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  • Peripheral Neuropathy?? Need some advice

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    Old 08-15-2012, 08:02 PM   #1
    mlanave
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    Question Peripheral Neuropathy?? Need some advice

    Please bare with me this is long, but I needed to include all the facts.

    I'm new here and looking for some advice. I've suffered pretty badly for six weeks now. July 2nd I began to have pain in abdomen and back. It was severe. Several days later I broke out with a rash and went to the dr. I had shingles. Three days later I began to have a lot of difficulty walking. I could barely walk. I had numbness and tingling in my legs as if they were asleep and my legs felt heavy. I shuffled my feet in order to walk. The tingling and heaviness went into my arms and hands as well but I could move them just fine.

    I went to the ER and was admitted in the hospital for a week. They thought that I had Gullian Barre Syndrome. The paralysis did not move up. They did two MRIs, an xray and a catscan along with bloodwork. No lumbar puncture because I had shingles. Nothing showed other than a herniated disk they found but said that it was not pressing on a nerve and shouldn't be causing difficulty in my walking. My reflexes are very good in my knees.

    The nuerologist told me she thought I had a mild case of gullian barre. I was on percacet, tramadol and gabapentin for pain. The pain was in my abdomen, side and back from the shingles. I had not had pain in my legs until two weeks after I came home from the hospital, I suffered an attack in my legs. I began to hurt so badly the pain medication was not helping fully.

    I now have stabbing pain in my legs, knees, ankles and hips. I have chills that run down both of my legs. I have lost some sensation in my legs up to my knees. I have muscle cramps in my legs and feet. I still have tingling and numbness in my legs and feet but no heaviness. I also have tingling in my hands at times and mild pain in my arms. I have nerve twitches in my legs. I have pain in my lower back and at times in my neck and between my shoulders. I have nerve twitching in my shoulder somtimes but mostly in my legs. I have numbness in the area where my shingles were and still have pain but not as severe or as often. My feet become reddish purple looking when I stand on them too long. I couldn't feel my feet for a few days when this pain began in my legs. The pain was deep in my legs like in the bones and joints. It felt like I was walking on sticks. My walking got worse. I was only shuffling inches. I can't sit or stand for a long time with out being in pain.

    About a week ago, the physical therapist was working with me and I started walking with a better form. It's still very slow but improved. The nuerologist saw me last week and told me that I had nueropothy in my legs but that she didn't still think that I had mild gullian barre because my reflexes are still good. I got frustrated because she can't determine why I have this or why I have pain or difficulty walking. She acts as if she is at a loss. I believe that diseases that could cause this have been ruled out now which is positive.

    From what I have read, nueropothy does cause a lot of pain as I've described and can cause difficulty in walking. I'm not sure what is going on but it has to do with the shingles because that is when it started. I go in next week to have a brain mri and the next week to have a nerve conduction study done. I'm concerned because I want her to identify the problem so that if I need some type of treatment I can get it. I want to know what's going on and if I can get better from this. I want to know if I will be able to walk again like I did before and if I will recover or if this is something I'm going to have to live with now.

    Peripheral nueropothy hasn't been suggested by her but I have all the symptoms except for burning and decreased reflexes. Do you have to have decreased reflexes? That's the reason she doesn't think it's gullian barre now and I fit those symptoms and shingles can cause gullian barre. I failed to mention that I have an underactive thyroid too. It's under control now I believe but I was off meds for months and just recently got it back under control.

    I fear the study won't show anything but if it's based on pain then I know it will show it. The pain is not mild it's pretty strong. I don't know a lot about the studies, I'm just scared because they haven't found anything so far and I think they are running out of tests to do on me. I'm only on tramadol and gabapentin now and it barely takes the edge off of the pain. It comes and goes but it occurs everyday and somedays it's worse than others. I was hoping that maybe some of you may know a little bit about this and could give me your thoughts. Thanks for taking the time to read this long story but I wanted to include all the facts

     
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    Old 08-17-2012, 07:49 AM   #2
    tingles
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    Re: Peripheral Neuropathy?? Need some advice

    Shingles can be a real ugly disease. While you might not have gullian bare you may have nerve damage. Loss of reflexes is a sign of nerve loss and without it I am not sure you can have gullian bare. If you have serious nerve damage you may have to live with it. If the nerve damage is not too severe you can hope to recover some.

