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    Old 08-29-2004, 12:40 PM   #1
    long journey
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    Question Anyone's neuropathy symptoms been relapsing/remitting/progressive?

    Hello again. I'm so much looking forward to some feedback on my questions here. I'm thankful for a place like this. Over many long years, my illness has been relapsing/remitting & progressive. I once had a "probable MS" diagnosis,but rather than the central nervous system being affected, it looks to be the peripheral nerves instead. A neurologist said that many of the symtoms are overlapping between the central & peripheral nervous systems.
    After many years the episodes have become much closer together and lasting longer. The pain has become almost unbearable. During a flare up I have great pain in both hips and shoulders, and on top of that burning of arms, legs, even into my head. I don't know what I would do without neurontin.
    Does that sound familiar to anyone of you? Exhaustion has been tremendous as well, along with muscle fatigue at times. It's been more difficult than I can ever put into words. Thank you to anyone who responds to this. It has changed my life extremely in the past year.

     
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    Old 09-02-2004, 04:53 PM   #2
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    Re: Anyone's neuropathy symptoms been relapsing/remitting/progressive?

    Hi Long Journey, welcome to the Boards.

    I can't believe no one has responded yet. Gad. I haven't been online in awhile. I don't know how much I can relate. My symptoms grew milder and farther apart. I live fairly normally now. Haven't really been able to determine what brings it on or makes it goes away. I've had theories over the years: disease, food allergies, lack of exercise, etc. I'm always looking for a hook to hang a cure on. You doing any of this too? It's always good to have hope. It gets us through the low times. Figuring out the cause means you can figure out the cure. Hang in there and keep looking. I wouldn't be surprised if you don't come back since no one has responded in four days. Bummer. Don't give up though. The Boards is a good place for input. Keep posting and searching. I'll be your pen pal if you want. Cool name!

     
    Old 09-03-2004, 07:11 AM   #3
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    Re: Anyone's neuropathy symptoms been relapsing/remitting/progressive?

    Thank you riceneuroni for replying. I was disappointed that no one replied, and thought perhaps I was in the wrong place, or that most here could not identify with the relapsing/remitting progressive illness. A l-o-n-g journey it truly has been. I've been very discouraged as this recent flare-up has been going on since spring with "remissions" that last a few days then come back with more progression. This episode has turned my life upside down with the exhaustion & pain beyond anything I could have imagined. I've a skin rash called granuloma annulare which my neuro here thought my be part of an autoimmune illness causing all of my symptoms. However, he wanted me to go to a larger hospital. (These doctors are so good at passing you along to someone else) So I went to the University of Chicago and it was a reallly bad experience. I was in a "mini" remission at the time and looked too good, so they simply weren't HEARING what I was telling them. The dermatologist spent about 5 minutes with me and was so rude. I had so hoped someone there would have at least tried to put it all together. Thanks for listening.

     
    Old 09-03-2004, 03:31 PM   #4
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    Re: Anyone's neuropathy symptoms been relapsing/remitting/progressive?

    Hi,
    Don't give up on the board. I get frustrated too. I've been newly diagnosed as of last June. It has progressed fast from there but getting to that point a "long journey" too. I know stress plays a major role in this stuff, not only can I feel it, my Dr. has acknowledged the fact.

    Keep us informed as to your prognosis and how you feel. This is a lonely and painful condition. As for me, this is the only comfort I get.

    Cathy

     
    Old 09-04-2004, 06:35 AM   #5
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    Re: Anyone's neuropathy symptoms been relapsing/remitting/progressive?

    Oh my, I can't believe the UoC did you that way. It really is the big research institutes that can do the detailed testing. I went to University of Texas Southwestern. I was in a major almost complete remission and they still took me very seriously and did all the tests available. I was so relieved that they didn't blow me off just because I wasn't in much pain. I'd even gained back the nerve dystrophy that I'd lost during the previous bout so there were no symptoms for them to believe. Nothing turned up from the tests and I'm paying for them now financially, but I still think it was all worth it. See if your neuro will refer you to another teaching center. I was six months waiting to be accepted, so hang in there and keep up hope. If he won't, find an institute you want to go to and see which neuro's refer to there. I just got lucky picking a neuro, but I found out that only certain ones refer to certain schools.

    What have you been doing for self treatment like diet changes, vitamins, exercise, etc.? Have you been trying different things, too, Cathy?

     
    Old 09-04-2004, 11:37 AM   #6
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    Re: Anyone's neuropathy symptoms been relapsing/remitting/progressive?

    Cathyallen, please tell me more about your condition. Does nerve damage show on an EMG or is it just burning pain. Where do burn, how long have you had this, & how is it progressing? Thanks for you response.

     
    Old 09-04-2004, 11:41 AM   #7
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    Re: Anyone's neuropathy symptoms been relapsing/remitting/progressive?

    Thank you riceneuroni for your input. Will you please share your story with me? [ removed ] Does EMG prove the nerve damage or is it all burning?
    Have you any other symptoms? Thanks!

    Last edited by moderator2; 09-27-2004 at 07:38 AM. Reason: please carefully review the posting rules - no emails

     
    Old 09-06-2004, 02:17 PM   #8
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    Re: Anyone's neuropathy symptoms been relapsing/remitting/progressive?

    Dear Long Journey,

    Since this has manifested itself fullblown pretty suddenly I'm still trying to catch my breath. I'm trying to deal with work also. My job is a major issue, which was brought to my attention by my Neuro on my last visit, and he is working with me on that. I have a close relative who is also in the "American's w/Disabilities Act" profession who is working with me, so I think things are going to get "hairy" work wise.

