movement, every step, every time I sign something for my children's school work. I just am tired.

    At the beginning, I signed up on a forum for Juvenille Diabetes Research Fund, they basically told me that my sugars are so well controlled that they would not consider me a diabetic. This forum finally gives me a place that fits with my symptoms. My doctor, neuro, believes without a doubt that this is what I have. I have nearly all of they symptoms that you all are experiencing. I had previously thought I was just crazy, that the pain was all in my head. I never told anyone about all of it because basically, other people have stress just like me and stress is a relative term. I just shut down because I truely thought I was crazy. I never told my doctor all of the symptoms because I thought he would think I was crazy too and also because I am an RN, I tend to see things differently than most people and I just don't over react. I always thought that it would eventually go away. I think I remember you saying that you have been diagnosed for 1 year. I have had my symptoms for 4 years. That is a very long time to be in pain and lonely and I keep pushing myself because I thought it was all in my head and that eventually it would go away just like you said. It hasn't gotten any better, but much worse. I think that after 4 years you can call it a done deal. I am not going to get better.
    Hi Bobby, your Ac1 does show you have excellent blood sugar control, I can see why they are skeptical of a diabetic cause as if it was caused by elevated blood sugars it usually presents itself affecting the most distal peripheral nerves first and the symptoms are bilateral, which doesn't seem to fit the bill in your particular case, plus your sugars do seem very good.

    I really do feel for you and wish I had suggestions that may help, I am very lucky in that my PN has completely gone now after 5 years of suffering, I only hang out here to help if I can, but I can well understand all the emotional problems that come with nerve damage, the feeling of isolation, depression, pain and lack of interest off other people and some of the medical community is just horrible to say the least, its the reason I posted that letter to non pain sufferers about trying to understand chronic pain, but none the less, know body truly understands unless your been through it yourself.

    Take care
    Aussie

     
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    Old 03-30-2009, 12:35 PM   #14
    david1612
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    Re: need help to understand this

    Hi Bobby, im a bit concerened about you , you sound very low indeed. but there is always hope.

    When i had to give up work as a truck driver, i thought my whole world had collapsed around me...not only did i have to cope with all the illnesses and new drugs etc , i was now in a situation of being virtualy housebound after being on the road for 14 hours a day.

    I totally resented everone and everything, especialy my wife and kids, and through my twisted line of thought blamed them for all the wrongs in my then
    very empty life.

    But after a year of being at home it is not as bad as i first thought, now i can see that as i may not get better life still has much to offer, i have even started to look at foriegn holidays again (possibly a bit ambitious at present but does wonders for the heart), and also planning family days out, these will be a major source of irritation and discomfort , but through trial and error i will gain some freedom from my present 24/7 housebound situation.

    So why do i now say and think this ? well its simple .just say sod it im not gonna be beaten by this ..getting a good mindset will work wonders.. with all your great advice Bobby you are too valuable to all of us on this forum..so take heart that you are not alone, but infact you are in a great big loving and caring online community where everyone is special not just to the people who post but to all those who are living with us and sharing our daily struggles..when im down i (this may sound corny indeed) play always look on the bright side of life by monty python..if that dont crack a smile then i dont know what will.

    Anyway i have babbled on enough , just be positive and i hope to hear from you soon....david..

     
    Old 05-03-2012, 12:07 PM   #15
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    Re: need help to understand this

    Quote:
    Originally Posted by Aussie100 View Post
    I really do feel for you and wish I had suggestions that may help, I am very lucky in that my PN has completely gone now after 5 years of suffering, I only hang out here to help if I can, but I can well understand all the emotional problems that come with nerve damage, the feeling of isolation, depression, pain and lack of interest off other people and some of the medical community is just horrible to say the least, its the reason I posted that letter to non pain sufferers about trying to understand chronic pain, but none the less, know body truly understands unless your been through it yourself.

    Take care
    Aussie
    Your PN completely gone - how? Had low B-12 doing injections that is now up, tried TENS helps while using, have had nerve blocks sill have the painful PN in my feet. I just started on ALA and have an appointment for low level light therapy. I have had the PN in my feet for several years but was just diagnosed with Type II diabetes. My A1C is 6.2. last go around.

     
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