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-   -   New to the forum..Need suggestions for poly neuropathy. Desperate!! (https://www.neurotalk.org/peripheral-neuropathy/217665-forum-suggestions-poly-neuropathy-desperate.html)

jenng 03-21-2015 09:31 PM

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!

Coriny 03-21-2015 10:09 PM

Quote:

Originally Posted by mrsD (Post 1130847)
Were you on antibiotics for those teeth? Which ones? Some cause nerve damage, you know.

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.

mrsD 03-22-2015 01:43 AM

Have you been tested for heavy
Metal poisoning?

Tunaboy 03-22-2015 03:03 PM

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

Coriny 03-22-2015 07:37 PM

Quote:

Originally Posted by mrsD (Post 1130921)
Have you been tested for heavy
Metal poisoning?

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!!

Coriny 03-22-2015 07:43 PM

Quote:

Originally Posted by Tunaboy (Post 1131022)
Wow it sounds similiar to me since my symptoms started after wisdom teeth surgery. Were you given steroids or any after care treatment?

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.

Tunaboy 03-22-2015 08:16 PM

Quote:

Originally Posted by Coriny (Post 1131094)
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.

Coriny 03-23-2015 12:47 AM

Quote:

Originally Posted by Tunaboy (Post 1131101)
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.


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