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  • PN Prognosis? Is it disabling?

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    Old 10-19-2003, 09:05 AM   #1
    islandlady
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    Question PN Prognosis? Is it disabling?

    I'm 54 and have just been diagnosed with idiopathic peripheral neuropathy (no known cause) - I'm satisfied that they tested every possible cause, including MRI of back, heavy metals, glucose tolerance, diabetes and much more. My feet and legs to the knee are tingly and numb at times. Facial tingling, etc.
    I can't seem to get an answer on what the future will bring - will I end up in a wheelchair? How far will it go? It has come on in a matter of just a month or two.
    Also, I nearly died from ciguaterra poison (a neuro toxin) 20 years ago. Could this have anything to do with that? No one seems to know or even have heard of ciguaterra.
    HELP! Anyone have any information on any of the above, but especially personal knowledge about the progress and extent of disability? I don't mind being numb, or even pain, but really don't want to lose the ability to walk!
    Thanks to all of you!

     
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    Old 10-19-2003, 12:44 PM   #2
    avia
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    You could be deficient in B12. Even though your levels may be within the normal range you still may benefit from taking vitamins of this sort. Also have you been tested for thyroid disorders, lymes, lupus, or celiac disease? These all can cause PN symptoms. Good luck.

     
    Old 10-19-2003, 03:23 PM   #3
    islandlady
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    I was tested for all of those and was actually excellent on the B12 (I take a B complex daily but watch the B6, I know it can be harmful). They tested every known cause for PN but got nothing.
    Thanks for the suggestion, though.

     
    Old 10-20-2003, 05:18 PM   #4
    jamesmc
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    Hi,

    I too have been diagnosed with ciguatera poisoning (quite common in australia).

    Your illness may or may not relate to this.

    One thing i can say is that if you have ever had ciguatera in the past, the consumption of fish, nuts or chicken may cause a flare up of neuropathy. So, for awhile at least, it may be best to avoid these foods.

    James




     
    Old 10-20-2003, 05:31 PM   #5
    islandlady
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    Thanks James. I never heard about that. I have been eating lots of walnuts lately, so I'll avoid that.
    I hope your ciguaterra wasn't too bad. I had enough to kill a horse and arrived at the hospital not breathing and cyanotic. I was sick for nearly a year. But it was 20 yrs ago, and I've never had any relapse before and I do eat other fish (non-reef feeding fish - I was told to never eat reef feeders again or it could kill me since the dose I had was so great). Anyway, I'll do as suggested and avoid those things.
    Thanks! and good luck with recovery. I had B-12 and cortisone injections weekly for a year - they really helped.

     
    Old 10-23-2003, 04:38 PM   #6
    jamesmc
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    I forgot to give you my opinion on prognosis.
    It seems to me that unless there is some kind of autoimmune response that is perpetual and ultimately causes scarring, then I personally believe that the prognosis in most cases is good. The brain and body is very good at healing. Generally speaking, if it is not an autoimmune response, then we are either looking at a nutrient deficiency, but more likely (particularly if the symptoms had a rapid onset) a virus, bacteria or toxin that has damaged part of the nervous system. Thus, in most cases, it is reasonable to assume that the damaging agent has gone, and we are left with symptoms that stop the CNS working properly.

    A inflammologist once told me that he has seen people with huge holes in there brain, walking and talking normally, when in theory, they should be a vegetable.

    If nothing shows up on an MRI after 2 years, then you I beleive you can safely say that the problem, although it may be exteremely uncomfortable, is not degenerative. The best thing I think one can do is set themselves up for success.

    That means EATING WELL (we are what we eat). That means lots of fresh vegetables and legumes, lots of water, and no sugar, caffiene or yeast. Exercise is important, if you can. Movement gets the lymphatic system going. Supplements may help, but as yet I haven't worked out which ones. The ones I take are
    general multivitamin
    ALA
    VitC
    B12
    Bcomplex
    Whey protein.
    Omega3 flax

    James






     
    Old 10-23-2003, 06:01 PM   #7
    Kathim
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    Island Lady !!!!!!!

    Hi... I am Kathi and am 47 and I am sure have had PN for about 2 years.... at least I ahve had the symptoms for that long but my Rheumatologist kept turning a deaf ear to my complaints. I finally got a new one and was given an EMG in june and Dx of peripheral neuropathy of both lower extremities. I am at a loss like you and fear of losing legs or feet........
    I just started neurontin 2 weeks ago and it is helping a lot.... !!!!

    I know u answered yes to the testing questions but are you sure they have tested your ANA antibodies???? And were you negative?????

    Just a thought for you .... I had been tested ANA also for 3 years and always negative......BUT finally just started testing positive in July,,,,, and now last month even higher.... I have lupus and was just DX. A very small number of lupus patients get PN.
    You may want to check this out and even re-check it. U can have lupus and be ANA negative in odd cases.

    Let me know what drugs u take for yours.....

    Thanks....Kathi

     
    Old 10-23-2003, 06:07 PM   #8
    islandlady
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    Thanks for the information! I'm on neurontin, 900 mg/day. It helps a little with the pain.
    They did test me for lupus, but I know my regular (non-neuro) doctor said she believes sometimes people can be in early stages and not show on tests yet, as you've proved.
    Have they given you a prognosis - like how bad it may become? I know it's not good news to be told you have lupus, but if you think of it positively, you have something to deal with, and you know what it is and there are a lot of things they can do to help.
    Best of luck to you!

