New to this forum
 

I normally post on the TOS and RSD forums, but my SO's father was diagnosed with PN just before the "crash of OBT" and just when I promised I'd research for him. I've been weeding thru some of the posts here, and gathered SOME info for him (basically on magnesium, because strangely enough my own pain doc just had me start taking it, though I didn't realize there was a difference and I should be taking the citrate and not the sulfate, so I need to check my bottle!). But what I'd really like is a quick rundown from some of you, if I could. What I've been able to read so far hasn't been an account from a REAL LIVE PERSON, but more from a medical standpoint, and in medical-ese. I don't wnat that. I want to know from people who HAVE IT, or who knows someone who has it, what this is like...how it feels...how it progresses, what he can do to feel better, what meds you take, etc.

I'm not completely confident his dr. knows what he's doing. I dont' think he's seeing a neuro, but rather and MD. I'm not sure. Every time you ask him how he's doing, he says he's doing good (big fat liar that he is!). He's a FABULOUS man, we all love him dearly, but we can tell he's getting worse. His feet are getting more and more numb, and it appears his numbness has spread up to his knees and I can tell it's in his fingers now. I have TOS and RSD, so I do know how he feels in the upper body, but he's full of energy, and now he's slowing down and doesn't want to admit it. It seems to be spreading fast, and from what he is telling me, it doesn't seem like he's getting much in the way of medication. So what do you all take? What makes you feel better and all that jazz? And what can his sons and daughters (all grown, and all love him for the great man that he is) expect? How long until this takes over his entire body, or will it?

All input is appreciated. I'm leaving work now for the day so will check back tomorrow. For now, I'm forwarding him the info on magnesium, cuz I do think it will help him.

Hugs
LisaM

Hi. My husband had Idiopathic PN and it took years to finally find out why he had it. Stemmed from pinch nerves in his back.

Went to a chiropractic/neurologist and he still goes. Made a world of difference.

PN has a multitude of causes!!!!

Is this man a diabetic?? If he is, he must get his blood sugar under control.

Has he had different kinds of tests???.

My husband had every test known to man including toxic metal testing, hemochromatosis, diabetic testing, you name it, my husband had the test for it.

All came back negative.

Only when someone finally ordered an MRI of his back, (and the orthopedist who did this said to us "there's nothing we can do, just control the pain).

yeah, right!! My husband was on pain patches, (Called duragesic fentanyl pain patch). he was up to 150 of the patch.

Guess what, today he goes to the gym every other day and hasn't worn a patch in 3 years.

Yes, he still has PN but because of the adjustments (and my massages every night), he's a new man.

You're on a good forum here. You will get lots of good information!!!!
Wish you well.

Melody

Specialist
 

If it were me, I'd find a neurologist specializing in neuropathy. And if you can't find a specialist in your area, at least get him to a neuro. I don't know of any medicine that will "cure" neuropathy. You have to address the cause of it and stop whatever is causing it. Some of us have neuropathy caused from diabetes, autoimmune problems, nerve injuries, spinal injuries or disease, etc. There are numerous causes of neuropathy and I have been waiting to post this spot. It will help anyone who doesn't understand the disease. There are multiple links within the site too.

http://www.nlm.nih.gov/medlineplus/e...cle/000593.htm

Billye

I agree with all responses. More questions for you:
 

Hi LisaM!

I agree with everything the others have said, here, in response to your message, and I agree with all their good advice!

Some additional questions for you, are:

1) What is this man's Vitamin B-12 blood levels? Rose is an expert about Vitamin B-12 deficiencies (causes, symptoms, testing, best types of B-12 supplements, etc.), and Rose (and others) can explain how a Vit. B-12 deficiency can cause peripheral neuropathy (PN).

2) Does he have any problems with digestion &/or small intestinal absorption of nutrients that normally keep nerves healthy?

a) Might he have a GLUTEN sensitivity? Cara first told us (on original BrainTalk) about Dr. Fine (gastro MD) and his EnteroLab, with website at http://www.finerhealth.com EnteroLab (in Dallas, TX) does non-invasive stool sample tesing, looking for possible "sensitivities" to certain food proteins, such as gluten (in wheat, rye, barley), casein (a milk protein), etc.

See the forum here (and at OBT/Original BrainTalk), called Gluten Sensitivity/Celiac Disease, (Cara started that forum, over at OBT).

There may be similar bad effects from casein, if one is sensitive to that milk protein.

3) Cara also told us that a GLUTEN sensitivity can cause neurological problems, even if there are no digestive (mal-absorption) problems.

