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    Old 11-06-2003, 10:29 AM   #1
    jm1311
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    Unhappy newbie to neuropathy diagnosis

    Hi, I am new to this board. Around 2 months ago after getting a bad cold I got numbness and tingling and loss of strength in my hands (ring/pinky fingers and outside the worst). Finally was able to see a neurologist and had and EMG done this week which confirmed ulnar neuropathy. I have done numerous blood tests and am going to do a 24 hour urine test. He is seeing my again at the end of December. I don't know why we are waiting so long to meet for a followup. He has ruled out diabetes and some other stuff. For now until we get the results of the latest bloodwork he just said to stay off my elbows, take a vitamin supplement and followup with my GP regarding the fatigue and joint pain.

    I am not very good at describing symptoms but some of them are or have been the following:
    I also have some numbness in my feet. Burning on the top of my right foot. Chronic fatigue. Insomnia. Sometimes it feels as if I have numbness in my face and one eye in particular. Muscle aches in various parts of my body and major pain in my hips, shoulder and knees. I began to think that I had rheumatoid arthritis but after reading these posts on this board i'm thinking neuropathy in general - also I tested negative for RA. I really don't know. It is extremely frustrating. My neurologist has not ordered any MRI's.

    My family seems at times disbelieving of my symptoms. Take better care of yourself. Stretch more, eat right, exericise. I have a hard enough time sometimes getting from one end of the house to the other. I am exhausted. I term my days now by "bad body day" or not good day or better day. Never a good day for a while now.

    I am very distressed at not being able to pinpoint the cause. I get depressed when I read that for some it has taken years for a proper diagnosis. As I write I am exhausted. I'm sorry if this seems disorganized but my fatigue has effected my capabilities to think.

    Anyway, I am glad this board is here where I might benefit from others experience, strength and hope. And hopefully I can give back as well.

    One Day at a Time
    Jennifer

     
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    Old 11-06-2003, 06:37 PM   #2
    sassyoday
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    i had alot of those problems myself. have u been checked for lupus, or fibromyagia? i have lupus and diabetes, but befor i found out i hurt in my hands and hips, there was times i could hardley walk. so if u haven't been checked for lupus, ask your doctor about it, some times it can be the food u eat also, like the night vegatables onions, garlic,etc,
    hope u get better soon

    let me know ok sassy

     
    Old 11-07-2003, 01:10 PM   #3
    Kathim
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    Unhappy Lupus !!!

    Hello to both of you.......

    I too have Lupus......just recently diagnosed but had aches and pains for sometime...and the neuropathy for at least two years before that was Dx in June. All my complaints fell on deaf Doctors ears !!!

    I was just told a couple days ago that my neuropathy has been caused by the lupus........I already figured that one out !!!

    You should definately be checked for ANA levels......and should see a rheumatologist.

    good luck and like sassy.......please keep us informed....

    Kathi

     
    Old 11-11-2003, 09:19 AM   #4
    jm1311
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    Post thanks for the feedback, heres the update

    Well still at a loss here. My symptoms resemble so many different things. Lupus, CFS, RA, fibromyalgia.

    I saw the neurologist and he had me go do more bloodwork. I think its more specific tests. Initial bloodwork showed my thyroid OK and negative RA factor. Not sure about the ANA but I think that was being tested again in the second batch of tests. I also have done a 24hour Urine collection. This is to test for metals as I work next to a metal plant.

    Yesterday I saw my GP and he wanted to do a few more blood tests as well. I don't remember two of them but he was testing for Epstein Barr and Parvovirus. It's frustrating but trying to just take things one day at a time.

    I actually had a great 1/2 a day on Saturday which haven't had in like 2 months. I was literally pain free hips on down and minor aches in shoulders and my numbness in hands. I couldn't believe it. It was so great to feel normal again. I'm trying to focus that I'll be able to feel that way again - or at least i'm hoping.

    Today is a so-so day. Pretty fatigued, somewhat stiff this morning and pretty achey in knees and hips especially after sitting for a while.

    I'll update when I get the results from the last batch of tests.

    Hope y'all are doing good.

