New to PN and the site, anyone know the odds?
 

My name is Bob, and I started suffering from PE about 2 months ago. It started as a loss of sensation/tingling in my legs, lower back, and arms - especially the outer part of the arm, but including the hands. Within a week I was using a walker, and then spent 6 days in 2 hospitals - that time included a spinal tap to check my spinal fluids for virus & signs lf menangitis - but no such evidence was found. During the prior 3 months (May-July), I'd made some significant lifestyle changes including stopping drinking, and exercising nearly daily - I was already eating fairly healthy (not alot of processed foods, most food made from scratch here in my kitchen, high use of organic product). I am not diabetic, nor pre-diabetic... in fact the only out of range number during my last physical was that my HDL's should be above 40, and mine was 37. There was no specific B12 indicator.

When I was first in the hospital, I was told these kinds of things can take days/weeks to recover from. Since then I've learned a more ugly truth - some people never recover. Some get a partial recovery. Some of you folks have been dealing with this for 10+ years. When doctors dont know for sure, they seem to generally default to the "b12" deficiency theory, because they have no other answer.

Thank you whoever started this site, I finally feel like I have some folks I can talk to who understand and may have some answers.

Q1: are there any official published numbers on % of PE patients who achieve a) a full recovery, b) a partial recovery, and c) do not recover? Ive searched the internet some, and cannot find any solid study numbers - I'd really like to know what my odds are.

Q2: any other suggestions on dealing with this maddening condition appreciated

Currently I'm taking 1000 mcg of B12 and Norwegian gold broad Omega (5 different kinds of omega oil). I have 9 PT, 9 balance and 13 OT exercises + as much treadmill as i can do (up to 1.0 mph at 6 minutes) and I walk without the walker or cruches as often as i can (about 60% of the time). I can do some basic chores (wash dishes, do laundry), but still cannot get up from the floor if I fall. I try to get thru half the exercises every day, and I rotate them.

I've noticed my endurance/energy tends to trail off about mid-afternoon, so evenings I'm mostly using the walker.

Please tell me there is an escape from this hell! I cannot drive safely (my foot sometimes cannot find the brake), I can barely type, and cant walk up and down the halls of work. I'm still on short term disability, but if I remain in this condition for another month, I'll have to switch to long term, which likely means I will lose my job. How difficult/must time does it take to start getting SSI if I am declared disabled? Will they help me move, given that I'm in an expensive house at the moment, and will clearly have to sell/move if I'm reduced to SSI income. What about getting into supplemental medicare programs (insurance) to offset Medicare expenses, given I already have this damn thing. The future seems so bleak...

Thanks for any help, and listening. Peace and joy to you,

/Bob

Welcome to NeuroTalk:

It sounds like you have significant motor problems, is that right?

Normal test panels do not automatically test for B12.

I think you need to do that first thing, and get the test numerical result. Do not accept "normal"...as ranges in US are not updated to the new information and treatment. The lowest normal now is 400. And with symptoms like yours, you should be at 1000 or more.

Here is the B12 thread, explaining methylcobalamin.
http://neurotalk.psychcentral.com/thread85103.html

What is PE? Did you mean PN? If you'd like me to change your title (you cannot edit that yourself) I will do that for you.
You can edit your posts for 24hrs.

If possible think back to a trigger for all this. Did you take antibiotics for an illness? Have a stomach virus/food infection, flu or other infection. Get a vaccine?
Injury, exposure to something noxious like solvents, pesticides, etc? Do you take statins for cholesterol?

A rapid onset PN with substantial loss of function requiring a walker in 2mons suggests a CIDP...which typically is autoimmune, and often treated with IVIG.

Perhaps you need another medical opinion?

Thanks MrsD for the info.

Not quite sure how to interpret the motor question - i have enough leg strength to walk without a walker, albeit with falling risk because of my balance, and I weigh 430 pounds - so strength wise, I seem ok. If I look at my limbs I can make them do what I want - but the balance that enables walking without thinking about it eludes me.

I'll ask my Dr about my B12 levels.

