I have had it with doctors. They don't care, have the time, and all think that my problems are stress or anxiety related. I have no other option than to turn to online support and take matters into my own hands. I figure that this is the best place to be. You all seem to have a ton of experience and care deeply for others suffering .

I'll try to sum this up. Thanks ahead of time for reading.
2 years ago, started having burning in my bladder and pelvic region. No infection was found. I was visiting the washroom every 5 minutes at its worst. Saw uros, and ob/gyns.
Tried a drug called detrol for urinary urgency, which did nothing.
Pelvic pain persisted, so after many months we did laparoscopic surgery. I had endometriosis, which was removed. My symptoms didn't go away.
I then started having burning down my thighs. (Actually I think this started before the surgery) . I had xrays, ct scans,ultrasounds, blood work. Nothing out of the ordinary. Devastating. This is when I started with narcotics for pain.
A few months later I started having tingling in my fingers . Sometimes it was in my face as well.
We did an MRI of my brain to look for signs of MS, but everything was normal,
So, pelvic pain, urinary urgency, tingling in extremities, burning in my thighs, and now my lower back. Wow, could things were getting worse.? I exhausted the alternative health community..saw osteopaths, pelvic physiotherapist, naturopaths, acupuncturists, it was all too expensive and did not do anything .
My life really went downhill by this time..lost my boyfriend because he could not handle it.
The burning/skin on fire/hot needles feeling slowly made its way all over my body, and my hands became numb every time I woke up ( to this day). The back of my neck, to my feet, is either burning, numb, or in pain, everything seems to change and rotate. Sometimes I get a crushing ,vice like pain in my arms.
I have been waiting over 6 months to see a neurologist, but my pain doc assures me that I just have a messed up nervous system that is over excitable??!!!
I now take lyrica 100mg at bedtime, and oxycodone 10mg 3 times a day.
I have thought about suicide many times. I had to quit my job and have been waiting for disability for 3 months. Some days are unbearable. Sometimes things are under control, but as soon as I wake up in the morning, I feel like an 80 year old. My body is stiff, sore, numb burning. I can't deal anymore!I am a 29 year old female from Ottawa, Canada.
I also take alpha lipoic acid, high potency fish oil, and when I remember, a liquid b complex.

Does anyone have any ideas on what the hell is going on?
I have low blood sugar, low blood pressure, screwy hormones, PCOS, and had a concussion this April. But the symptoms began long before that.

Thanks a million. I'll consider anything.

Im sure MrsD will have suggestions for you and ask you for specific test results like B12, thyroid, Diabetes, vit D and other things.

Spend time reading everything in this forum, especially the forums at top about supplements.

I just wanted to say that you found a great place to lean on and I am so very sorry for your heartache and pain.

I will be saying a prayer and blessings for you tonight.

Hi Feather,

I have not been on the boards very long But know that there are alot of people here to help and support you. I am still trying different things that have helped me with my PN. MrsD and Stacy have been a great help to me.

I just wanted you to know you are not alone.

Feather,

I am so sorry to meet you this way!

I don't have much in the way of insight but will tell you this group has been really good for me. I am sure you will find the same to be true!

You'll be in my prayers!

. Amy

Welcome to NeuroTalk:

Did you ever have your B12 measured? Should be over 400pg/ml which are US units. Can you get your result?
Many lab ranges remain outdated and give lower numbers as "normal", when in fact they are low enough to damage your nervous system.

Also you need Vit D measured.

Were you ever tested for Candida in the bowel? Do you have frequent yeast infections? Candida when out of control dumps aldehyde byproducts into the blood, and this causes burning and other skin sensations.

Did you take alot of antibiotics for your bladder? Ciprofloxacin?
MacroBid? Both of these drugs can cause nerve damage. The Cipro is thought to be more or less permanent, but some people recover from the MacroBid with time.

What dose of ALA? Is it the old form? What exactly is in the B vitamins you take? Can you list them here, or at least the brand so I can look them up?

PCOS typically gives an insulin resistance metabolic syndrome, and eventually causes elevated blood glucose. This may be mixed with LOWs, as the blood sugars crash, but PCOS patients usually end up on metformin to control the highs. So that needs more exploration perhaps.

Wow guys, thanks first of all for reading my story. I can imagine that you all have travelled down similar roads.
My last b12 test was 235. The reference range considered normal is anything above 133. The naturopath told me this is borderline in the alternative health care community.
. I supplement with about 2000IUs a day of the liquid variety d3. My level was at a 75( reference range being 75-200)
I have suspicions that my uncontrolled blood sugar may at least partly be responsible for all of this, although I have done many glucose tolerance tests and only the most recent random test showed lower than normal levels. To which my female doctor said "eat a piece of chocolate or a spoonful of sugar when you feel shaky, these sensations might be from that"
Lol. 8 years of medical school right there.
I did a candida cleanse and have been on a prescription for it once. I don't get yeast infections, although for a while I was convinced that this was a fungal/parasitic problem. I did a parasite cleanse with no success
What else am I missing (I can't see the previous responses) oh yes, I am slightly hyperthyroid. I am not tired, or overweight. the b 50 complex is by Natures Harmony. I don't have the motivation to copy every ingredient. Sorry.
I know my adrenals are shot, from a lifetime of anxiety. My Dhea sulfate level was a 4.7. ( That of a 50-59 y.o). I was 28 when the test was taken.