4) Many MEDICATIONS have bad side effects that can cause peripheral neuropathy. Read paper package insert, etc. WHAT ARE ALL MEDS HE HAS BEEN TAKING, FOR HOW LONG, AND FOR WHAT CONDITIONS?:

a) One example (there are plenty of other examples): ACID BLOCKERS! These prevent the stomach from making "intrinsic factor molecules", and without these intrinsic factor molecules, dietary Vitamin B-12 doesn't get properly absorbed in the ileum of the small intestine. Rose taught us this. Does this man have GASTRIC REFLUX? If yes, is he taking ACID BLOCKERS? (like Nexium, Prilosec, etc.)

I have some gastric reflux tips on webpage 10 of my website (non-drug). Webpage 5 of my website tells about some causes of reflux.

5) Has he had any vaccinations, such as a flu shot, military required vaccinations, etc.?

6) Has he been exposed to any harmful (toxic/poisonous) chemicals? (chemicals used at his workplace, outgassing from new building materials, outgassing from new carpets, pesticides which include at least insecticides, herbicides, fungicides, MOLD from water leaks &/or flooding, etc.)

7) Follow up on all the advice the others just gave you (and I'm sure more people will have more advice, soon!)

Carol
http://cantbreathesuspectvcd.com

Dear Lisa M
I have inherited peripheral neuropathy affecting motor and sensory system.
I got it from my mother at conception and gave it to both kids, who gave it to at least some of our 6 grandkids.There is no cure. It is progressing steadily, so I am better this year than next.

What to do? Live life when we can, and do what we can while we can.Enjoy what is enjoyable. Show people love. Keep off harmful ingredients like alcohol ,tobacco and "health" products with unknown ingredients. Future is unknown to all whatsoever,solve problems as they come.

Guess most people with cronic disorder running in their family will formulate a philosofy of life to help them through.

I am a christian, have been lutheran minister for 35 years and find a big help
in that.

wishing you and family all of the best

Per, Norway

Carol...answers - as much as I can give, anyway....
 

Thank you for your thorough response, Carol. This is exactly what I was looking for. I don't know much, as he's the patriarch of the family, and as such he tries to remain strong, and would rather die than let all of us know how much pain he's REALLY in, or how much he is REALLY deteriorating. Like I said, when we ask how he's doing, he always puts on a happy face, smiles and says, "Oh, GOOD, Good!" but we can "see" he's lying. For example, he came by the other day, got out of the van, and we saw him wobble when he stood up, and he stood there for a moment, waiting for his feet and legs to steady before he began to walk. And mom told us he mentioned that he won't be able to drive their motor home soon (the drive from here - Michigan - to Florida for an extended vacation every year in the motor home, and this is the joy of their life) because he cannot drive for an extended period of time. He can't "feel" the pedals after a while, and can't feel the brake, or how much pressure he's putting on it. So we KNOW he's getting worse...but he won't tell us this. So i will TRY to answer what I know - although it's not much. And what I don't know, I will forward to him in email so he can speak to his doctors. At least I know MOM (his wife) will make the doctors look at him for these things. So, here goes...

B12, GLUTEN, ACID BLOCKERS...I have no idea. Flu shots, they get every year. Chemicals, I don't know...but one of his son's owns a fertilizing business and does fertilize his home and businesses every year so he would be exposed to that, but not much. Also, I'm sure every now and again he'd be exposed to new carpet, but again, not much as it's not his "business" just would be when it's replaced at home or in one of his offices (he owns a few tax franchises, but retired a few years ago). I will find out what medications he's taken over the years, at least up until he was dx'd with the neuropathy and report back later (if he'll tell me...like I said, he doesn't like to "admit" he's as bad off as he is). Thank you SO MUCH for the response. I KNOW this is a great source of info. I post on two other forums at BT, and was at OBT for a few years on two different forums for myself, and there are awesome people there - so I just KNEW there would be awesme ppl here, too :D

Hugs
LisaM

Billye, that link was AWESOME
 

it had some GREAT information in it. I have copied and pasted most of it into an email for them, and sent it off to them. Mom just had back surgery on Monday and went home yesterday so this will give her something to read. Hopefully they will take note, and have allllll those tests run. Truthfully, I don't think they've looked for any "underlying cause" yet. I don't like the doctor they've seen. The neuropathy is similar, I believe, to my RSD, and from what I've seen, I dont' think they are dosing him right with the medications. I see a pain doctor, and he's taken some of the same medications I have, but at a LOT lower dosage. My pain doc has commented that I needed a certain dose for pain control, then when I ask dad what dose he's on, it's REALLY low...a lot lower than my doc has said is needed for pain control...so I dont' think the doc he's seeing is dosing him correctly.

I'm going to have a stern talking to him on Sunday. We'll be seeing him for a Baptism then.

