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Old 08-05-2006, 05:04 PM   #1
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Doctor just told me I have Neuro

Ok.. quick background. I've have been having some issues with poor circulation, or so I'd guessed. The big toe on my right foot has been half "asleep" for about 2 years now, and sometimes the sensation spreads throughout that foot (mostly at night, when I sometimes get severe itching). Also, I have been having similar issues with my left arm for quite some time- years, actually. It falls asleep without my even laying on it. And the sensation sometimes spreads to the upper middle part of my back, where I get this burning, tingling sensation on my shoulder blade. Thanksgiving of 2000, I actually woke up and I couldn't use that arm at all. I was in a lot of pain, and I didn't get full use of the arm back for probably well over a month. I have no idea what happened. Maybe I laid on it wrong? There are some other wierd things I've been experiencing (chest pains for quite some time. At one point, bad enough to go to the ER). And more recently, constant cramping of my left outer thigh muscle. It's been going on for a few months now, and nothing seems to relieve it. So I figured I would once again see if somebody was willing to help me out- the last time I went to a doctor about these problems was just before I found out I was pregnant with my daughter, back in August of '01. I've always got MS in the back of my mind (as my mother was diagnosed about the same age I am now), but who knows what it could be.. many things? One bizarre thing?

Anyway, so I was at the doctor's on Thursday and began describing my symptoms. She asked if I ever had sensitivity on the top of my scalp (I do), and some other stuff.. maybe general questions, but maybe to determine Neuropathy? So she told me that I *have* Neuropathy. She didn't really get into it, or explain it or anything. She did say she isn't sure if that is my only problem, or if perhaps there could be something else going on, like MS. She did test my blood sugar, because she said a lot of my symptoms could be explained by Diabetes. However, I was at 108, ruling that out. She put me on 300mg of Neurontin. I take 1 pill a day for 3 days, then after that, I take them twice a day. I'm going back in two weeks for a follow up.

Some of you mentioned some test that I guess "diagnosed" you with Neuropathy. is this a definitive test that my doctor should have given me? I looked up the definition of Neuro on the web, and basically it fits my symptoms (though I think it seems like a pretty general description for nerve problems?). Do you think from just what I've written, that she's probably correct? And if so, what tips can you give to me now that I've more or less been diagnosed? Re: exercise, diet, etc? thanks for your advice, in advance!

 
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Old 08-05-2006, 08:27 PM   #2
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Re: Doctor just told me I have Neuro

Hi, welcome to the "wonderful" world of neuropathy! I think your doctor should have at the very least done an EMG/NCV. Those will show actual nerve slowing or possibly a problem with the muscles. A lot a things can cause neropathy, so lots of different tests are possible, depending on what the doctor thinks might be causing it. Is your doctor a specialist?

I'm in the poor house after a long list of tests, and my neuro still doesn't know what is causing my neuropathy.

 
Old 08-06-2006, 05:49 AM   #3
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Re: Doctor just told me I have Neuro

No, as far as I know, my doctor is not a specialist. According to the website of the dr's office she works out of, she's a Clinical Assistant Professor. In August of last year, she graduated from the Family Medicine Residency Program. Nothing about Neuro.

Today I'm supposed to start taking the Neurontin twice a day. But after about 2 hours of taking it, I get real tired. I almost feel like I've been drinking wine. I don't need to feel like that during the day. Argh.. Maybe after having taken it a while, that will go away? Do you know?

 
Old 08-06-2006, 06:56 AM   #4
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Re: Doctor just told me I have Neuro

Hey there......at 108 your already pre diabetic which can have an effect on circulation to the extremeties and can also cause neuropathy. A clinical assistant professor is not qualified to diagnose if you have neuropathy as there are special tests and the specialist own education,experience and judgement on this. Hard to tell you what to eat and so forth (no junk/fast foods) as you have no positive diagnosis and i've never heard of scalp sensitivity as neuropathy although not saying so, so best see an neurologist to get proper answers your seeking.......
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Old 08-06-2006, 08:32 AM   #5
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Re: Doctor just told me I have Neuro

it really does sound to me like you have much more going on besides just plain old 'neuropathy".and this doc you are currently seeing?get rid of her,at least for trying to Dx this particular problem.her knowledge and experience in this particular area is woefully inadequate and you will just end up being more and more frustrated as time goes on and she has you jumping thru all the wrong "hoops'.the first thing would be to obtain an MRI of at least the c and t spine areas to determine if there is any sort of problems that could be causing these types of symptoms.tho this sounds most definitely neuro related,i really don't know how she came up with neuropathy at this early stage without testing for other things first that could be mimicing symptoms.you could have an actual spinal cord issue or even herniations of discs or many many other possible problems up there.this just thoroughly needs looking into with the right type of doc.

