Hey guys, I'm new. I have some questions about my situation.
 

Hi guys, I've been browsing along the forums for a couple of days and I figured I should get involved. As it stands right now I have (potentially) neuropathy with (at this point) unknown cause in my feet and possibly my hands. I'm just going to throw a lot of information down in hopes you guys can help me make of it what you will...

I am a 19 year old male. I have been tested and have normal results in/with:

-B12
-Thyroid
-Diabetes
-Lyme Diasease

MRI:
-C-Spine
-Brain
-Lower Back

I've also had a normal EMG.

Currently I'm awaiting the results of this test from Athena Diagnostics. My Neuro says it should help, but I can only hope.

Inititally, my feet felt like they were tingling a bit and I felt the same in my pinky and index finger in each hand. This started in mid January and was on and off. I saw a neuro at home the 2nd week of March who told me I was fine and not to worry.

In the third week of March, my foot pain turned into a burning sensation. It was then while back at school that I saw a second neurologist. She put me on Gabapentin. I started on 100mg 3 times a day and quickly moved up to 300 3 times a day. Although, to be honest I'm not sure if I notice any changes.

This all brings us to present day. While awaiting the Athena test, no one quite knows what's wrong with me although I feel like I'm starting to feel something in my calves. Would this be too soon for the spread? I'm going to assume no. (I must note that to this point all my sensations have been symetrical...is that odd?)

I also feel like I have something interesting to ask as well as note. Is neuropathy ever caused by stress? I looked online and didn't find much, but I ask only because I had what I thought was a high risk HIV exposure (it wasn't) and I started doing a lot of reading online about HIV before I got any of my symptoms. I didn't understand that PN was a symptom of late stage HIV/AIDS and I thought that my foot feelings were that. I obsessed over having HIV for 2 straight months.

Now I've since been tested (and I'm fine!) but it my feeling that maybe I caused these problems by thinking about them too much. I mean it's just too strange to me that I never had these problems at all and then I thought I had something that caused them and all of a sudden I got them for real. Strange thing is, I haven't been scared of HIV for weeks yet my problems persist.

I just don't know what to do. It's awful having these symptoms period, but having them so young is the worst. I look forward to any advice.

Sorry if this was confusing.

Oh, I have been considering purchasing some B-12 online through GNC to take. Which do you guys recommend and how much should I take?

you are very young to have neuro symptoms...
 

but one thing you should explore is Gluten intolerance/Celiac.

This causes neuropathy in some people. My son gets it in his hands (he plays guitar/bass) at times. But not his feet. So he tries to follow GF diet as much as possible and it helps. (he is young and he does fall off the wagon sometimes).

We have a gluten board here with helpful people and posts (in the stickies) on how to have it tested.

Do your symptoms come and go?

Low blood sugar will also cause this.. it follows consumption of high sugared drinks and food.

A reputable brand of B12, in at least 1000 mcg dose. Methylcobalamin is even better than the usual. Jarrow is one many use, but several other reputable brands exist.

Many order online, and iherb.com is one popular source.

rose

thanks
 

Thanks Guys,

First off, MrsD- Thanks for your swift reply. As for my symptoms coming and going, they don't really come and go that much, but they seem to work almost the opposite of a lot of Neuropathy. Like right now, they are worse in the morning and get better as the day goes on.

And Rose, thanks for the b12 rec.

I'm still having trouble coming to terms with my symptoms. I just find it so odd that I was worried about getting Peripheral Neuropathy, something I'd never heard of before in my life, and then--Boom! I got it. I'm hoping it's some deep rooted anxiety. But at the same time, it seems to be creeping up my legs. Is there any timeframe for how long that should take?

Also, is it safe to just start taking B12?

Yeah, take the B-12. Can't hurt you and might help. I just started taking it last week. Gives me lots of energy and I see a teeny bit of improvement. Tomorrow I start taking Fish oil also. I got all the information off of this boards. Mrs. D., Rose and others know QUITE A BIT!!!

I don't believe stress causes symptoms, but stress can make them worse.

I bought my B-12 from iherb and it's the methyl B. Very cheap!!!

Take care, keep us posted.

Melody

Okay, great! I just bought 1000mcg bottle..I figure that should be enough.

snfkazee375
 

You had a scare and a lot of stress.Please take care of yourself,I mean
It young one..Come back and post good luck and your always welcome.
You had a :eek: now have a :hug: Many blessings Sue

Another thought is prediabetes, did you have a 3-5 hour Glucose Tolerance test ? with your B12 levels, what score did they class as normal ?
Rose always recommends AT LEAST 1,000mcg of Methylcobalamin, you can't have to much of it, some Neuropathy patients overseas are treated with 36,000 mcg a day, of b12 methylcobalamin.
No, there no exact time frame with this disease, for some it only stays in their feet or hands and doesn't move away, but it can move up your legs, stop at your knees and others it can go body wide.
Stress can and does aggravate PN, large amounts of sugary food can aggravate PN patients even to those that are not prediabetic or diabetic, alcohol can also aggravate the nerves.
anyway good luck,
Brian :)

...
 