    Jennifer

     
    Old 11-17-2003, 06:33 PM   #5
    islandlady
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    It's so weird reading about all of you, with symptoms just like ones I have (also had every test known to man with no cause found - "idiopathic" - and continues to spread). I'm beginning to think there's something very pervasive out there - a chemical, a bug, a virus - that we've all run into. There are so many of us! And until this all started, just a few months ago, I never ever would have imagined or dreamed this up! Always worrying about breast cancer, weight, lung cancer - but who would have thought this would turn out to be the illness (or symptom of a mystery illness) that would plague us?

     
    Old 11-19-2003, 03:46 AM   #6
    Babybeast
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    A possible reason for PN

    Read on: My experience, related below, ended with good news!

    I have just been tentatively diagnosed with something called Celiac disease. It is a profound, inherited intolerance to the gluten in wheat, barley, rye, and oats. I cannot eat even a minicule amount. This diagnosis also explains my peripheral neuropathy (confirmed by EMG). I have noted for many years increasing numbness in both soles of my feet, pain, and weakness in both kegs, so severe I cannot get up easily from a chair, cannot run without my knees buckling, etc. Even standing is unbearable.

    There is a simple blood test for the Celiac sufferer. And--most joyful--there is a totally effective treatment: cut all gluten from your diet. It can be a bit intimidating to start; I'm learning that even stuff like honey is full of gluten. But it is do-able and well worth it!

    I had no clue that I was intolerant to gluten (in wheat, etc) because the symptoms do not always manifest themselves immediately after eating (though sometimes do so often rather more violently than is fun!). I was told long ago that I suffered from something called Irritable Bowel Syndrome--NOT! Now I know that Celiac Disease (CD) has been the culprit since before I was born (in vitro damage to cells was recently discovered likely).

    I don't know yet (just diagnosed) whether my PN symtomatology will reverse, but at least I am certain it will not get worse.

    I would love to hear from any of you if this helps.

    Cheers
    Mary Bethany

    Quote:
    Originally Posted by jm1311
    Hi, I am new to this board. Around 2 months ago after getting a bad cold I got numbness and tingling and loss of strength in my hands (ring/pinky fingers and outside the worst). Finally was able to see a neurologist and had and EMG done this week which confirmed ulnar neuropathy. I have done numerous blood tests and am going to do a 24 hour urine test. He is seeing my again at the end of December. I don't know why we are waiting so long to meet for a followup. He has ruled out diabetes and some other stuff. For now until we get the results of the latest bloodwork he just said to stay off my elbows, take a vitamin supplement and followup with my GP regarding the fatigue and joint pain.

    I am not very good at describing symptoms but some of them are or have been the following:
    I also have some numbness in my feet. Burning on the top of my right foot. Chronic fatigue. Insomnia. Sometimes it feels as if I have numbness in my face and one eye in particular. Muscle aches in various parts of my body and major pain in my hips, shoulder and knees. I began to think that I had rheumatoid arthritis but after reading these posts on this board i'm thinking neuropathy in general - also I tested negative for RA. I really don't know. It is extremely frustrating. My neurologist has not ordered any MRI's.

    My family seems at times disbelieving of my symptoms. Take better care of yourself. Stretch more, eat right, exericise. I have a hard enough time sometimes getting from one end of the house to the other. I am exhausted. I term my days now by "bad body day" or not good day or better day. Never a good day for a while now.

    I am very distressed at not being able to pinpoint the cause. I get depressed when I read that for some it has taken years for a proper diagnosis. As I write I am exhausted. I'm sorry if this seems disorganized but my fatigue has effected my capabilities to think.

    Anyway, I am glad this board is here where I might benefit from others experience, strength and hope. And hopefully I can give back as well.

    One Day at a Time
    Jennifer

     
    Old 01-29-2004, 07:53 PM   #7
    br1
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    Re: newbie to neuropathy diagnosis

    Hello all!
    I have had back pain for many years & a recent discogram showed a tear in L-5. The doctor did an IDET proceedure to repair the disc with heat. After the proceedure I had waekness in my left leg and couldn't lift my front part of my foot and walking was like it was flat when I would take a step. The doctor was casual about it & sent me for an EMG test. The test showed severe damage to the L-5 nerve root. After freaking out I am wondering what happened and if it will get better with time and is there anything to repair it?
    Any input is helpfull.

