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This section is a place to share stories about Living with Neuropathy
Below are entries of those who have already shared their stories. We hope that you find their experiences helpful to your own situation.
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Neuropathy? or what?
by: Cindy
on Thu, Mar 13 2008
Hi I’m 37, and I’ve been suffering for a long time. Last summer it got much worse. I got pain in the bottoms of my feet. mainly the bottom of my heels.
Wanted to do things but found it was just too hard to walk. Next my legs started hurting, on an upward motion.
my knees and elbows broke out with what seemed like hives. once they finally healed they were stained a light red. Also the pain had moved up my back, I got a stiff neck that would not go away for like 2 months. Also my hands had started to tingle, with a burning numbing pain. Broke down and went to my doctor, money is really tight since I can’t work. She gave me tramadol, and got me an appt. w/h a rheumatologist, scheduled 4 months away… In mid december, i could not stop throwing up, my hot/ cold sweats were happening several an hour. I then started incontinence, a few times.
After 5 hrs of feeling like dying, it quit, but my whole arm was now numb (right)
So i went to the er, they did a ct, said everything looked ok. But he gave me 300 neurontin, 3 times a day. and told me to keep taking the tram, for pain. for what good it does. The neurontin, made me feel like a new person for two weeks which got me thru xmas, then it was back to the same old pain. Even tho I haven’t had the incontinence or the throwing up/diarhea, as long as i don’t forget to take my neurontin.
Blood tests revealed there was an inflammation in my body, but when finally getting to the rheum. she said that I was fine, and acted like i just wanted disability. She did not believe that everywhere she touched me it hurt.
She told me to go back to my own dr. it was her problem, she’d just have to try different things until something works.
I left there in tears, after waiting 4mos, i get 4 minutes of her time. I am so depressed, and I go for two days without sleeping. and not knowing whether i’m going to die or what. I now am waiting for a neurologist apt, later this month. I pray to God and all that is mighty that someone can and will help all of us who has this dreadful illness.. I now can’t lift my left arm any further than my chest. i can’t do much at all with it. I feel so helpless. not even knowing what is wrong, but atleast now after reading all these stories, i know that i’m not alone.
Comment on this
Comments
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Tue, Apr 22 2008
HI!! I've read your story..be brave!! Have faith.. If you 're only here in the Philippines i can recommend my neurologist here so you'll be taken care...Read
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Sun, Mar 30 2008
Don't lose hope. It has taken me since 2003 to find a great neuro. & internist but we are finding out what is wrong. Raynauds, Hughes Syndrome, ...Read
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Sat, Mar 15 2008
Hi It sounds like you need to see a Neurologist and have a N.C.V and a EMG Test if you still cant find out what you need to know you sholud have a MRI ..Read
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Fri, Mar 14 2008
I feel the same as you I am depressed and hopeless Everyone thinks I am lying when I say this is pain Sometimes if I step on my feet too hard it t...Read
March 2008
- When will someone actually listen?? - by Kristi Reckenwald - (Mon, Mar 31 2008)
My name is Kristi and im 28 years old. Almost 1 1/2 years ago i was found passed out in the bathroom at my daughters school. I had been having the worst pain in my left side mainly in my arm and foot for about 3 weeks prior, i was to the point i wish i could have pulled it out of the socket.
[more..]
- 25 neuropathy taking charge over my life - by Tonya - (Tue, Mar 25 2008)
Hi Im Tonya and this is my story, I first began showing signs of Neuropathy at age 22 in 2005 My feet used to swell and my legs used to be sooo hot they could cook eggs.
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- Neuropathy 8 years later - by Robert - (Tue, Mar 25 2008)
My name is Robert and now at 29 yrs old, I am still at square one with treatment. I have been on neurotin and elivil with no success.
[more..]
- NEUROPATHY FROM ANTIBIOTICS - by Ward - (Mon, Mar 24 2008)
I developed my neuropathy after being on Fluoroquinolone antibiotics (Levaquin, Tequin) for several years. Started just in my feet & was diagnosed as “small fiber neuropathy”.
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- 8 years later and still no answer - by Robert - (Mon, Mar 24 2008)
My name is Robert and I was diagnosed with bilateral ulnar nerve neuropathy back in 2000 while I was on active duty. I spent most of my time recovering from surgery and theorpy.
[more..]
- pure agony - by suzanne - (Wed, Mar 19 2008)
not only i ended up with neuropathy from chemo meds but i was also unfortunate to end up with nerve damage from a tumor on the thoracic spine (with radiation followed by surgery).
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- It comes with the territory. - by Beto - (Thu, Mar 13 2008)
In September of 1970 I returned to eastern TN from two years service in the US Navy’s Brown water fleet. The rockets, rpg’s, mines and assorted small arms fire were clear signals attesting to fact that our LST (tank landing ship) was not acceptable to our welcoming committee.
[more..]
- Neuropathy? or what? - by Cindy - (Thu, Mar 13 2008)
Hi I’m 37, and I’ve been suffering for a long time. Last summer it got much worse. I got pain in the bottoms of my feet. mainly the bottom of my heels.
[more..]
- NEUROPATHY ON LEFT SIDE - by ROBIN - (Mon, Mar 10 2008)
I AM 45 YEARS OLD AND A COUPLE OF WEEKS AGO FELT PAIN IN MY LEFT CALF. I THOUGHT IT WAS JUST A PULLED MUSCLE BUT THE PAIN STARTED TO GET WORSE AND MOVED UP TO MY HIP. THE PAIN IS SO BAD I WOUND UP IN THE ER
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- 23 and neuropathy - by Terri - (Fri, Mar 07 2008)
Hi, I’m 23 and I have been diagnosed with neuropathy about two months ago.
The pain is unbeliveable. I can’t sleep, I can’t work, and I can’t do anything. I have no energy at all.
[more..]
- neuropathy sufferer but noone believes it - by LTH - (Mon, Mar 03 2008)
I am 35 years old and was told by a neurologist 4 years ago that I had neuropathy but then I have been left to get on with it. I have tingling in my hands and feet at sporadic times during the day and wake up with my hands in spasm during the night and first thing in the morning.
[more..]
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