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Old 03-20-2015, 01:53 AM #1
Coriny Coriny is offline
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Default New to the forum..Need suggestions for poly neuropathy. Desperate!!

I have had numb hands and feet since Dec 2014. I am sure that many of you know the frustration of not knowing why. I have severe pain once or twice a week. Have had every test in the book including nerve and muscle biopsies. EMG showed moderate to severe sensory and axonal demylinating nerve damage, especially in the feet. Sock and Glove neuropathy. Have seen the neuro-muscular specialist from Washington University one time. He did not find anything. Has kept me waiting since January 30th for a follow up appt. I get an e mail from his nurse yesterday stating that there is no vascular problem. okay!! I cannot walk for very long and am very unstable on my feet. I cannot work. I cannot drive. I have no fine motor skills in my fingertips. I can type for short periods with my fingernails. I need suggestions on what to do now. The doctor at Wash U stated that I am not disabled and refused to fill out my forms for my job!! Really! HELP!! What do I do now? Where do I go? Who can I see that can help me? I am desperate!!
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Old 03-20-2015, 08:58 AM #2
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Welcome Coriny.

Does anyone in your family have symptoms such as yours? Have you seen a neurologist who might know if you have CMT or not. I am not suggesting that you do but what you say in your post makes me wonder.

There is DNA blood testing for CMT. It is expensive. I wish you well.
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Old 03-20-2015, 11:20 AM #3
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Originally Posted by Coriny View Post
I have had numb hands and feet since Dec 2014. I am sure that many of you know the frustration of not knowing why. I have severe pain once or twice a week. Have had every test in the book including nerve and muscle biopsies. EMG showed moderate to severe sensory and axonal demylinating nerve damage, especially in the feet. Sock and Glove neuropathy. Have seen the neuro-muscular specialist from Washington University one time. He did not find anything. Has kept me waiting since January 30th for a follow up appt. I get an e mail from his nurse yesterday stating that there is no vascular problem. okay!! I cannot walk for very long and am very unstable on my feet. I cannot work. I cannot drive. I have no fine motor skills in my fingertips. I can type for short periods with my fingernails. I need suggestions on what to do now. The doctor at Wash U stated that I am not disabled and refused to fill out my forms for my job!! Really! HELP!! What do I do now? Where do I go? Who can I see that can help me? I am desperate!!

Did you have any other symptoms before Dec 14 or was this a sudden change?
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Old 03-20-2015, 01:42 PM #4
Coriny Coriny is offline
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Welcome Coriny.

Does anyone in your family have symptoms such as yours? Have you seen a neurologist who might know if you have CMT or not. I am not suggesting that you do but what you say in your post makes me wonder.

There is DNA blood testing for CMT. It is expensive. I wish you well.
My feet certainly look like CMT feet, but there is no genetics. The arrogant specialist that consulted on my case does not have the courtesy to give me a follow up appointment to discuss his findings. I do not know if he tested for it. This all began with my teeth getting loose and having to get pulled. Weird!
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Old 03-20-2015, 08:32 PM #5
Coriny Coriny is offline
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Did you have any other symptoms before Dec 14 or was this a sudden change?
After having 28 teeth pulled because they all became loose after deep root cleaning on 9/11/14, I started feeling like fleas were jumping on me and biting. I was having heart palpitations every time I bent over quickly and while I was sleeping. The numbness started in my hands and feet at the same time and within a month of constant pain I had "sock and glove" neuropathy!! I have been numb ever since with one exception. Three weeks ago I felt my feet for approx 5 minutes after I got out of bed. After walking and smiling with happiness for that five minutes, the numbness returned with a vengeance. Spinal tap, MRI, tons of blood work, EMG and biopsies. Neuropathy confirmed, but cause.... unknown
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Old 03-21-2015, 09:20 AM #6
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My feet certainly look like CMT feet, but there is no genetics. The arrogant specialist that consulted on my case does not have the courtesy to give me a follow up appointment to discuss his findings. I do not know if he tested for it. This all began with my teeth getting loose and having to get pulled. Weird!
CMT feet can look normal or have high arches, flat feet, etc. As far as DNA blood testing it would be done by a place such as Athena Diagnostics. They do testing for many conditions.

http://www.athenadiagnostics.com/content/index.jsp

It would not be an ordinary blood test done at the doctor's office.