i would skip any actual neurologists an go right to a neurosurgeon their overall knowledge of spinal issues is just so much more broad than most any actual neurologists is.your primary doc can acually refer you for that MRI so when you actually get in to see the neurosurgeon you will lready have the films he needs right in hand.it just saves alot of time as he would be sending you for one anyway.but it most definitely needs to be done.once you get that done you can either rule this area in or out as the possible cause.trust me,you have absolutley no clue at all just what is really lurking inside your body til you actually take that peek inside.i had/have whats called a cavernoma that was sitting inside my cord since i guess i was born but didn't have a flippin clue tili needed an MRI done onmy c spine to try and determine which one of my discs was actually the herniated one,well it showed my c 6-7 as the disc problem but also right below it,inside of my cord,there was this kind of glowing glob sitting right inside of my actual spinal cord.this led to a surgery with some good damage.

i am not trying to freak you out only to let you know that since you have never actually looked inside the c and t spine before,there is always the possibility of many different issues going on.thats all.just obtain that MRI.if nothing shows there,the next logical area would be an MRI on the brain with contrast.you could even just have all three of these areas checked out all at the same time.

i would just highly suggest getting the heck away from this doc at this point as she just does not appear to actually know much and you need knowledge and experience right now.i do wish you luck and hope they can finally find the actual cause of your symptoms.please keep us all posted,marcia
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Old 08-06-2006, 10:54 AM   #6
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Re: Doctor just told me I have Neuro

when she says you have neuropathy what does she mean ????????? Neuropathy of what???????? Due to what ??

 
Old 08-06-2006, 03:12 PM   #7
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Re: Doctor just told me I have Neuro

She didn't say much of anything.. She basically said I have neuropathy, and apparently whatever symtpoms I described to her made her fairly certain in her own mind- although she does seem confused about some of the problems I'm having, as they dont' all fit one mold. There was no real explanation of what it is- though I didn't specifically ask. Nor was there a mention of which type of Neuro. Of course my husband thinks at this point, she's "troubleshooting" till she finds out anything more specific. I don't want to be taking medication for something I don't have, but I'll take it for the two weeks and see if it relieves my symptoms.. and then hopefully based on the results of my blood test on Thursday, we can get a better look at what to test for during my next work-up. There are a lot of doctors in that clinic- (all of which have this "Clinical Assistant Professor" by their names, though all with different specialties). Not sure why I was given this particular doctor, but if she doesn't get more specific in two weeks, or even refer me to a neurologist, I'll go elsewhere. I've been dealing with these problems for years. I'm tired of waiting and wondering what the heck is wrong with me.



Question about the person who said I was "pre-diabetic" based on a blood sugar level of 108. I looked on an insulin website which said that a non-diabetic person "...should be (1) 80-100 after fasting (have not eaten in 6-12 hours) and (2) 100-110 after eating (typically 1-2 hours). " I'm not sure if you were meaning that I'm nearly diabetic when you said "pre-diabetic"? Or if I just misread (read into how/)what you wrote.

 
Old 08-06-2006, 04:04 PM   #8
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Re: Doctor just told me I have Neuro

I know nothing about diabetics, except that some diabetics have neuropathy problems.

I think you should be aware that the word "Neuropathy" is just that.
A Word.
It's not a disease in itself.
It's a word used as a "catch-all" description meaning for some reason your nerves are sending incorrect signals.

The trick is to find the reason (the cause) you are feeling sensations described under the catch-all description of Neuropathy.

Diabetics is one possible reason.
In which case controling the diabetic situation is helpful in getting rid of the neuropathy sensations.
BUT there are hundreds of other possible reasons and that is why people are advising to see a Neuro.

Many of us have seen many specialists, taken tons of tests and yet still cannot discover the specific cause of our neuropathy.
When no cause is known they refer to it as "Idiopathic" (maybe I spelled that wrong)
So we simply take the meds to control the symptoms while we hunt for the cause.