Yes I meant PN - was probably thinking too much about the exercises (PE) - I have read that one of the keys to successful recovery is to keep using those muscles, so I'm trying to do everything I can.

As to a trigger, we could never identify one. They literally told me they have no idea why this hit me, and that often that is the case. The thing that causes this theory (B12) to make any sense to me is because of the radical lifestyle changes the prior few months. I went from being a 14 year alcoholic, ending mid-may of this year, after my best friend had to be put down and it got me thinking about life not being forever, and the things that being an obese drunk were keeping me from. So I went from someone having 12-15 beers a night, to having 0-1. I also cut out almost all 'bad' food (highly processed, canned items, prepared meals, fatty cheeses) and switched to a less (not zero) carb, higher protein, low fat diet. I get between 1000-2000 cals/day and have taken off over 125 pounds. The thinking was I made so many changes so quickly, I could have screwed up my B12.

No cholesteral meds, my last overall colesteral was 137.

CIDP? IVIG? Researching now...

/Bob

CIDP? IVIG? - ok read up on that.

You may be onto something there. When they did the spinal tap they only told me they were looking for signs of a virus, or similar - nothing about antibodies. Also, they did not do an EMG, nor said nothing about a nerve biopsy. I do not have any of the facial/voice/breathing symptoms, but have every hand/leg one I found - describes my condition to a T.

I'm going to take this info to my Dr next visit (next week) and demand to know why these were not considered - I've already have a pending question out to him about both outpatient OT/PT and whether we've come to the time to consult a real PN specialist because the team at UofW medical center suck.

/Bob

When people lose weight very quickly, there can be a low Omega-3 situation... it is nicknamed slimmer's paralysis.

Not enough Omega-3 fats in the food you eat so you cannot
fix damage to nerve sheaths...with are lipid based.

There is a thread here from a fellow who stopped drinking and recovered his nerve functions ...here it is:

http://neurotalk.psychcentral.com/thread104096.html

Vitamin B1 is the most critical after the B12. Benfotiamine form of it is better than the old original thiamine.
When you ask for the B12 test, also get a Vit D test at the same time.
Bring both number results here so we can see them.
At least you should be on a B-complex-50mg... that is the typical treatment for alcohol withdrawal.

Have you had nerve conduction studies to see if you have axonal problems?
Another thing that can happen is that heavy metals or toxins that are stored in fats, can be released quickly when you loose fat stores in a short time. I'd get tested for arsenic, mercury, lead, and cadmium if you can.

Also, I'll fix that title then.

Great advice was given as usual from Mrs. D. Great you are losing weight. I hope you can get your tests and I agree, get quality Omega 3 for myelin, add Benfotiamne and B12. There are other great supplements also including antioxidents that are needed by the nerves.

Recovery can take a while, great you are here. SO much good advice.

I know you said you have a good diet and are not diabetic, but I have had wonderful results with lowering sugar to almost nothing and the same with simple carbs like rice, pasta, bread, potatoes..

My blood sugar is great, but our nerves do not like spikes and lows. Keeping glucose level is very important. I even take mine at home so I know how just a few potatoes, rice etc can make the level high.

There is a book called "Minding my Mitochondria" that talks about nerves, mitochondria and diet. Great book.

I eat no gluten also. There are so many things we can do to feel better and I hope you will very soon!:)

I had to go to a lab and order correct LIVE B12 blood tests on my own since my doctor did not offer the correct test. Most doctors are behind on correct information on B12 so educate yourself completely and don't rely on him.

You care more about you... knowledge is power. I am learning to investigate everything MYSELF and not just rely on a "normal" test or what a dr feels is unimportant. I have stopped being in the passenger seat and I am now driving.

good luck! This place and these people are amazing!

Thank you everyoe for the suggestions and encouragements... My next dr visit is next tuesday - i should have more answers then.

I take it due to lack of reply, that there are no numbers/study on percentage of those who get a full recovery, a partial recovery, and no recovery? I'd really like to know the odds and i dont trust what my doctors are saying now since they keep changing their story.