Any other ideas? Its exhausting going through the possibilities,isn't it my fellow sufferers.
Thanks for the prayer. I just found out that I will not receive any employment insurance

Anyone else too sick to work and not getting financial help fast enough? My pain pill prescriptions alone are 45-65 bucks out of my back pocket. Ugh!!!
Oh one more tidbit..
The only food intolerance that was a biggie on my tests was eggs. So I avoid those.


My tablet is driving me nuts. I'm going to end it there. Thanks again my kind hearted virtual friends. Merry Christmas

Oh yes! One more abnormality in my blood work (at least 3 times) was very low creatinine levels. My GP said this worried her, yet a urologist said that this just means my kidneys are very efficient . Sigh...
Oh and ...my ferratin level was a 12 a year ago. The range is 11-145, so it did not show up as abnormal. Lol. Its amazing how they decide what is normal for each individual body eh??!

wow. Your B12 is LOW. Mine is 3,000 and I still take B12 everyday. What kind of B12 test did they do? Because most use a standard one that does not test LIVE B12 so it gets all the inactive B12 in the gut also. So imagine what your REAL number of LIVE B12 is.

I would get on sublingual B12 imediately. I use Jarrow 5mg and Enzymatic Therapy 1 mg because these are the 2 namebrands I found to be tested.

Also, I would suggest buying a blood glucose meter from walmart, buy a cheap one like Reli, the strips are fairly cheap and they are within 10 pts of the perscription expensive one. Mine registered 8 points higher ( i got reli) than my moms expensive perscription one.

A meter is the most important tool you can own. Morning before you eat is a fasting and should be under 100. Then the most important number is when you test exactly 1 hour after you begin a meal. One hour will show your highest number at its peak and at the 2 hour mark it should come back down to normal.

Anything OVER 140 can cause organ/body/neuropathy damage.

No doctor will tell you to worry at 140. They dont care. All they care about it when you get high enuf to need medication, in my opinion.

If you truly wanna test, eat 1 cup of cooked white rice. From the first bite begin the 1 hour and then test. That will be like the drink they give you.

Nobody cares about you more than you. Begin to take control of your health first by realizing that. Don't trust what a doctor tells you, go research and prove it out yourself. Sorry, but I have had enuf experience to know that I am the boss and the doctor works for me now. i took my health into my own hands. Honestly? I have received MOST all of my help from my own research and places like this.

B12, Dr's Best Benfotiamine, and magnesium have been amazing help to me. The benfotiamine practically controls my burning episodes.

I suspect that B12 level was not in the US? Is that correct?

I have to know before I convert it to US units.

If you can't post all the ingredients... What is the B12 dose in that supplement? Is it cyanocobalamin?

Is this your product?
http://www.nationalnutrition.ca/detail.aspx?ID=3746

Without details as to what type of B12, I would assume it is cyano. 75mcg is not much. This is a Canadian product, so converting to US units....your B12 which is probably pmol/L:
We have a subforum here that explains many things. Also our sticky threads at the top of the first index page on PN have many links and lots of information too.

pg/ml=318 pg/ml Which is low but not alarmingly low.
235 divided by conversion factor .738

Ranges have changed about 10 yrs ago in US medicine. It is not an alternative thing, either.
I see where you are the ranges are very low, and still reported as "normal".
Here is a 2003 medical site for doctors to learn the new protocols in US:
http://www.aafp.org/afp/2003/0301/p979.html

So I think your first thing to do is get methylcobalamin and start with oral 5mg daily on an empty stomach, for 3 months, and get retested. iherb.com ships to Canada and has several suppliers including Jarrow which is in Canada.

You should get that level up to at least 1000 US units or 738 pmol/L in Canada. Low B12 is very damaging to nerves.

I still would like to know if you used any drugs in the past that are known PN triggers. Fluoroquinolone antibiotics or Flagyl, or Macrodantin. Two of them are used for bladder infections. The Flagyl (metronidazole) is used for vaginal trichomoniasis, which may have been tried in the past due to your pelvic symptoms and endometriosis. The fluoroquinolones like Cipro cause nerve damage which is thought to be permanent, at this time, and can have been anytime therefore in the past.
Macrodantin PN would possibly reverse in 2 yrs or so, in some patients.

Magnesium supplements are also very helpful for PN.
This is my magnesium thread:
http://neurotalk.psychcentral.com/thread1138.html
Aim for 1/2 the RDA for now, and that would be around 200mg a day elemental. Avoid oxide form, as it is not absorbed.

There are over 100 causes of PN... your first attention should be to the most common causes, and fixing any nutrient lows that may be causative.

Hey guys! First of all, merry Christmas :-)
Now, back to reality. I have Now brand 1000mcg b12. I was taking it daily for a while but stopped when I didn't feel better. I just took one and will continue.
Yes, that is the bottle of B50 by Natures Harmony. Thanks for doing the research!
I'm sorry but I don't know the conversions from American to Canadian.
Sorry for forgetting to add info on past meds.
Yes , I used to get very bad utis and have taken Macrobid more times than I can count. (8 times at least) .
I have been on Cipro at least once also. Holy shnit, these could cause nerve damage? Why the HELL didn't anyone warn me???? I feel so angry.
I gave taken one anti fungal Med about a year ago. Sigh...
I do own a blood glucose monitor but have trouble with it. I hate drawing blood and the meter almost ALWAYS says error. It was expensive too.
I thought it was unnecessary since I am not diabetic . Only last month did a doctor suggest testing my levels.
What other info do you need? I feel like I'm getting somewhere.
This is a miracle to have this information. Bless you all. I'm trying to enjoy my Christmas doped up on oxycodone and lyrica. Not fun for anyone...