Be aware the meds given for neuropathy cure nothing.
They are pain maskers, generally anti-siezure meds.
There are many and your Dr should find the one that best masks the specific sensations you are feeling.
For any of them time is required..you start a low dose and work upward.. and it will build up in your system. 2 weeks is really not enough time for the sensations to be completely masked by these meds, in my opinion. Of course 2 weeks should tell you if you are getting no pain relief at all from the med.
I am one of the lucky ones since a very VERY low dose of Neurontin does an OK job of masking my Idiopathic Sensoral Axonal PN.

Last edited by snowmelts; 08-06-2006 at 04:15 PM.

 
Old 08-06-2006, 04:36 PM   #9
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Re: Doctor just told me I have Neuro

thank you for your post, snowmelts..

i have 60 pills in this bottle, and 1 refill. I'm going to guess that unless the doctor says otherwise, she'll expect me to just take the entire prescription's worth? but who knows. I did read earlier on the neurontin website that it could take 2 weeks or so to start feeling a difference. (i do wonder if/when i get off this med, what the withdrawal symptoms will be like?) so i guess we'll see what happens.

i think when i go back in, i will ask the dr anyway about these diagnostic tests- assuming the EMG and/or NCV tests can specify which version of neuropathy I have (IF that's what I have)? and or if she might then refer to me to somebody who can be of more help medically. Heck if anything, just explain this all a bit better to me.


in any case, thanks for replying.


sorry for editing this.. but does anybody here experience this symptom? Every now and then, there are parts of my body that are extremely sensitive- painful to the touch. it's like cold & burning at the same time. i might get this all of a sudden, for days- typically on the back of my upper left thigh. i might get it elsewhere on occasion, but typically right there. it is awful trying to sit down to go to the bathroom- the touch of cold porcelain is horrid.

Last edited by datgrlstef; 08-06-2006 at 05:38 PM.

 
Old 08-06-2006, 06:27 PM   #10
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Re: Doctor just told me I have Neuro

Quote:
Originally Posted by datgrlstef



Question about the person who said I was "pre-diabetic" based on a blood sugar level of 108. I looked on an insulin website which said that a non-diabetic person "...should be (1) 80-100 after fasting (have not eaten in 6-12 hours) and (2) 100-110 after eating (typically 1-2 hours). " I'm not sure if you were meaning that I'm nearly diabetic when you said "pre-diabetic"? Or if I just misread (read into how/)what you wrote.
I just posted a study (science daily) on these threads about a week or so ago about people getting neuropathy in feet and hands and not being diabetic but were pre diabetic or insulin resistant. Insulin resistance is at 110 so at 108 your near that number. Anyway i mentioned that not in a sense that your 108 is the cause of your problems but to keep that in the back of your mind as you are near a parameter that can cause neuropathy. Although you won't know unless a Neurologist has diagnosed you with proper testing...Best wishes !!
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Old 08-07-2006, 05:38 AM   #11
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Re: Doctor just told me I have Neuro

Quote:
Originally Posted by 6foot3
I just posted a study (science daily) on these threads about a week or so ago about people getting neuropathy in feet and hands and not being diabetic but were pre diabetic or insulin resistant. Insulin resistance is at 110 so at 108 your near that number. Anyway i mentioned that not in a sense that your 108 is the cause of your problems but to keep that in the back of your mind as you are near a parameter that can cause neuropathy. Although you won't know unless a Neurologist has diagnosed you with proper testing...Best wishes !!
Thanks for replying, and explaining it a bit more. I appreciate it. (I don't know a whole lot about Diabetes, though I had an uncle die after years of suffering from it. He ended up losing part of his leg, suffered some strokes, needed eye surgery.. finally died after breaking his hip. He never really woke up after surgery. Watching him suffer for as long as I knew him.. it was awful. Of course he didn't really take good care of himself, but it was still difficult to watch).

 
Old 08-07-2006, 09:18 AM   #12
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Re: Doctor just told me I have Neuro

For your question about what happens if you go off the meds, such as Neurontin. You don't go off cold turkey but rather in graduated step downs in the same manner you are beginning them in graduated step ups. However dosage your Dr is strating you in step ups..just reverse that to step down.
The reason for this is if someone goes off an anti-seizure med cold turkey they risk haveing a seizure, even if they were not prone to seizures for any reason before going on the meds. That is the ony withdraw situation.
Neurontin is not an addictive or habit forming drug.
however, as with any pill, some people experience possible side effects when takeing them.
If I take much I become even more a nervous driver.
I am a nervous druver to start wiht and I found pills made me even more paranoid about the car in back of me.
So I cut mine back a bit.