    I have lost the reflexes in my legs and feeling and strength but I have been able to regain a lot of strength by doing Tai Chi. The reflexes and feeling are still gone. My pain is a stabbing pain or a burning pain usually. The good news I will reiterate is that I have regained strength and walking ability.

    Stick out the tests and keep us appraised on how you are doing please.

     
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    Old 09-09-2012, 10:13 AM   #3
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    Re: Peripheral Neuropathy?? Need some advice

    I am sorry but you have every thing I have, it didn't start out as fast as yours, I had a small stroke 6 months before I got pain in my feet, now after 10 years it's all over my body, it's called Peripherial Nueropathy, and I have tried every thing and more then you, it's a disease of the nerves of the whole body. I have learned to live with pain, buy new balance shoes, walk as much as you can every day like an hour even if it is slow. If I didn't take Ambien to sleep, don't know what I would do. even the weather affects it. I am sorry you have this P.N., the dr.s are now starting to learn about it, before they would just say live with it, if only they could walk in my shoes for 2 days, they would cure us., b12-shots help me too, i give them to myself. Don't give up,sandy

     
    Old 09-18-2012, 08:52 AM   #4
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    Re: Peripheral Neuropathy?? Need some advice

    This is my first post and this site is overwhelming as I can't figure out exactly where to talk to others about my condition when they are online also. Well, here goes. I just got PN and I also have drop foot. Dr. wants to do Spinal Cord Stimulation next month. Has anyone had this done? Also, any recommendations regarding drop foot?

     
    Old 09-18-2012, 07:19 PM   #5
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    Re: Peripheral Neuropathy?? Need some advice

    Quote:
    Originally Posted by mosesthecat View Post
    This is my first post and this site is overwhelming as I can't figure out exactly where to talk to others about my condition when they are online also. Well, here goes. I just got PN and I also have drop foot. Dr. wants to do Spinal Cord Stimulation next month. Has anyone had this done? Also, any recommendations regarding drop foot?
    Moses,
    Select the tag entitled new thread at the top of this thread or at the top of all of the threads and then you will be able to make your own post. You should get more replies this way. I have never had a spinal cord stimulation so I cannot help you there.
    Tingles

    Last edited by tingles; 09-18-2012 at 07:20 PM.

     
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    Old 10-23-2012, 12:44 AM   #6
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    Re: Peripheral Neuropathy?? Need some advice

    The medications you are on do have the side effects you are experiencing. It is rare but your original symptoms could be made worse with those medications and cause a neurologist not be able to diagnosis you. You did say the doctor put you on those medications when she thought you had guillians barr. Why didn't the medications change when she felt differently? Just a suggestion to check into the side effects since you have become worse. Also, if she feels reluctant due to negative testing...find another doctor don't waste your time with this.

     
    Old 10-23-2012, 01:03 AM   #7
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    Re: Peripheral Neuropathy?? Need some advice

    SCS is not to be taken lightly. There is a lot of negative postings on this subject in the PN area. I did the trial for this procedure. No, it did't work for me. The electrical current is meant to divert your mind from receiving the pain signal off the nerve. My sister had the SCS and ended up becoming a total bedbound care because the SCS malfunctioned. She had a major coronary that was masked due to the SCS implant. The teaching hospital team that cares for me after having 11 major surgeries decided after careful studies that the SCS doesn't provide sufficient relief unless you have a narcotic implant done at the same time. BUT, doing this will give relief for a short time and when your body becomes dependent on the morphine or other narcotic the amounts to increase will not relieve the pain but eventually you will not be able to increase without killing you. Also the narcotic will alter test results and diminish your quality of life. So, no I don't feel that is the direction for me. I started to do research and found many alternative methods. I do Holistic approach now. I exercise and push through the pain. I only use neurotin and vitamins and herbs for my pain. Yes, it does work. It does take time though. Your body needs to cleanse out the impurities. I do not eat sugar, caffeine or a lot of red meat. These create inflammation and infection in your system. I know it sounds like a farce but it really does work. Cinnamon, nutmeg, ginger, turmeric plus other herbs and spices really do work. I do understand the rough road to detox and the time it took to reach this level. And, no the pain will never be total gone. Nerve pain is bad and permanent unfortunately. I seek a quality life now with what it takes. I do wish you the best. The main thing is educate yourself by researching on the internet but seek information from places like Mayo Clinic and teaching hospitals plus look for the contraindications of any drug, device or other that is recommended. People don't tend to post the positive info either . The end choice is yours...not the doctor be assured the doctor won't be there after the recovery period. If it doesn't work, you will need to have the SCS removed. But, the SCS will not ever allow you to have an MRI. If removed you still will have a foreign objects left inside...the leads cannot be removed because tissue grows around them. So really research and make this decision for yourself based on facts.