/Bob

It is difficult to predict.

Fast onset PNs typically are blamed on viral infections.
They can come on from poorly cooked chicken and other foods, because of a bacteria called Campylobacter.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC88896/

You really need conduction tests to see what is going on with you.

Don't take the B12 for a few days before your tests. And get the Vit D test too. Might as well get those out of the way.

Good luck at your doctor's appointment.

I am that fellow that MrsD referred to above. I am an alcoholic, albeit a sober one. I drank for about 20 years daily, now I am 440 days sober. I pretty much went from a healthy average sized person to a drunk in a wheelchair. If you follow the thread on that you will see that 3 things worked for me. One, I quit drinking and started eating. Two, I forced myself to exercise a little bit a day to keep the legs moving and three, I took MrsD advice and went on a vitamin regime of:

Centrum Men Under 50, Multivitamin, 200-Count Bottle
Doctor's Best Benfotiamine (150 mg), Vegetable Capsules, 120-Count
Jarrow Formulations Jarrow B-right Complex, 100 Capsules

I am now walking without my cane most of the time, can work FT and I feel great.

Now, I dont know what percentage of PN sufferers beat it, but in my case I pretty much did. I will most likely have many lingering effects over my lifetime, but where I am at today beats the hell out of where I was 1.5 years ago.

Stay positive, force yourself outside and you have a chance! I am walking proof of that.

Ice in VA

Is that what you take? I've been taking B-complex, B-12, B-12 shots. I'm not having much luck as far as improvement goes. I guess I'll have to reach out a little further and try the benfotiamine. And the Jarrow mixture. I'll have to take the Centrum over-50 though!

That's a good story, bro. I've got about 9 months off the bottle. At least my symptoms have stabilized and not spread, I can say that much, I've got the sensory PN in my feet and it hasn't affected my motor skills, but it's atropied my leg muscles and caused all kinds of unreal pain in my feet. I will say that the doc got me on a time-release 24 hour 200 mg neurontin pill and that's helped A LOT. Plus the gabapentin. Glad you're working full-time, I've had my worries about the same thing.

Um, yep. Had to get a couple refills, but I think I started back in March...I get everything via Amazon...

I had the tingling feet, zero balance, couldnt stand or walk, numbness, but I had no pain...none at all.

I also have a drink called 989 everyday...its full of good stuff and all natural.

Thanks, Icehouse.

Like you, my symptoms include tingling, numbness, lack of balance, inability to walk normally... same tingling/numbness in my hands, which is impacting my typing... and since I cannot feel my feet, I keep missing the brake pedal, so I'm not safe to drive ATM either... as a software engineer, I depend on being able to go to/from work, and type at a high rate, so this condition is really threatening my work - which is part of why I'm so anxious for some idea of whether I'll get over this or not.

(warning: pontification coming) The reality is, instead of focusing on the future obsessively (which creates my anxiety), I am using cognative therapy to try to retrain my brain to focus on today. Whatever happens with the job is beyond my control at this point - and reminding myself of that helps me stay focused on today instead of tomorrow.

I'll be asking my doctor to either test for, or produce from my records, levels for B1, B3, B6, B12, A, D, Thyroid, Pantothanic Acid, Biotin, and heavy metals. I'm also going to ask why we did not do an EMG, and suggest we should consider an EMG, conductive testing, and perhaps a nerve biopsy.

In the mean time, I've made new friends here, which is also helpful, as I live a very independant and isolated life and have almost no support group. Thank you again, all.

Peace and joy,

/Bob

Well, luckily you are in IT like I am, and telecommuting is an option :) I went from walking to a wheelchair overnight, then to a walker, then to a cane fulltime at Christmas ...now I use the cane sporatically. I find stairs with no railings a real challenge and I really cant walk more than 2 miles without being exhausted.

I really do hope you get better, I have been there and done that and its no fun.