Thank you all SO MUCH!

Hugs
LisaM

LisaM

The first thing someone should do (if you have access to a diabetic testing meter), is get this guy's blood sugar. That will either say "get him to a doctor immediately" or if it's lower than 110, at least you'll know he's not a diabetic.

There are all kinds of blood glucose levels that can affect people.

I'm a diabetic and I'm under control but I've been diabetic for a long time and when I found out at age 40, I had probably been a diabetic long long before that so the damage had creeped up on me.

The guy across the street from me is a diabetic. Found out at age 72 that he had type 2. He controls it with diet alone (never has been on any meds) and his blood sugar never goes above 130. We go out of our homes every morning and I shout across the street "112" and he goes "87".
Every day it's a new number but with him, he's under control
Guess what he was diagnosed with last year??? Neuropathy in his hands.
It's so bad that he underwent light therapy all the way in California. Seems there's this doctor (the only guy in the US, or so he says) that has this light therapy machine. So Nick goes there twice a year and has the light therapy.
At first it helped a great deal but as of late, it's not doing anything. Nick said "forget about buying those $50 light machines, this guy's machine costs hundreds of thousands of dollars" Very interesting these new gadgets!!!

When I read all your reponses, I didn't read a thing about diabetes so I gather he has not been tested. If I'm wrong, I stand corrected!!!!

He really should be tested soon!!!

Melody

Melody, Hmmmm - I hate to assume anything cuz we all know what "assuming" does). But you'd think that since diabetes is a leading cause of neuropathy, that would be the FIRST thing the docs would check, right? I'm HOPING his doctor was smart enough, anyway. He wasn't just dx'd YESTERDAY, this has been going on for a while now, so hopefully his docs were diligent enough in testing him at least for something as apparent as that would be.

But...I'm not going to just assume...I'm definately going to ask him.

Thank you for reminding me that assuming should never be done.

Hugs
LisaM

pleading ignorance
 

I don't know what an SO is? One of the ways you can help us help you is to present a coherent picture of exactly who this person is. Okay, I know it's a male. And he's a patriarch, so I'm guessing he's over 35. But beyond that, I'm clueless as to a sense of his medical history. Can you fill us in on more details of who he is--history of diabetes, family history of diabetes, obese, other problems---arthritis, heart, balance, deafness; family history, drug/alcohol/toxic exposures?

Everyone who has posted to you already has done a fabulous job of outlining the various issues involved in diagnosis. Somewhere there will be a cause, most likely.

I've posted a list of all the tests which can be done, and most should be done, to make a diagnosis of neuropathy. They're posted at www.lizajane.org.

You'll find there links to spreadsheets. Each spreadsheet lists a group of tests. Some of tests for hereditory pn, some for immune pn, some for toxic. The ones for sensory pn are separated from the ones for motor. Plus, there's a list for sensory and motor neuropathies that can be used somewhat like a to do list. I'd suggest poking around there and then downloading the charts which apply. They can be brought to neurologists to help feel you've gotten completeness. Also, I very much recommend asking for copies of the results of all tests when leaving each doctor's appointment.

The spreadsheets are useful for anyone, btw. They help people keep track of yearly tests, or tests specific to their medical problems, in a way that makes trends easily visible.

Good luck helping your SO.

I think--
 

"SO" stands for significant other.

One more point I should mention about all this: if diabetes or impaired glucose tolerance is being contemplated as a possible cause, a three to five hour glucose tolerance test with concurrent insulin levels should be considered, as merely taking a blood glucose level, or even a HemoglobinA1c, does not catch all "pre-diabetic" glucose intolerant people--or even all diabetics, unless their blood sugars are grossly deviant at all times (not something that all people with these issues experience; some only show abnormal responses to glucose challenge). It is the pattern of responses to glucose challenge over time that is often more indicative of whether a person has a degree of glucose dysregulation--and this is important, as there is increasing evidence that neuropathy can set in well before frank diabetes could be diagnosed under present guidelines (and this is not something even most endocrinologists are taught in med school; most are taught neuropathy is a long-term complication that shows up well into the condition).

See:

http://intl.neurology.org/cgi/content/abstract/60/1/108

http://www3.interscience.wiley.com/c...TRY=1&SRETRY=0

http://www.ncbi.nlm.nih.gov/entrez/q..._uids=16448668

http://www3.interscience.wiley.com/c...07929/ABSTRACT

http://www.ncbi.nlm.nih.gov/entrez/q...d_AbstractPlus

There are a lot more, but you get the idea.

My father was diagnosed with diabetes at age 79
 

I just wanted to add that diabetes can hit anybody at any age. Sometimes if you are on a certain medicine it's possible to get diabetes from that.