     
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    Old 10-23-2012, 06:55 PM   #8
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    Re: Peripheral Neuropathy?? Need some advice

    Hello, Granny. Not sure if you were posting to something I asked (I am new to this site and not all that computer literate), but I did not go through with the SCS because I got drop foot first and decided to see a neurologist first. He told me that I needed steroid treatment and so I was hospitalized for 3 days on heavy doses. (both doctors at the same hospital) The treatment helped a bit, but when I went home everything return. Now they come to my home one a week to give me the steroids. I had one dose thus far and it didn't make any difference. I am so thankful to you for sharing. I don't know if I would ever had read your post before having the SCS which was due to be performed on 10/15. I'm not sure if this steroid thing is working either, but I'm glad I didn't get the SCS. Thank you.

     
    Old 02-09-2014, 02:39 PM   #9
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    Re: Peripheral Neuropathy?? Need some advice

    Here is what I have found out.
    Take Lyrica for pain
    Check your B vitamin levels, in particular your B12 level. If B12 is low, adjust it with patch therapy or B12 shots.
    Take alpha Lapoic acid. Start with 10 mgs and increase to 60 mgs.


    Longgrub

     
    Old 02-10-2014, 12:24 PM   #10
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    Re: Peripheral Neuropathy?? Need some advice

    Has anyone ever tried any type of dietary supplement to relieve the pain and numbness. A neighbor tried a product called Zobria that has been helping him and I wanted to see if any one has tried it themselves?

     
    Old 02-10-2014, 05:43 PM   #11
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    Re: Peripheral Neuropathy?? Need some advice

    Hi Mlanave :-)

    Your experiences sum up the most common problem with Neuropathy: the difficulty of diagnosis! The preponderance of evidence indicates that PN isn't a "disease" unto itself, but rather an array of symptoms caused by an underlying disorder. It probably won't surprise you to know that 40% of PN cases end up being diagnosed as "idiopathic", which roughly translates to "we don't know", which in turn means the physicians involved are unable to isolate that underlying disorder. In any specific patient, it could be mild cases of fibromyalgia, multiple sclerosis, Parkinson's, surgical procedures involving the nervous system... just about any neurological disorder under the sun. Many, many of them produce PN as a "side effect".

    Depending on the physician or physicians, the tests you may be asked to undergo, going forward, are part of a "process of elimination". The purpose of that process is try to isolate the underlying cause, and if discovered, to more closely direct the focus of medications and therapies.

    So my advice to you is to go along with the testing process within the limits of finance and invasiveness. If the underlying cause is indeed discovered, you'll be one of the lucky ones! Most of the folks who post to this PN forum do so because their PN is idiopathic. If someone knew that his underlying cause of neuropathy was, say, fibromyalgia, he'd be posting to the fibromyalgia forum, not this one.

    When I say "lucky", I don't mean to imply that discovering the underlying cause of your PN will lead to a "cure". It only means that if the cause is isolated, the specialists in that disorder would be better able to treat the symptoms specific to it, rather than shooting in the dark. That is (for example), the medications and therapies for Parkinson's are quite different from those used to manage multiple sclerosis.

    (Disclaimer: I've been diagnosed with PN after clinical tests, a brain MRI, ENT examinations, EMG tests and DaTscan. My only symptom, so far, is rather severe disequilibrium on a "comes and goes" basis. My diagnosis is "idiopathic" PN. I can live with it, but feel great sympathy for those whose symptoms are much more severe than mine.)

    Frank

    Last edited by Mariner403; 02-10-2014 at 05:46 PM. Reason: Error

     
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