B12 was 234 in the hospital, we're getting new tests done on a much broader spectrum tomorrow. I was lastr in the hospital in August so who knows how much the value has changed since I've been on B12 therapy. Also a follow up visit with my neurologist, but I need to find a new one because this guy has one of the worst ratings I've seen (59/100).

Sensation still improving, albeit slowly - still cannot feel the bottom of my feet so I keep missing the cars brake pedal - will have a hand control installed. Typing still sucks.

Will provide the updated numbers when they're available. Thank you again for all your support.

Peace and joy,

/Bob

Wow, well the lab was an interesting experience. We scheduled 13 factors for testing, they drew 15 vials from me. Never had 15 vials of blood drawn in one sitting. Given the season, maybe I just fed a few vampires :eek:

/Bob

If you are currently taking vitamins, and getting blood work done, the results will not reflect much. Often they show false highs. I hope you discontinued all vitamins 7 days before the testing.

Son of a... :mad:

Nope, doctor didnt say a thing about it. And it isn't like he didn't know - in fact, I brought in my new multi-vitamin and omega supplements during my last visit, when we ordered the tests. Making me think he wants me to see high numbers so I'll stop bugging them about it.

it was even a fasting test, so I went 12 hours without food. Well, at least its better to know. Thanks again, MrsD. Will look at the numbers and post them here, and then figure out whats next.

At this point, my recovery has really slowed. I haven't felt much of a change in the tingling/numbness in my hands and lower legs for several weeks. Walking is a bit better, endurance is up - mostly because I'm "doing" those things - got 1/4 mile in on the treadmill this morning, and I walk on the treadmill every day except Sunday.

/Bob

I'll be waiting. ....

Which is of interest to me as I am a warfarin patient (Afib '2010, has not responded to any attempts to normalize, including cardiovert).

So now I have to wonder if my warfarin is having an affect on my PN...

/Bob

It might.... but you know I searched more than once for people, and didn't find a direct link to the Coumadin. But then not everything is documented, and in older patients, doctors tend to grasp the most likely diagnosis. If you are diabetic, they often won't look further (which is a shame too).

For example if you tell them you drink alcohol...and you are not diabetic...bingo they will diagnose alcohol induced neuropathy.
This eagerness however is blind to documented DRUG induced neuropathies, because doctors don't want to get involved in blaming a previous (or same self doctor) for giving you a drug that caused PN. They are very reluctant to blame each other. But they will blame alcohol for people for have been sober for years... we had one person who was sober for 20 yrs and still was given the alcoholic diagnosis!

The closest I can come to any useful info is this drug plugged into
http://www.drugcite.com/?q=coumadin
These are FDA reported side effects:
expanding neurological gives this:
I bolded the terms that could be construed as numbness and/or tingling/burning.

Thank you again, MrsD. You are a font of good information, and I have come to a better understanding of my condition thru the efforts of you and other members of this site.

Unfortunately today is a sad day. I just visited with my Neurologist. I have not had any noticable improvement in my hands or feet/lower legs (numbness/tingling/loss of tactile) for several weeks now. We haven't gotten the blood work results back yet (or they are at my primary doctors office - i just left them a message), but he says given the lack of progress, I should start thinking of this as a permanent condition, and start working with social security to be declared disabled.

The car conversion is going to run $2k-$3k which I cannot afford at this point, so I'm stuck not driving. Nearest bus stop is 1/2 a mile down a steep winding hill. Short term disability lasts until 2/16/13, then its up to the insurance board to decide if I qualify for long term (which per their guidelines I likely dont because I can walk, bathe, shower, eat), but without my fingers to type well, my career is over.

Peace and joy to all of you, and thank you again for your help. I wish you all the best.

/Bob

Hogwash. I run a computer training center and I specialize in finding people with multiple felonies & long records jobs. If you can think you can work!

One word Bob: telecommute

Fins up and solve that problem, life goes on and it goes on well !!!

Let's see what turns up on the last testing.

I assume you had immune globulins tested? ANAs and all that stuff?

Let us know what your vitamins tested at also.

Some PNs can be turned around with supplements. But if you have a hereditary type, you will be stuck as there are no treatments for those.

