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Old 06-22-2011, 05:52 PM   #1
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Neuropathy with no diagnosis

Hello to everyone! I am new to this forum & am desperately seeking help. I was just diagnosed with neuropathy but doctors have no cause. I am 44-not overweight and I am not diabetic. All blood work I have had done is perfect - vitamin D is a bit low but I am on supplements & sitting in the sun to bring it up. Heavy metal toxins test was clear too. I am in so much pain - having trouble standing, walking ( I fall over) and cannot keep my balance. Some days my right hand does not work well making it impossible to type at work. I have been struggling with fatigue for 2 years but now I am exhausted walking 20 minutes. The nerve issue must have started about 1 year ago but I didn't realize that is why I kept dropping my cell phone - I thought I was just a real klutz! It all just seems like a bad nightmare. I am currently taking neurontin but cannot get up to the next dose level without bad side effects. I take Ultram for the pain but it doesn't do much anymore. I have a hard time with meds because I seem to get side effects pretty easy. I truly do not know what to do! The doctor said he just needs to wait and see what new symptoms may appear to know what direction to go in. So- wait and see- hmm - I am not willing to wait around until I collapse on the floor! Is this a normal view for doctors- wait and see? Any suggestions are appreciated and if anyone has a success story on how to beat this I would love to hear it!

 
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Old 06-23-2011, 12:02 AM   #2
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Re: Neuropathy with no diagnosis

Hi and welcome to this forum, first thing that come to mind was B12 levels, low b12 can cause fatigue, trouble is what our docs call normal is very outdated and is only counted by what is floating around in the blood not in the cells were it counts, Japanese neuropathy experts say a score of below 500 is suss of a deficiency, might want to find out what your score was.
You can buy supplements, b12 methylcobalamin is the best form as it is the active form and goes to work straight away, 1 -5 mg daily is a good amount, taken on an empty stomach for max absorption.

There are no guaranties with supplements but might be worth a try, it certainly won't harm you.

good luck
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Old 06-23-2011, 08:30 AM   #3
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Re: Neuropathy with no diagnosis

Hey Jillian....sadly I'm in the same boat..in 07 it started...my feet hurt...got worse...as of now the pain is mid calf to my feet in both legs and from the wrist to fingertips on both hands...also my balance SUCKS too...I use a walking stick if I'm going to be walking much...also use a shower chair...both help a lot and if you don't have either I'd suggest getting them...

I've seen 4 different Neurologists and have had MANY blood/zap tests...ankle nerve biopsy and a spinal tap...I'm now 42 and also NOT a diabetic...and still w/o an answer as to why I have the issue....

I've never been a guy to "wait" hence me seeing 4 neurologists....if you haven't get a 2nd/3rd opinion...it can NOT hurt and just maybe you will find a good answer.

I'm currently on 3600mg of Neurontin a day...but Kath is dropping off my script for Lyrica today...doc is starting me out on 150mg a day and see how it goes....I was on it for a while but my ins stopped paying for it...changed ins and going for it.

Sorry you are dealing w/all you are and hope you have a great Thursday.

You are NOT alone.
J

Last edited by RisingParrot; 06-23-2011 at 08:35 AM.

 
Old 06-23-2011, 11:55 AM   #4
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Re: Neuropathy with no diagnosis

Thank you so much for responding! Kind of nice (but sad too!) to know there are others out there struggling along with me - although I hope you find answers and get better soon.

My B12 is actually 822 - I tell you I look super on paper! I was thinking of the walking stick too - but I am still struggling with feeling like a complete idiot that I can't walk right at 44!! Sure is scary. My Primary doc had no answer, the Rheumatologist had no answer, so that's how I ended up with the Neurologist who found the neuropathy. If you have no diagnosis, how do you fight this?? Maybe I'll try one more neurologist just for sure. I came home early from work today so I could just try to refocus - a little sunshine, yoga, relaxation. Trying to laugh & keep things in perspective... could be worse!!

Thanks for the input - I appreciate it! Well Wishes to you!!

 
Old 06-23-2011, 12:06 PM   #5
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Re: Neuropathy with no diagnosis

Quote:
Originally Posted by Jillian1000 View Post
Thank you so much for responding! Kind of nice (but sad too!) to know there are others out there struggling along with me - although I hope you find answers and get better soon.

My B12 is actually 822 - I tell you I look super on paper! I was thinking of the walking stick too - but I am still struggling with feeling like a complete idiot that I can't walk right at 44!! Sure is scary. My Primary doc had no answer, the Rheumatologist had no answer, so that's how I ended up with the Neurologist who found the neuropathy. If you have no diagnosis, how do you fight this?? Maybe I'll try one more neurologist just for sure. I came home early from work today so I could just try to refocus - a little sunshine, yoga, relaxation. Trying to laugh & keep things in perspective... could be worse!!

Thanks for the input - I appreciate it! Well Wishes to you!!
Jillian...I'm 42...so I know about not being to walk well at a young age and not wanting people staring at me....but after a bad fall in the shower(I hate the awful balance that comes w/this)I said screw them...got my walking stick(I went to REI and got a spiffy one ) and shower chair...both are great...I keep it in my Jeep so I have it if Kath and I go out/to dinner or am having one of THOSE days and want it...

For sure hit another Neurologist...can't hurt and never know maybe they WILL have an answer....the one thing I got told that really got my blood boiling...after all the testing the 4 Neurologist said to me "I can't treat you until I know why you have PN".... THEN FIGURE OUT WHY!!!!!