     
    Old 10-23-2003, 06:27 PM   #9
    islandlady
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    James -
    You mention MRI. Do you mean of the brain? That's one thing they have not done. I'm wondering about the possibility of MS. I have spoken to a neurologist here where I live, and he believes I should have an MRI of my brain since I'm not manifesting symptoms all over (face, arms, etc - not just legs).
    This is such a complicated thing. It's clear that diagnosis is difficult.
    I totally agree with you about "you are what you eat" and am now being much more careful. I've always read a lot about vitamins, etc. and feel very strongly about that. Also am careful not to take too much of anything,too.
    Thanks again! Let me know about what MRI you mean.

     
    Old 10-23-2003, 08:29 PM   #10
    Kathim
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    Island Lady !!!

    Hi.....They dont say really anything about the lupus as far as prognosis. You really must deal with all the symptoms....so far the PN is my "*****"
    I have just found a pretty good rheumy but the neurologist is the pitts......I have 86'd him. He did an EMG on me that was barbaric beyond belief and the one I had in June was a piece of cake by a different Dr. The neurologist put me in such a flare I am still trying to recover.


    I am not on 900 a day yet of the neurontin but am building to that point. I had massive head pain at first.

    Kathi

     
    Old 10-24-2003, 03:44 AM   #11
    islandlady
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    Kathi:
    Interesting about flaring up after the EMG. I just had all those tests a few weeks ago and never felt worse!
    My brother, who is in his 60's, is about to be tested for lupus. For years, off and on, he's gotten a "butterfly" across his face and chose to ignore it along with other symptoms. It's becoming clear to me that my family has lots of autoimmune (all have arthritis, I have colitis along with other problems).
    But I have a friend in the hospital with a very bad cancer, and I'm sure she'd trade places in a minute. I guess we all have to count our blessings.


     
    Old 10-27-2003, 06:21 PM   #12
    jamesmc
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    Yes, MRI of the brain is a necessity.
    Personally, I wouldn't read too much into the +ve ANA, especially if it is the speckled variety. It's quite common in the general population. It's my belief that most of these illnesses described here originate somewhere in the brainstem, at the molecular level, and probably won't show on any test or scan. It's important to rule out things like autoimmune illnesses though
    james

     
    Old 10-28-2003, 04:27 AM   #13
    islandlady
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    James -
    You've clearly studied this. I'm very, very new to it all, so forgive my questions if they seem stupid. Also, since I live in the Caribbean and had all my tests done in the US - it's hard with no one right here to ask. Anyway - you said to rule out autoimmune, and I agree. Is that done by the brain MRI? By autoimmune, do you mean MS, or are there others? I'm flying to the US again tomorrow to have the brain/spinal cord MRI's. Scared to death that they'll find swiss-cheese in my head! I'll be gone a week (also going to see my stepson for his birthday).
    I'm trying to have a "life goes on" attitude, but it's hard not to obsess, especially when 24/7 you have burning,tingling, or some odd sensations somewhere or everywhere (including my tongue and throat!) in you body.
    Anyway- if you could, please let me know how they test for autoimmune, and thanks for letting me benefit from all your investigations!

     
    Old 10-28-2003, 06:11 AM   #14
    Kathim
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    Hi Island Lady..I was reading your post to James and thought i would answer you.hope u dont mind.
    AUtoimmune testing is VERY important and also mycoplasma testing to see if you are mycoplasma positive to something....(I was and very high) ask the Dr.....some dont test....
    Autoimmune is done by blood tests. You should ask the Dr for thorough autoimmune testing especially when you suspect it in family etc and with colitis etc.

    You SHOULD heed to positive ANA's so James is wrong there !!!!!!! Yes.........there are in some instances a low meaning 1:40 to 1:80 titer isnt even considered questionable but when u rise above that..............well........at our age etc...it should be looked into by a qualified rheumatologist well versed in autoimmune diseases !!!!
    As I mentioned to you earlier there is something called sero-negative Lupus.
    I have heard of people not having a pos blood test for years but have symptoms and are pushed form Dr to DR.

    Good luck in your quest.....please keep me posted !!!

    P.S. while having bloodwork done you should ask for thyroid work up which I am sure you have probably had but I found to ask for a "Thyroid anti-body test called thyroid peroxidase" and low and behold I was positive. My thyroid specialist who I found "after the fact" praised me on being so smart to ask for it as most dr's do not test for it. I asked for t3,t4,freet3,freet4, tsh, and the above thyroid peroxidase antibodie.
    I also searched out a DR (rheumatologist) who tests for mycoplasma the "correct" way with "correct" labs and that is where I also found to be HIgh positive to M-pneumoniae.

     
    Old 10-28-2003, 06:12 AM   #15
    smooth69
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    I have PN in my feet and ankles. The cause has been determined to be HIV/AIDS, the virus itself and not the medications. I take neurontin (600-300-600 mg) which helps with the pain. As my CD4 count continues to rise the PN has started to improve. However, I still have no reflexes in my ankles and often stumble while walking. My hands and arms are not yet effected.

    [This message has been edited by smooth69 (edited 10-28-2003).]

     
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