     
    Old 02-03-2004, 03:31 PM   #8
    boliver
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    Re: A possible reason for PN

    I am new to this board. Also have been struggling with neuropathy and becoming so frustrated with doctors. If SxS don't fit the ideal picture, it sdoestn exist. I have had nu mbness and shooting pains and muscle tetany in legs and shins, sometimes forearms. Started last July Have tried everything....got off HRT, stopped Lipitor 8 months ago, tried Lexapro, St John's WOrt, Armour Thyroid, (not one doctor could agree on what it was and all test in normal range) amytryptiline...all horrible. AM sensitive to most drugs and nothing works. Now am experimenting with magnesium and calcium....web sites indicte a MG deficientcy may cause thes kinds of things. But I am mostly going it alone as doctors get frustrated.Cant blame them, so do I. I have no answers yet....but will share whatever works when it does. Barb








    QUOTE=Babybeast]Read on: My experience, related below, ended with good news!

    I have just been tentatively diagnosed with something called Celiac disease. It is a profound, inherited intolerance to the gluten in wheat, barley, rye, and oats. I cannot eat even a minicule amount. This diagnosis also explains my peripheral neuropathy (confirmed by EMG). I have noted for many years increasing numbness in both soles of my feet, pain, and weakness in both kegs, so severe I cannot get up easily from a chair, cannot run without my knees buckling, etc. Even standing is unbearable.

    There is a simple blood test for the Celiac sufferer. And--most joyful--there is a totally effective treatment: cut all gluten from your diet. It can be a bit intimidating to start; I'm learning that even stuff like honey is full of gluten. But it is do-able and well worth it!

    I had no clue that I was intolerant to gluten (in wheat, etc) because the symptoms do not always manifest themselves immediately after eating (though sometimes do so often rather more violently than is fun!). I was told long ago that I suffered from something called Irritable Bowel Syndrome--NOT! Now I know that Celiac Disease (CD) has been the culprit since before I was born (in vitro damage to cells was recently discovered likely).

    I don't know yet (just diagnosed) whether my PN symtomatology will reverse, but at least I am certain it will not get worse.

    I would love to hear from any of you if this helps.

    Cheers
    Mary Bethany[/QUOTE]

     
    Old 02-04-2004, 09:54 PM   #9
    2thedogs
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    Re: newbie to neuropathy diagnosis

    Couple of other neuropathies that those of you without answers might look up or ask about are Guillain-Barre and CIDP. GB often occurs after some other illness, progresses quickly, can be completely debilitating in the short term, but usually ends up with complete recovery. CIDP is a sort of chronic version of GB but progresses more slowly and there is little known about the long term prognosis. Treatments are available to moderate it.

     
    Old 11-20-2004, 03:58 PM   #10
    unicorns627
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    Smile Re: newbie to neuropathy diagnosis

    I was just recently diagnosed with ulnar neuropathy. Can anyone tell me what the symptoms and treatments are? He said it is involving both motor and sensory nerves. Would appreciate any information on this.

    Thanks,
    Sandy

     
    Old 12-04-2004, 06:53 PM   #11
    tacmcl
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    Re: newbie to neuropathy diagnosis

    Hi Jennifer- Your symptoms sound so much like mine. Has the doctor came up with anything yet? My neuro said post viral demylination... one time shot type of thing that is gradually getting better. I too have ulnar nerve problem. Clean MRI and blood tests except for ANA was slightly postitive. Neg for Lupus and Arthritis. Was wondering if it was first signs of lupus that didn't show up in blood work. I'd really like to know how your doing?

    Tamera

     
    Old 12-05-2004, 01:09 PM   #12
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    Re: newbie to neuropathy diagnosis

    Sorry I have no clue as to your source of your illness. I have Cryptogenic Neuropathy. I've been off work since 10/12. I have now filed a Workmans Comp Claim as my Neuro feels the stress level of my job has exaserbated my condition which continues to worsen as the days go by.

    I finally feel like it's easier to tell what body parts doesn't hurt, burn, tingle, etc.. You friends out there are my only connection with others suffering the same diease. If friends and family can't see the ailment they just don't understand.

    Stay brave.
    Cathy

     
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