    I have been doing yoga for about 2 years now and just started Aquatic aerobics. Funny thing, even the feeling of the water agrevates the feeking in my legs! But I love it, I'm a water baby! And I play golf.

    I have cousins in Dallas Fort Worth. Keep in touch, need the support.

    Cathy, in So. Cal

     
    Old 09-07-2004, 10:51 AM   #9
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    Re: Anyone's neuropathy symptoms been relapsing/remitting/progressive?

    Long Journey,

    I would ask the neuro to consider something called CIDP. It is rare and sometimes misdiagnosed for many years. It is a managable syndrome and you seem to have alot of the symptoms. He would do a Lumbar Puncture to check the protein levels in your spinal fluid and do an EMG/NCV.

    Where do you live? Maybe I could direct you to a neuro that has dealt with Guillain Barre and CIDP. I hope you find some relief soon. I know what it is like to have a severe nerve related disorder and the pain that comes along with it. As soon as you can get diagnosed and get on a treatment plan you should feel ALOT better.

    Best Wishes to you.

    Angela
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    Last edited by angelwings171; 09-07-2004 at 10:53 AM. Reason: spelling

     
    Old 09-07-2004, 12:58 PM   #10
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    Re: Anyone's neuropathy symptoms been relapsing/remitting/progressive?

    EMG's do prove nerve damage. As far as I am aware, if the damage lasts longer than a year it is considered permanent. After telling a friend of my disease her responce was pretty much a "don't complain of no shoes when there is someone with no feet". If they only knew that we are walking on hot coals all day. It's even uncomfortable to soak in a tub of water now. What next!

    Cathy

     
    Old 09-08-2004, 03:41 PM   #11
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    Re: Anyone's neuropathy symptoms been relapsing/remitting/progressive?

    Angela, Thank you. But doesn't Gulliane Barr Syndrom always start out with paralysis? Is CIDP always Gulliane Barr? I have no numbing, (slight sometimes) but the burning pain seems to spread further and get hotter with each episode. I used to have as much as a year or two between episodes, now I'm not getting much remission at all and the pain/sickness is awful. My spine burns, shoulders and hips & down the extremeties. Does this really sound like CIDP? Fatigue is horrible beyond words.

     
    Old 09-10-2004, 12:46 PM   #12
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    Re: Anyone's neuropathy symptoms been relapsing/remitting/progressive?

    Hi Angela. Please tell me more about CIDP. Is numbing always involved, and is it always called Guillain Barre as well? I live in Michigan.Angela. Where do you live? Sounds like you have a good doctor. If you've any advise for me I'd be grateful.

    Vonnie

     
    Old 09-10-2004, 12:54 PM   #13
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    Re: Anyone's neuropathy symptoms been relapsing/remitting/progressive?

    Riceneuroni, in reply to your question: Up until last July (when I had a bad flare up) I had been exercising 45 min. a day 3-4 days a week at a women's fitness center. I was pretty proud of myself as I began see muscles becoming firm & defined. There is no way I can exercise when I have a relapse. The horrible exhaustion that accompanies relapses becomes even worse upon exertion. I take a multiple vitamin & have just started with B12 after reading it's importance here. I was on a strong B Complex for quite awhile, & a B6. A doctor at the U of C. raised his eyebrows & shook his head when I told him I took B6. He said it can cause all kinds of problems.
    May I ask where you live? I'd give anything to find a good doctor who really listens.

    Your Sister in suffering, Vonnie

     
    Old 09-11-2004, 06:14 AM   #14
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    Re: Anyone's neuropathy symptoms been relapsing/remitting/progressive?

    Sorry I havent' been around. I've just been too tired after work to get online.

    I live in Ft. Worth, Texas. I think if I was back in Chicago I'd call Northwestern University Medical School. It's on the northside in Evanston. I have some ties to that school and it has been considered one of the best in the country. Not sure it's ranking now, but that's one I'd look into if I was still up there.

    I got RSD in my foot in 02 then it spread to the other foot within a couple months. When it spread they renamed the problem neuropathy. In all honesty the pain was less after it spread. I still couldn't walk on them and decided to get a wheelchair and keep getting around. It didn't really get me down emotionally. I just focused my time and energy on research and trying everything everyone wrote about that made them better. I discovered B12 shots and that knocked the pain out completely as long as I got an injection every 3 weeks. Eventually that stopped working. Went back in the wheelchair. Then I discovered methylcobalamin B12 and that knocked the pain out completely as long as I took ever increasing doses. Eventually I couldn't keep up with it and gave up. Went back in the wheelchair. The pain kept spreading and worked its way into my arms and face but not to a disabling level.

    Eventually I tried a gluten-free diet and after 2 months the pain started slacking off. After another couple months the pain was gone and I've been living a normal life ever since. It was after the pain went away this last time that I finally got in at Southwestern and they did all the tests. They found no cause. A gastroenterologist I saw for my IBS approved a Prometheus blood screen for gluten intolerance and even that came back normal. So now I've even gone back to a normal diet. I don't know what the cause was.

    But honestly, it was keeping my hopes up at finding the cause and the cure that kept me going through it all. I never gave up. It was fun researching and trying everything. It kept me focused and hopeful, and that kept me from getting depressed. Now I just try to encourage others to hang in there and do the same.

     
    Old 09-12-2004, 12:56 PM   #15
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    Unhappy Re: Anyone's neuropathy symptoms been relapsing/remitting/progressive?

    Just putting in my 2 cents on a bad day. Funny how this Neuropathy can rare it's ugly head for no reason. From "toe" to "face" today. Anyone know of any Workmans comp claims due to this?

    Cathy

     
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