12 years ago, while visiting my father in a nursing/rehabilitation facility in Florida, (he was 79).my father kept giving me dollar bills and telling me to go to the coke machine. He kept saying, "I'm always thirsty, I can't get enough coke". I said "how many cokes have you had today, and he must have said 7 or so".

Since I'm diabetic (I have never been thirsty, so go figure), but I knew about my condition, as soon as I got him the coke, he slugged it down and said "man, I'm still thirsty".

I immediately went to the nurse and said "please test my dad's blood sugar, I believe he has diabetes". Since he was there for congestive heart failure, she looked at me and I could see her brain thinking "Oh we have another nut on our hands who thinks she knows everything". She just did it to keep me quiet. His sugar reading was 800. She immediately gave him a shot of insulin.

He had to take 2 shots a day after that. He lived one more year and was quite comfortable. He had been given hospice care at the beginning of being sent to this place. They gave him 9 months to live. Because of his care, he lived 18 more months . I would call him every day (visiting him as often as I could) and on December 23, 1995, I called him at 6 p.m. and he was all excited because my aunts had just dropped off a peach pie. He was very excited and very happy. After a short I love you, he hung up, rode his scooter into his room, got off, sat down in a chair and passed away.

They knew he was dead but he had a pulse. They all went nuts and called the paramedics saying "something is going on, this man has passed away but he still has a pulse". The paramedics did their thing and then said "oh, this man has a pacemaker, that's why he still has a pulse".

My father got one over on them until the end didn't he?? He was the nicest man I ever knew.

So diabetes hits even when you dont' expect it to.

make sure he doesn't have it then you can go on from there.

Melody

Thank you everyone...once again
 

SO means "significant other" and the man who has PN is my "significant other's" father. So, he's basically my father-in-law (or, FIL). I know he's been thru a ZILLION tests for a ZILLION different diseases. I'd "assume" that diabetes was the very first thing they tested him for. I know he's had a bunch of mri's and emg's and doppler's as well...but I'm not sure of the results. I'll have to get more info. We did not see them this weekend. His wife (my MIL) had to be taken back to the hospital this weekend for complications from her back surgery - everything is fine, but he was so exhausted from taking care of her that we didn't want to bother them so we stayed home. I will ask further questions this week.

Thank you all.

Do we have a list of these abbreviations somewhere? Maybe they are intuitive to most folk, but I can't believe how I struggled through that one!

Hope your MIL and FIL are stable this week.

Abbreviations in posting
 

This is a real problem for a lot of us. The meds cause shortcuts in brain for me and I have a real problem searching out the meanings of the abbreviations. i.e. MIL, FIL, SO, etc.,etc. I actually skip over some posts because they are so time consuming trying to figure out what in the heck people are talking about.

Billye

Here are a couple of links, some of the abbreviations are specific to the type of forum (e.g., TTC = trying to conceive):

http://www.anapsid.org/internet/smileys.html#abbrev

http://sheknows.com/about/look/90.htm

It took me the longest time to figure out what "YMMV" meant (your mileage may vary = my experience may be different from yours).

Hope these links are helpful to you. :)

Many thanks
 

Thanks so much Dottye,
Billye

You're very welcome, it can make you dizzy, eh? ;)

My oh my, you know that technology has reached a new phase of development when you are reading a post and you find out that TTC means trying to conceive and YMMV means your mileage may vary!!

Never in all my life, would I have thought that in a posting, someone would write ttc and ymmv.

What else do we have to learn????


WADOFWHTLA...........WE ARE DUMB OLD FARTS WHO HAVE TO LEARN ABBREVIATIONS!!!!

HAH!!!!

WML--- (With much love) Melody

The point is COMMUNICATION!
 

Who cares what the FRUITCAKE or FART initials we all use...equals the diversity of YOU ALL vs. YOU GUYS. No big diff. Serious question tho: does "mileage vary" according to age or virtual wear and tear or are the combinations/permuations of the above? Are there STANDARDS? As in judging olympic atheletes or Westminster Dogs? Or other creatures/atheletes? Ultimately-DO WE FREAKING CARE? Think NOT?

I have searched endlessly for PAIN standards or Numbness standards that may be the keys' by which doc's guage us...MOST are ...well, vague! Your mechanic will probably give you a better appraisal of 'that sound' and a hefty estimate than the info you get from a series of tests. Yep, I am becoming cynical; No, not there yet; Am I lucky? yep; Could I be otherwise...you BET ya!

I just every day, every way, hope each of you get as lucky as I have been!

Hugs and fuzzies! - j

Made you laugh! ;)


Sometimes the abbreviations are not obvious, I just sit and stare for a while ... and then do a google search.