I found this on here somewhere and have posted it before....but thought it might help....I TRY and not let PN ruin my day and run my life.


We all have to make choices. Either we can sit around and have a "pity party" everyday or we can paint on a happy face, pull up our bootstraps, and do something--anything--to take our mind away from the agony. Most of the time, I choose to paint on that smile because my family and friends do not want to see me in pain. Our loved ones cannot do anything but encourage us, love us for who we are now and not what they wish we could be, and be understanding when we are unable to "keep up.” I try to stay positive in my daily thinking. If I get in a rut, I kick-start my brain and say, "knock it off!” I pull weeds in my garden or I take a nap…anything to stay focused and engaged. Remember, you are responsible for your own happiness. Smile, even if it hurts.


Take care and hope the day gets better
J

Last edited by RisingParrot; 06-23-2011 at 12:08 PM.

 
Old 06-23-2011, 12:44 PM   #6
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Re: Neuropathy with no diagnosis

Jillian you did not mention if you had MRI reports of your brain or cervical spine. Spinal cord compression can cause your symptoms also.
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Old 06-25-2011, 12:08 AM   #7
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Re: Neuropathy with no diagnosis

Glad your b12 levels are good, did your neuro do an emg and nerve conduction studies and if so what were the results ? meaning is it the motor nerves affected only and any axon or myelin sheath damage ?

If you see another neuro I suggest seeing a neuro that is a neuropathy specialist.

best of luck
Aussie

 
Old 06-25-2011, 04:24 AM   #8
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Re: Neuropathy with no diagnosis

Hi Jillian, firstly you are not alone with this very cruel disease, yes disease I know it sounds horrible however in time you will realise its just a work, as for your condition I pray it does not deteriorate over time. I was diagnosed with Idiopathic Neuropathy several years back. I was on lyrica, the side effects are as follows fatigue, memory loss, poor concentration, zero libido, go in to a static stare for no reason, fowl tasting breath etc etc. My ex wife took off because she didn't want a cripple to look after along with most of the house, it was a very trying time. I use to get up at 5 and drive 120km each way to work everyday with as little as 2 hours sleep. The pain was unbearable, picture someone cutting your toes off with a blunt hacksaw stabbing them at the same time while pouring pure alcohol on it, that is my symptom everyday of every hour I am awake. If you can avoid lyrica like many others take do it, that drug nearly killed me. I feel asleep at the wheel and hit a tree, yes I was tired but lyrica contributed immensely. Now i take slow release tramadol 200mg along with 50mg of endep or amitriptyline, and ibuprofen. I get up each day have breakfast and go to work, always a smile to my work colleagues saying what a day it is, little do they know I have had very little sleep and in chronic pain. I was 44 when diagnosed, not a diabetic no heavy metals no chemo, no aids. I did enjoy a beer which no longer happens, I did some research and found the base of cholesterol lowering medication can cause PN. I have a 40,000 dollars spinal cord stimulator in my back to try and ease the pain, so far it hasn't worked so they are going to turn the leads upside down to the base of my spine. I do not know what I have done to deserve this, nerve pain is the hardest to treat. I was a person full of life, couldn't sit still for a moment, loved travel, wining and dining movies dances etc. Now my life is at a stand still, I do not think about tomorrow because I can barely get through this day. My question to you and to others that reads this is do you work still are you able to get through the day or do you stay at home. I have no choice but to work, it is hard very hard and because a lot do not understand how I feel or the pain I'm in it is soon forgotten. I hope I havent bored you too much, but sharing a problem can cut it in half. Feel free to ask what every you like, as mentioned your not alone.

 
Old 07-06-2011, 02:26 PM   #9
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Re: Neuropathy with no diagnosis

Hi Jillian. I'm sorry for what you're going through, but as RisingParrot said you aren't alone.

I'm 44 & it took 3 yrs before I was diagnosed with SFN. I had gone to my primary dr, a neurologist, a rhematologist, two vascular drs, another neurologist, a neuro surgeon, a podiatrist & then finally a 3rd neurologist who's actually had experience w/SFN & knew the signs of it. He did a skin biopsy which confirmed the diagnosis. Finally after 3 yrs there was a name for what I was experiencing & I wasn't completely crazy!

Then came all the different medications. Many, like you, I couldn't take b/c of the side effects I would get from them.

Gabapentin helped the best. At least it was one I could tolerate, but I was up to 3k mg of it a day, which is a high dose, like RisingParrot is on. Then they switched me to Lyrica, 150 mg a day. This seems to have the same results as the gabapentin with less dosage so I'm happy with it so far. I still take vicodin every day. It's the only thing I've found to help.

I use a lot of lotion b/c my feet seem so dry.

When my feet burn I use ice packs, but you have to be careful b/c of our loss of feeling you don't want the feet to get too cold.

I also use Capezine, which is an over the counter arthritis medication. For some reason it does help with some of the symptoms. I use the one with the cushion so that I don't have to actually touch the stuff with my hands b/c it is difficult to get off.

I also elevate my feet throughout the day.

Like you, they don't know what's causing this. I've been tested & retested but all my blood work comes up good.

I am B12 dificient, however, I take supplements for this & my levels are good. I've had this for close to 20 yrs & it's been well under control.

I've had all 3 typed of diabetese tests, all are negative for diabetes.

So like you, and it seems many others here, they don't know what's causing it so all they can do is treat the symptoms.

I hope you find some answers & some relief. Hang in there.

 
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