As far as your teeth getting loose and having to be pulled there must be some other reason for that. As you may know Charcot-Marie-Tooth Syndrome is not a tooth disease. Also, you mentioned in another post that your feet were numb and then for about five minutes you could feel. That does not happen with CMT. Symptoms do not get better. For example your feet would not feel better for a period of time after being numb. Also, your symptoms seem to have come on fast. That really does not fit the profile of CMT either. And no one else in the family with similar symptoms doesn't fit either unless their symptoms are not that obvious. CMT is a complicated syndrome.

Something else must be going on. I wish you well. Hope you find an answer.
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Old 03-21-2015, 12:19 PM #7
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Default seen a rheumatologist?

The sensory sock & glove pattern & tooth trouble sounds like Sjogren's syndrome. A rheumatologist can do bloodwork and further work-up to rule this out.
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Lumbar MRI March 2013: degenerative changes from L3 to S1. L3 and L4 have tiny annular tears with disc bulge. L5-S1 bilateral pars defects anterolisthesis (spondylosis/spondylithesis?) I have an annular tear here too, along with a conjoined left L5-S1 nerve root. Mild effacement of the thecal sac at the origins of the bilateral S1 nerve roots, left greater than right. Mild bilateral Neural foraminal stenosis.
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Old 03-21-2015, 04:38 PM #8
Coriny Coriny is offline
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The sensory sock & glove pattern & tooth trouble sounds like Sjogren's syndrome. A rheumatologist can do bloodwork and further work-up to rule this out.
During my cervical and brain MRI my neck had constant spasms. The tech kept telling me to be still. I told him that the spasms were involuntary. This was done during the acute phase of the illness. He should have stopped. I do not feel that I received a quality MRI of my cervical spine. The CSF albumin was 99 and the protein was 50. I do not know all of the tests that were performed in January. I am currently trying to get my medical records from the most recent battery if tests. My RF was slightly elevated. B-12, and thyroid fine. Ana negative. Spinal tap IGG and IGA negative. PE negative. Liver enzymes elevated...ultrasound revealed fatty liver..changed diet. I am a medical technologist. I know many of the tests. EMG and nerve conduction revealed fairly severe sensory motor peripheral neuropathy with both demyelinating as well as axonal features in both hands and feet. I have read about CMT and know I am not a candidate for the disease. It is all quite baffling and frustrating. I feel for the people that have lived like this for years. I am virtually a hostage in my own home. Having to find a ride for everything I have to do outside of my prison. Constant disappointment from the uncaring arrogant physicians. God is my Savior and I will overcome this or find a better way to deal with it.
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Old 03-21-2015, 04:44 PM #9
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Were you on antibiotics for those teeth? Which ones? Some cause nerve damage, you know.
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Old 03-21-2015, 05:07 PM #10
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Were you on antibiotics for those teeth? Which ones? Some cause nerve damage, you know.
I was just looking into this as I feel like my tendons are taking a hit and have been for awhile. I've just learned these antibiotics can cause tendon issues as well.

The neuropathy antibiotics occurs pretty quickly after use, doesn't it? I think I took Cipro quite a bit, but that was back in the 90s and before I knew better.


http://www.fda.gov/Safety/MedWatch/S.../ucm365302.htm

BACKGROUND: The risk of peripheral neuropathy occurs only with fluoroquinolones that are taken by mouth or by injection. Approved fluoroquinolone drugs include levofloxacin (Levaquin), ciprofloxacin (Cipro), moxifloxacin (Avelox), norfloxacin (Noroxin), ofloxacin (Floxin), and gemifloxacin (Factive). The topical formulations of fluoroquinolones, applied to the ears or eyes, are not known to be associated with this risk.
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