Thanks for the kind words, guys.

I will ask to have the 3-5 hour test done...as for my B12 levels I want to say they were at or above 700.

I've been trying to look at the foods I eat and I've also been careful to curb any drinking. Which I mean wasn't an issue anyway because I'm from the states and Under 21...right? right? :p Oh, college.

Your B12 looks to be fine, its just some doc's will say 300 is normal which its not, its low , jeez, it took me 3 months of B12 Cynocobalamin supplements to get my b12 score up to around 700, i think i must have been running on empty :D :D
I didn't realize how old you were but it still won't hurt to get a Glucose Tolerance done, its normaly more for people over their 40's and are overweight & don't do a lot of exercise, but there is no golden rule that fits all, its best to cover all possibilities.
all the best
Brian :)

You're getting some good advice here--
 

--but given your age, and the fairly rapid appearance and progression of your symptoms, two things come to mind: toxic exposure, or autoimmune reaction.

I would be very interested to see your results on the Athena test you reported, but that test is far from complete as reagards antibody tests.

Have you had any of the connective/vasculitic antibody tests for the anti-nuclear antibody and its variants? These antibodies are often found in the autoimmune vascultic/connective tissue disorders, and neuropathy due to vasculitis can flare up fairly quickly:

http://www.neuro.wustl.edu/neuromusc...tml#vasculitis

I'd also suggest you look both at teh Liza Jane spreadsheets at www.lizjane.org and Dr. Latov's clinical research paper (in our useful sites section) on serum tests for neuropathic conditions:

http://www.questdiagnostics.com/hcp/...eralNeurop.htm

This will give you some idea of the number of autoantibodies that may result in neuropathy--this is one reason that searches for a cause are often long and expensive.

Hon.

I know it's hard with college, parties, socialization. but do me a favor AND STOP ANY DRINKING RIGHT NOW.

Take the B-12, don't eat any sugar, (or anything with preservatives).
Do the Hippocrates Diet. Look it up on the internet. Yesterday I was told to go to a website called Raw for 30 days. It tells you all kinds of foods to avoid diabetes, reversing diabetes. Not that you have diabetes BUT you obviously have something going on with your peripheral nerves.

So you'll get your sugar tested. AND NO MORE DRINKING.
No smoking either (hope you don't smoke).

But there is one vice you can still do. Start canoodling!!!! (Safely)

lol
Melody

A person who is attempting to recover from a nerve problem, whether B12 deficiency related or not, should aim for at least 1000 on their test result (and that should be with no B12 being taken for at least a few days before the blood sample is drawn).

Better yet, just take the 1000 mcg per day (or more) and never ignore it.

rose

Gnc
 

Hey guys,

I went to GNC yesterday and bought some Alpha Lipoic Acid 300, Fish Body Oils 1000, and more B12. I've done some reading about these three things, and hopefully they will help. At this point, I'm at a loss as for what to do so I'll try anything.

And, oh yeah, no drinking. :cool:

Alcohoh to excess can cause PN problems,usually over a period of time.
The medication to treat Aids causes PN..Gook luck. Sue :)

Neuropathy (try using term "differential diagnosis")
 

Hi guy,

Well, in trying to think about what sorts of things might be causing your problem.

First, about the HIV scare: people who do get HIV get sick. That is, initially (as I understand it) they maybe just feel like they've got a cold, or not-so-bad case of the flu. Have you been sick? (There *are* other viruses in the world, as you've said.)

About other possibilities. You can try doing a Google search using the terms "peripheral neuropathy" and "differential diagnosis." Look at the Cleveland Clinic page, and some others. Usually they have boxes with lists in them; look down the page and check out those out.

About you personally. Was anything else happening, other than the HIV scare, before this?

Are you athletic? They spray pesticides on sports fields. Pesticides and neuropathy; well, think "Lou Gehrig" as the max example.

What part of the country are you in. You mentioned testing for Lyme disease. It takes a while for antibodies to develop . . . have you seen a rash, or any red spot (that gets bigger with time)?

Arsenic, as pointed out by MrsD in another thread, is a prime suspect. There is arsenic in those green-colored wood products. If you were working on a construction project or anything similar, consider chemical exposures.

Do you take any kinds of medications? There are lists of neuropathy-causing medications at those websites.

Do you live near a coal-burning power plant? Have you been playing on the banks of the Carson River during your entire childhood? (It's an EPA SuperFund site, for mercury, that will probably never get taken care of . . . )

Do you eat seafood? You can look up "domoic acid" and also look up "ciguatera poisoning." See if those get you anywhere . . .