The 600 total a day dose of Neurontin you are currently taking is very low.

I take 600 total but am allowed 800 total on my perscription.
My perscription is for 100 per each capsule rather than 300.
I specifically asked to have it this way so I don't have to take any more than I can handel.
I take 200 in the AM
100 at least 4 hours later
100 4 at least hours after that
200 before bed.

Some people with very serious pain problems are prescribed up to 3400 total a day.
So be aware your Dr is trying to carefully manageing your pain but by giving you only the low dose to start is not giving you anything too high that can cause you a bad problem to stop if you experience problems.

Last edited by snowmelts; 08-07-2006 at 09:22 AM.

 
Old 08-07-2006, 09:49 AM   #13
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Re: Doctor just told me I have Neuro

Me again
I just reread your first post .. oh it says your parent has MS.
That one is scary and I can sure understand your worry.
That's something you definatley want to try to rule out.

I'm not a medical personal but I'd suggest A MRI or CT of the brain because of the genetic disposition toward MS,
Also CT or MRI the neck and upper spine because of the arm sensations.
An MRI of the lower and middle spine because of the leg sensations.
And a blood tests for B-12, (which you probably already took)

The Dr should send you to a specialist related to whatever those test show as needing attention.

The diabetic problems, or inability to assimulate B-12, or the spine (could be something on any area of it) or MS as well as physical accidents like car wreaks are the most common bad guys that can cause PN.
There are 100's of others, like heavy metal poisoning, but those are the most common ones.

Hopefully the Neurontin can help eleviate your pain while you go through all the testing.
Good luck in finding the cause and I hope its easily fixable.

A dozen years ago ago when mine hit it took 4 months to even get a PN Dx and a pain masker.
I was so very miserable.
Visions of living in a wheel chair danced in my head.
Nights when I though they would have to cut the darn leg off to get rid of the pain!
Of course none of those worries came to pass but it really was not a fun beginning.
There was the family DR.. a back clinic.. a Neuro.. At least now they are able to give some pain relief while you run the beginning gauntlet of tests and specialists.

Thankfully Now my PN sensations are nicely controled by Neurontin , even though the cause was never found.
Hang in there.

Last edited by snowmelts; 08-07-2006 at 09:59 AM.

 
Old 08-07-2006, 12:46 PM   #14
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Re: Doctor just told me I have Neuro

I'm glad your PN sensations are being controlled with the Neruontin now. That's great! It sounds like you have gone through a nightmare

I wanted to ask about the heavy metal stuff. I have had a permanent retainer (basically a metal wire on cement) in the back of my lower front teeth since about 1996. I have not had it removed because when it was time to remove them (after about2-3 yrs of wearing it), the Orthodontist said "why don't you try to leave them on as long as you can?. Then in '03, I called to ask before moving across country if I could get them removed. Turns out my Orthodontist retired, and my records are in lock-up somewhere. So I'd have to go somewhere new, pay money, etc. to have this approx 1" piece of wire removed. I'm having gum issues now, and I don't know if the wire has anything to do with it, but now I wonder if it might have anything to do with my other symptoms? I hadn't thought of it til recently, as a lot of my family has simliar (but different) neuro and auto-immune problems.. and they have been tested for the level of metals/mercury in their bodies.. it's affected them in various ways as well.

Last edited by datgrlstef; 08-07-2006 at 12:47 PM.

 
Old 08-07-2006, 06:40 PM   #15
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Re: Doctor just told me I have Neuro

Oh, then yes you want to mention that heavy metal thingy to a Dr..
All ideas count in this neuropathy cause hunt.

As for me..well I certainly don't appreciate mine at all but mine is tiny compared to what some members of this board have gone through.

If you'll read prior threads you'll find some members is really painful conditions.

There are some very brave members here.

Some members have happily discovered the cause of thiers and are getting relief.

You are not alone. This board is to help us all share info with each other when any kind of neuropathy situation, good news or bad, happens.

It takes time, but hopefully your Dr's will test things and find the cause of yours.
But untill they do, remember you have to be your own advacate in pressing to hunt for the root of the problem.

 
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