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!!

Welcome Coriny. :Wave-Hello:

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.

Did you have any other symptoms before Dec 14 or was this a sudden change?

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!

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

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.

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.

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.

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.

Coriny...
 

I'm sorry that you are going through this; I very much understand. Sjogren's can be hard to diagnose, and if your SSA-SSB antibodies are negative, they use the Schirmer eye test for dry eye & a positive lip biopsy that shows antibody infiltration. When this began for me 13 yrs ago, they thought it may be Sjogren's, but my bloodwork was negative. I've since found out dry eye/mouth is an autonomic nervous system symptom. Mine are only mildly dry.

I have the same doctors...either arrogant or apathetic. I have lost hope that a clear cause will surface. What I do know...I have crappy genetics as far as my lumbar/cervical spine, my vitamin D & b12 was low (low 200's for both at one time) I am heterozygous for several mthfr mutations, & I have a 7 mm Chairi 1 malformation that all my neurologists to date blow off as nothing.

Just keep swimming!

I was not on antibiotics for my teeth They did not hurt. They all became loose. I have been trying to get someone to listen to me about my teeth. I was devastated that they all had to be removed. All were removed at one time.
Then the trouble began. In less than three months I could not feel my feet and my hands. I do not have a lot of pain, but when I do, It is intense burning, shocks and cramps especially in my hands. My feet hurt when I am on them for more than an hr. 3600 mg of gabapentin and 60 mg of cymbalta. Hard to be proactive when you cannot stand.

Have you been tested for heavy
Metal poisoning?

Wow it sounds similiar to me since my symptoms started after wisdom teeth surgery. Were you given steroids or any after care treatment?

Thank you for caring mrs D. I have been tested for heavy metals. I was hospitalized for 5 days in Dec. Extensive work-up. Many more blood tests from the neuro-muscular specialist. I am still waiting to see the results personally. The neurologists have been horrible with feedback. I remain hopeful. His nurse sent me an e-mail stating that he could find nothing except evidence of neuropathy and he refused to fill out my long term disability papers for my employment and temporary disabled ID card. I cannot walk very well and certainly cannot drive. What a TOOL!!

I was given steroids for the first month. I could not really tell if they were helping or not. My pain was constant and progressing. I started with Prednisone and 300 mg of gabapentin. I am now on 2400 to 3600 mg of gabapentin and 60mg of cymbalta!! The cymbalta really helped me. Meds are complex. Works for some and not for others.

So your symptoms started before taking the steroids? Reason I ask is because I was given intravenous steroids during my surgery and my symptoms started a week later.

Yes. They did not really help me. When I was hospitalized, the neurologist stated that I should not have been given steroids, but, they did not cause this.