There are voice activated softwares all over now. ;)

A clue
 

Well it has taken a longer time than I expected to get results back and try to progress my PN. Today, I think I got a big clue though.

I requested a new neurologist because my old one could never answer why, and had essentially given up on me, trying to refer me to other doctors who arent even available until March. Fortunately my primary care physician doesnt tolerate that well either, and I'm working towards a new appointment with my new neurologist, who is one of Seattles 50 best doctors 5 years running.

However, we also finally got the results of all that bloodwork back, and while I dont have the full report yet (I'll get it on Tuesday), turns out my Vitamin D is way low. Came back at 12, and my understanding is the normal range is 30-100. Mind you, I'm already on a daily supplement that contains 800IU of D3 (Cholecalciferol) and was on that when the blood was drawn. My PCP is sending in a prescription for a mega D suppement, which I should go pick up in a few hours.

Too bad you're not my neurologist, MrsD, you'd of nailed this on the first day. Now lets just see if this does the trick.

Thank you all again for your support and love.

/Bob

The RX your doctor is writing won't work. (unless it is D3)

All RX D is D2 which is not active in humans.

The new normal is 50 not 30.

The general rule is 1000IU D3 for every 10 points needed to raise. Let's say you are 10 so you will need 4,000 IU D3 daily
and get retested in 3 months or so.

If you take what doctor orders...the RX D2, high dose, nothing much will happen and you will not progress:

This explains more in detail:
http://articles.mercola.com/sites/ar...d-mistake.aspx

Getting the testing was good. But sadly doctors don't treat the results properly yet. D3 is OTC and not expensive. You can get any type you want. I get mine at Puritan's Pride, online for pennies a day.

I am a bit behind in this thread, but congrats on 440 days Icehouse!!

another interesting read regarding D2 vs D3. In this case, the doctor has prescribed the following:

Vitamin D (Ergocalcifero) 50,000 IU CAPS with a dosage of 1/week. I have ordered D3, as Ergocalcifero is D2 (Fat soluable), PP 5000 IU. I have a Dr appointment tuesday 11/13 and will discuss D2 vs D3, and whether we want to change this.

Can a person take too much D (say I took both the D2 1/week and the D3 daily)?

/Bob

I predict your doctor won't know at all about the two versions.

If you take D3, you won't need the other at all.

The only reason the doctors order it, is because it remains in their old outdated therapeutic references.

You can go ahead and take it. But don't expect much from it.

and
Have you read this link and watched the two videos on it?
http://neurotalk.psychcentral.com/thread92116.html

Now is the time before your next appointment.;)

Things are changing rapidly about Vit D supplementation.
It will be a while yet for doctors to understand it all.
It is not unlike the poor interpretation of B12 levels, which continue now a decade later inspite of medical continuing education to the contrary about making 400pg/ml the new low for humans.
This article on THAT from 2003, written for doctors:
http://www.aafp.org/afp/2003/0301/p979.html
There are still doctors who don't understand ORAL B12 treatments today. :rolleyes:

And BTW both forms are fat soluble. I can't see any reason for using D2 (ergocalciferol) today at all. D3 is even less expensive.

Ok back from the latest checkup. Actually my Dr did know the D2/D3 issue, and requested D3 - apparently the pharmacy filled it as D2. We discussed, I'll be ceasing the D2 and start taking 10,000IU/day of D3.

Most of the other blood numbers are in

Vit A 0.39 mg/L (in range)
Vit B1 whole blood 163 nmol/L (in range)
Vit B6 75.4 ng/mL (high)
Vit B12 303 pg/mL (in range)
Vit D 12 ng/mL (insufficiency)
Cadmium <0.3 ug/L (in range)
T&H 1.93 uIU/mL (in range)
Arsenic whole blood <10.0 ug/L (in range, but a bit high)
Lead whole blood <2.0 ug/dL (in range)
Mercury whole blood 4 ug/L (in range)

Pending: B3, B5, B7

Finding a decent neurologist is being difficult - my doctor said, humerously, most neurologist suffer from Ashburies :) the point being, not many go into the field. The new neurologist just reviewed my chart and also wants to send me to UofW, but my primary care wont accept that the waiting list is into March. Since he knows the other neurologist he recommended, he's going to call them and they're going to have a 'chat' about my case, and he's "sicking his bulldog" (one of his med techs) on the folks at UofW until they agree to see me.

