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Old 08-09-2006, 05:48 PM   #1
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Question what can I expect?

I have been told this week that I have neuropathy . I dont know what to expect. I have had this over four years but didnt know what it was. the last six months it has progressed fast.does it just go so far and level off?

Last edited by alma123; 08-10-2006 at 06:34 AM.

 
Old 08-10-2006, 06:15 AM   #2
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Re: what can I expect?

just what exactly is RN?Marcia
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Old 08-10-2006, 06:32 AM   #3
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Re: what can I expect?

i have neuropathy i dont know what to expect in the future

 
Old 08-11-2006, 08:11 AM   #4
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Re: what can I expect?

Have you already had nerve tests for neuropathy? It's very difficult for anyone to say what you can expect. Some people have a mild form and it never progresses. Others have a more severe form. Your doctor will have to determine what meds you need to be on. Each person is different, responds differently, and has different pain tolerances.

Have you been to the doctor recently?

Susan

 
Old 08-11-2006, 08:48 AM   #5
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Re: what can I expect?

I am new to this site but have had neuropathy for two years and am still going through tests to determine the cause. I can not emphasize enough need to to proactive and ask the neurologist the cause. If he has not run an extensive battery of tests then he is just treating a symptom and not the cause. Since I have a medical background it may be easier for me to deal with the system. To date I have seen three neurological specialists and am currently at the Univ of Minnesota Neurological research clinic and am going to be refered to the Mayo Clinic and an automonic neurologist. I have to date (ftrough insurance) racked up a $185,000 bill on what is the cause (my situation seems be be very unusual. I have had bone marrow and intestional biopsies and hundreds of blood tests and MRI's and a host of other studies to rule out many diseases that can cause neuropathy. Now to an automonic specialist to determine if one of the hundred diseases that fall into this category is the cause. To make a long story short, everyone needs to know what the cause is since many of the potential causes and life threatening with life survival measured in a few years.

 
Old 08-11-2006, 02:00 PM   #6
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Re: what can I expect?

I had a nerve test 3.5 years ago . It didn't show anything. also I had a MRI to rule out MS . I recently back to my family Dr. He has thought all along that it was neuropathy. He set up an appointment with a Neurologist. I saw him this past Monday and he ran no tests. I have no Insurance and he said since it is not due to diabetic reasons that no matter how many test he runs I will probally never know the cause. He said I have irreversible Damage in my feet. And that my balance is going to stay like it is. He said keep my cain with me for safty. I have had several hard falls in the last yr due to my balance and the fact that I tend to drag my feet.I think I have them up high enough and I stump the bottom of my foot on the ground or hang my toe in something.Also just standing still anyone can just brush against me and I willstart to fall . After the Dr. told me these things I just kind of went blank and didn't ask questions. He gave me Cymbalta to try for one month . It is an antidepresant and also used for nerve pain. So I wonder is the only treatment just for pain?

 
Old 08-11-2006, 06:50 PM   #7
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Re: what can I expect?

Where to start on this one....Alma, If you have no insurance see if there is a county/state/university hospital in your county/state that can help out. Here in albuquerque, anybody that goes to UNM (university new mexico) hospital is treated regardless of insurance. Secondly i have to chuckle at your DR.telling you to keep your cane for safety...Reminds one of the storys that DR.Weil tells about a women at the neurologist office and he tells her she has MS so he leaves for a few minutes thens returns with a wheel chair and when she asks whats that for he replies that he wants her to practice getting in and out of the chair because she may need it someday.What dunces they are sometimes...

As far as your nerve damage being irreversible well you won't know until a clear diagnosis is confirmed so i would ask the DR.about a spinal tap so they can anaylise the fluid as they check for about 8 different things...

Lastly you say you fall over easy because of your balence ...is that the balence in your head like dizzyness or in your feet do to weakness....
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Old 08-11-2006, 07:29 PM   #8
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Re: what can I expect?

thanks for your reply. the balance problem is not in my head. also the Dr. told me if I get aproved for social security then he would run some test.My legs and feet are very weak.they feel like they are going to just buckle up. I have swelling in the balls of my feet that feels like you are walking on big globs of something. I have quiet a bit of swelling in my feet and legs. I also have arthritus I dont know if the swelling and numbness is due to one or the other or both.My family Dr. did run a rumitoid test and it was negetive. I do take arthritus medicine or I get in so much pain I cant stand it.

 
Old 08-12-2006, 06:59 AM   #9
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Re: what can I expect?

It seems to me that this neurologist is treating you based on your lack of insurance. I would see if there are any other neurologists in your area. You may have to do some searching before you find one who is kind enough to treat you on a sliding scale basis. Or as Harry said, try to find a state funded hospital. With the amount of weakness you have, you really need a diagnosis.

Susan

 
Old 08-13-2006, 11:42 AM   #10
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Re: what can I expect?

Alma.....i have some questions to ask about your neuropathy.You said you had a nerve test and it didn't show anything so how then can you be diagnosed with neuropathy from the DR's point of view..Secondly your weakness is in your feet after 3 to 4 yrs so has it spread to your fingers as well ?? later !!
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Old 08-13-2006, 05:57 PM   #11
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Re: what can I expect?

Thanks for the reply. The nerve test I had was three and a half yrs ago.No it hasn't spread to my hands. My left leg is the worst the numbness started on a small spot in my back and slowly covered more area came around to the frontand covered just the left half of my stomack. From there it slowly continued down the front of my leg . When it got to my knee I went to the DR. He tried neurotin for one month and it didn't help. Thats when he sent me to the frist neurologist and he ran the nerve test and an mri. He said they didn't show anything . Told me to loose some weight and go back to my family Dr. for some blood work for arthritis.After three and ahalf yrs. the numbness had went on down the front of my leg and to the end of my toes and started up the bottom of my foot. Family DR. says he still thinks it's neuropathy. He tried another med. It didn;t help He did change my arthritis med.and it seams to help with that. He then sent me to the next neurologist thinking he would run more test. I think I have already told the rest from
.there. As for as how he made the diagnosis I guess from my symptoms and t
I couldn't feel vibrations in my toes on either foot.If I do have it what are some of the things I can expect?

 
Old 08-13-2006, 06:35 PM   #12
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Re: what can I expect?

alma123
What are your symptoms? Have you seen a neurologist and been tested? Do you have pain or numbness.Please let us know so we can give you some answers if we can.boo

 
Old 08-13-2006, 07:25 PM   #13
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Re: what can I expect?

thanks for the reply i have seen a neurologist i have pain and numbness
in my feet an legs i also fall if i dont have my cain
my balance is bad and my legs are very weak

 
Old 08-14-2006, 12:40 PM   #14
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Re: what can I expect?

alma have you been tested for low B12. Mine was very low, and the symptoms were first numbness in both feet,especially the top of the left foot.Then it changed to severe pain on the top of the left foot,with loss of balance.Dr.s just said,"don't go barefoot".Stupid Dr.,stupid answer.I was finally diagnosed with Pernicious Anemia,and get monthly B12 shots.I don't think too many Drs. even think of this,so ask to be tested with a blood test,and get your count number,Drs. may just say "it's low or your okay" get the number.please let us know what is going on.Good luck,Boo

 
Old 01-26-2007, 06:49 PM   #15
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Re: what can I expect?

Some statins can cause nueropothy if you take them for a long time.

 
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