And FWIW, I wouldn't rely on doctors to find answers either. I've seen what they have to offer and am totally not impressed. If they were even half as good as they should be, the greatest amount of discussion on these lists would be "who is the best doctor . . ."

:wink:

p.s. about alcohol
 

Yes, it's certainly true that alcohol to excess will cause neuropathy.

However, there should be other clues -- because most people who can't handle alcohol get mean, or manic, or otherwise act different (as in 'slightly or very deranged').

So the neuropathy would be one clue. The personality, with and without alcohol, could be another.

reply
 

Hi NTLegend,

Thanks for your reply.

To answer your questions.

1. Yes, I was sick in the time following my HIV scare. HOWEVER, I have been tested past the window period and according to numerous doctors it really shouldn’t have been a factor for me anyway. Apparently, I spent a lot of time freaking out about a very very low risk encounter. So I’ve pretty much ruled that out.

As for me personally, nothing was happening before this. And that goes for physically problems as well as mental ones. That’s what sucks so much. At this time last year I was worrying about my senior prom…now I’m wondering if I’m going to be able to walk correctly next year.

As for being athletic…not too much. At least nothing that would bring me in constant contact with pesticides.

Geography- I live in Rhode Island, but go to school in Syracuse. I had a Lyme test awhile ago, but am thinking about having another one to be sure. I’m also trying to find a lyme specialist.

As for meds,

I took Ceftin for a week but stopped because it gave me a rash. Then I started taking Doxycycline. However, initially, I didn’t see any problems with the doxy. I was put on Gabapentin for my neuro issues but haven’t taken it in 4 days and I don’t really notice a difference.

I don’t eat like any seasfood.

Thanks for your help thu sfar.

Sounds like ~
 

Well, to me it sounds like arsenic. Which is available in drinking water, and sometimes in ordinary food (like salads, etc.). Pesticides. Playground equipment and other 'weather treated' wood. Some medications, believe it or not. It's odorless, tasteless, etc.

Here is an old description. But good descriptions are hard to find, so please consider reading this:

http://www.pubmedcentral.nih.gov/pic...4&blobtype=pdf

It's a .pdf file of a page -- it's necessary to scroll down about halfway, in order to find the title ("Chronic Arsenic Poisoning Masquerading as Pernicous Anemia").

Surely there are other possibilities, but check this one out . . . just in case.

Hi. I'm sorry your going through this as well. I'm not as young as you as I'm 28 but I know how hard it is to see your friends just playing around when you can't. I try to hold to hope and stay in the moment. Though I fear the future of this too. Do you have real time support like family and friends. I really hope you reach out and explain your fears and ask for help. You don'y have to be tuff with emotions and this is upsetting. I'm realizing especially as I'm new to this is you really have to ask ? to doc cause they don't always offer and may have to see a lot of profesionals. I have been to so many and also push for tests. I have pushed for tests that there was a 1 percent chance it could be but better safe then sorry. Make sure to also bring your other tests results to each new.
Now on a motherly note. When I was your age I took my body for granted and I'm not saying your doing that. I will say there are things you can't control but things you can like alchol,drugs,smoking. You can't play with fire and I know for me because of my past severe anorexia when new health issues come up I have to see if its because of that regardless if I'm healthy now. So don't just look at what your current is but when you were 16 for ex that could impact your health now. Feel better.

Thanks for your kind words...I do have a support system in place, but this is just tough to cope with because (after searching) there don't even seem to be that many reported cases of 19 year olds having this. I hate being a cautionary tale of sorts.

But I never really abused my body...occasional drinking but never any true benders or anything like that.

Buy hey, doc appt today...we'll see how things go.

Trust me I know about being the unusual case. I was in a cardiac unit when I was 20 and it was totally like that. On that note is why I say you really need to push for tests even if 1 percent chance. Even at the doc the other day they were like its very rare in your age. Like I said I would rather be safe. Cover all the bases. Good luck and keep us updated.

Hi! I hope you get some answers soon. But with respect to your questions about stress: Stress can make anything feel worse -- that doesn't mean it caused it. Be careful not to fall into the "blame the patient" pattern.

That said, my whatever-it-is gives me Raynaud's symptoms in my hands and feet, but not from cold. It is usually provoked by too much exercise -- or getting upset. Like, if I cry, my fingers turn blue. How's that for weird? Meds help, but so does self-hypnosis and other relaxation techniques, particularly if it was set off by upset rather than exercise.

I hope this helps. In any event, keep talking to people, and try any mode of treatment that seems plausible and isn't dangerous. Just do it one at a time, so you can tell what works. And keep a journal to document symptoms; that's very helpful in diagnosing