Some speech recognition software and a $3k hand control unit for the brakes on my car, and I may even be able to get back to work.

Hanging on...

and thanks again!

/Bob

I've bolded your B12....it is in range only for the outdated ranges! The new lowest low is 400pg/ml.
So you need to start oral methyl B12 now, at least 1000mcg/1mg a day on an empty stomach. It would be best to do 5mg a day for 3 months and get retested.

Arsenic can come from natural sources, some foods, and well water. If you have pressure treated wood wash hands after handling. Don't breathe fumes from burning pressure treated wood either. Best not to burn it at all.

The B6 is not really too high compared to some ranges that go up to 90.
labs vary. edit to add: I went back and reread this thread, and you were taking vitamins when you had the testing. This is probably why for the B6. But it makes the B12 even more concerning, if 303 was the result coming back when you were supplementing a multivit.
Also, multivits may contain Vit K... look at your label...it they do they will interact with the coumadin.

When a pharmacy gets an RX that just says Vit D 50,000 IU...it will fill with D2, because there is only one D on RX and that is D2. It remains on RX because of historical reasons, and its status was never changed by the FDA.

more data and a possible clue!
 

Well after my doctor had to make a few unpleasant phone calls, finally got in to see the folks at UofW neurology center. Met the doc I saw while i was actually in the hospital, got more data and some hope.

The whole time, the theories around my PN have centered on my B12. Problem #1 - she did recommend B12 injections (weekly) post release from the hospital, but its only noted 1 place, and the pharmacy, my doctor and I all missed it. I should have been on B12 shots this whole time. Those will start soon as I can get to my doctors office. She was happy I was up to 303, but wants me much higher - over 500 (hey, where have I heard that number? :D)

She also did some tests (and we re-did them today, waiting on results) for co-factors to B12: specifically Methylmalonic Acid and homoscysteine. According to her, while my B12 was barely within range at the bottom end, both these cofactors were very high - which leads her to think this is still B12 related. If I understood correctly, it sounds like the enzymes my nerves need are created as part of the Krebbs cycle, and the high level of cofactors (i didnt get the actual numbers, but i will), is leading to polymylamic breakdown.

While I still clearly have neuropathy, the palpable tests were better - in the hospital i was having no physical reactions to reflex tests - now I have some, but insufficient reaction with slightly better results on the right side, slightly worse on the left.

Hopefully this theory will pan out, and kicking those B12 levels way up will finally knock this thing. If so, though, the question becomes why are those cofactors so high/why is my B12 so low? Could it be related to the rapid weight loss?

/Bob

What the MMA and homocysteine show is that your B12 is not working properly.

This can be due to methylation problems. The shots if cyanocobalamin type need to be methylated and if you cannot do that due to genetic mutations, MMA will remain high in spite of them.

That is why people with problems with MMA and Homocysteine typically use methylated forms of B12 and folic acid (methylfolate).

If you cannot convert cyano form and methylate it shots will not work.

Bent from here had 23andme DNA testing and this thread
explains more:
http://neurotalk.psychcentral.com/thread179732.html

Mutations in the MTHFR area mess up the methylation of B12 and folate and hence MMA and homocysteine would be elevated.
He is now going to get further testing in this regard.

I know it looks complicated but if you read it more than once it all starts to make sense slowly.

Your best bet is to take oral methylcobalamin 5mg a day on an empty stomach, and 800mcg Metafolin daily (by Solgar). Both of these forms are methylated and should improve your MMA test and Homocysteine. Most doctors don't even know about methylB12, and that oral is as good as injections.
You can do this yourself. The Metafolin costs more than the methylB12, but both of them are still affordable.