[HeyJoe]

i have reread Mrs. D's posts. They appear to me to be questions and suggestions from someone who is trying to help you , as she helps so many people here, not doubt you. I think you are way out of line.

[mrsD]

Well, I use that as a pun from my other screen name which appears in
my signature.

What I am mostly doubtful of is the traditional medical community who
allows people to suffer as you have. Who ignores them during surgical procedures and fails to help them eat safely.

Just so you know, I was researching your post when you slipped in there before me. I had a hard time finding the paper, because the names threw me off. This forum terminates your posting time, if you take a long time in making the post. I lost my ID and had to resign in and almost lost what I had done before. Otherwise I would have posted before your last one.

One thing about the peripheral nervous system that even doctors do agree on is that peripheral nerves can and do heal. They take time, and also need a little boost from us.

I assume you came here to learn and see what others think.
That is what all of us are here for.

The unfortunate patients with hereditary or chronic demyelinating neuropathies, do not heal. Those are progressive, and
you have not indicated that yours is progressing and getting worse. So there is still hope for you to improve further.

[shiney sue]

Yes but Joe,we know Mrs d has helped so many here but Lucky is new
and may not. Even Sue learned a few new things on this and honest
I;m so worried about every rx a Dr. hands me I try to read the side effects
or call the Pharmacist..Most Drs. will write a script and have no idea
what goes with what your taking ,when a Dr. takes a min.to look it up
I'm thrilled..I have been taking water pills for years as long as I was taking
Potassium I was young and working,rasing 3 kids,but no I didn't have
high blood pressure I had fluide in my ears,I didn't get dizzy that's all
I cared about. But i'm allergic to Sulfur now this goes on a list to fuss with my family Dr.

Mrs d brought up Botox both my Uncle and oldest brother just had this
done. They both went to neuro's, my neuro was kind enough to explain
it me. When you mentioned pain behind the ears,is your mouth dry or
do you have to drink in order to swallow the food. I have Sjogren sy
my throat gets so dry,I have to ve carefull about dry throat,and I coughed
a lot and choked it wear's you out..A lot of water and sugar free candy
helped me and gaptopril seems to help. I was glad you wrote.

Look this is a compliment to Mrs d she's not a sweet taker like me,her mind
goes 100 miles a hr. she throws out what she feels may or may not help.
You lucky like so many of us have had to deal with PN and cancer ect.
But we all know 1 thing you have been tossed around by the medical
field. I worked with Dr.s for 25 yrs. most seem to want to outdo each
other. When you gave that report to the Dr. she just didn't want to
see it ,she or he was only into the fact they didn't do it. We have
pain ,buring tingling and on and on,I am of the people you can get PN
anywhere on our bodies,because I don't believe enough is know,neuro's
are odd,because Why would you pick a flield of I don;t know after
standard tests are taken.

You have a right to loose your temper,we all do,There are a lot of us
on disiabity. Come back if you want,I for one hope you do,we are a good support group,and I am sorry for one you got upset,you talked to
Kemb who has been on ensure and baby food for 6 yrs . I just did that
for six weeks. They talked me out of doing bodily harm ha.Your welcome
to pm anyone.. Hey Joe was doing what he always does cares..
Hugs to all oh boy my finger is hurting. Sue

[*Abigail]

Shiney Sue, thanks for the kind words. I hadn't lost my temper though....and I think that "doubtful" is probably not a good message for someone who is sharing their story for the first time........I'm sensitive about my condition and I don't talk about it often.......I even carried an empty inhaler around so that when and if I had a coughing seizure....I'd say to people......it's okay....I'm just having an asthma attack....would put the inhaler up to my mouth....and exit asap.......

Joe......appreciate your opinion too......but interpretation is in the eye of the reader......and I think you are out of line telling me my interpretation is offensive to MrsD.......leave that to her......

MrsD......I apologize......again......"doubtful".......sorry I misunderstood, and thank you for your advise....it is appreciated.......

[mrsD]

I went back and reread the original post: This last comment stood out for me:

I'm 60 now, and the garbapentin has helped with the cough, and pain somewhat.....but because I was never treated I now have permanet nerve damage. I was awarded my disability, and try everyday to be positive and not grieve over the last 19 years.....I tell myself that at least I've been around to see my son grow into a man.

