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

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Old 10-16-2012, 01:11 PM   #1
Thefarouk
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Default 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
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Old 10-16-2012, 01:38 PM   #2
mrsD
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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?
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Old 10-16-2012, 02:26 PM   #3
Thefarouk
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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
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Old 10-16-2012, 03:18 PM   #4
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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
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Old 10-16-2012, 03:38 PM   #5
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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.
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Old 10-16-2012, 06:23 PM   #6
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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!
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Old 10-16-2012, 10:34 PM   #7
Stacy2012
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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!
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Old 10-17-2012, 12:37 PM   #8
Thefarouk
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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
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Old 10-17-2012, 01:01 PM   #9
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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.
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Old 10-17-2012, 02:27 PM   #10
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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
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