The only treatments for acute onset PN (like with Guillain Barre Syndrome)
is plasmapharesis, and this is rarely offered to patients without its specific
paralytic progression.
If autoimmune markers are found in the blood and spinal fluid, IVIG may be tried.

But for all others, there is NO treatment for PN. There are drugs used for symptom relief, but they do nothing for the process. Gabapentin does not heal, it is symptomatic only.
So your doctors dropped the ball, and did not do further testing?
If you haven't had autoimmune markers done, it is never too late for that.

Some drugs actually cause PN. Antibiotics have a nasty track record in that regard. Nitrofurantoin (bladder infections), Cipro and Levaquin, and Metronidazole (Flagyl) are big culprits in this area. Some people react with nerve damage to others Sulfonamides (oral), streptomycin (injection only) and the aminoglycosides gentamycin and amikacin (injectable only). You were using antibiotics for that sinus infection, and if you continue, with those in this list, you face more risk PN wise.

A sudden full body attack may not be PN at all...it may be RSD. We have some posters here with experience in full body RSD.
http://neurotalk.psychcentral.com/forum21.html
I suggest you put a post up over there, and ask them.

The only known "treatments" for non-autoimmune PN are life style changes and supplements.
Life style includes control of prediabetes (insulin resistance), and evaluation for gluten intolerance. Some other foods can also cause allergy, but gluten from wheat and rye have the most research behind them.
And certain nutrients have been shown to help. You need to know your B12 level, to see if that is your problem. And I have listed other suggestions on this thread:
http://neurotalk.psychcentral.com/thread43355.html

Before we had things like gabapentin, the main treatment for PN was thiamine.
In fact it remains a TREATMENT, but doctors stopped using it, when the new highly advertised gabapentin came out. Some people have errors in metabolism --the aldehyde dehyrogenase pathway-- and taking thiamine helps them.(The antibiotic Flagyl does its damage thru this pathway) The new form benfotiamine has many positive papers backing it now. Gabapentin does not change anything at the tissue level. It only blocks nerve signals.

There is some new research on the fibro board, about glutamate. It is being found that high glutamate in certain brain areas increase pain perception in people prone to fibromyalgia. I think we will find glutamate is a big player for all chronic pain patients in the future. So you will want to avoid high glutamate containing foods --MSG, just as a caution. MSG is very neurostimulating and problematic anyway.

Another thing to look at is GERD. Chronic GERD can damage the larynx and associated structures.
Another is thyroid disease... when I had my goiter I had alot pressure on the laryngeal nerve, which caused hoarsness and
choking at night while sleeping. While that is better now since the goiter went down, I still have fatigue of the larynx to some
extent. So any enlargement of the thyroid or nodule or tumor of the parathyroids may affect this nerve.

[*Abigail]

Thank you.....tons of info to take in, but I will. Diet was never a concern of mine as I'm not diabetic. My last trip to the neurologist....2 months ago, after testing...... the loss of feeling in my feet had increased. This is all still new to me.....and I guess I need to learn the questions to ask......remember.....I only received my first treatment in Sept/Oct of '06. I'll go over all your notes......it will take me time......as I said, lots of info.......but I'll be better prepared next time I see the neurologist. In the interim I'll start eliminating bread, etc......see if that helps. I'm moving back to California..... the family thinks that I'll have better medical resources there, in addition to the fact that I'll have family around.....I'm alone here....my husband's work takes him away frequently. I love it here in NC, but it is very rural....and my kids are correct........ It's just a stressfull time right now........ The painter comes in today....and they have hired a handyman who reports today too.....get the house ready for sale......will be very happy when they are all done and then I only have to worry about real estate agents and their clients passing through

[Zini]

This post is to let lucky know there are others like her out there. I've had a chronic cough for 18 1/2 years now. And hoarse for, honestly I've lost track, 2-3 years (this time). I've been to doctors who have scoped me for GERD, CT scans of sinus, asthma, allergy testing, and more. I've aggressively searched for an answer only to be disappointed and pull back from the medical community. I've searched herbal/natural methods. I've had one Nurse Practioner who has been in my corner but really didn't know what more to do. This NP had another 'cougher' who presented with the same symptoms. While the cougher was on her quest she was directed to OSU Medical Center a Larangeal doctor who diagnosed her with Larangeal sensory neuropathy. She is on Lyrica and is 90% better. This caring NP called me the other day when she found out about the other cougher's relief. Long story short: I now am in the process of getting a referral to OSU Medical Center. I'm hoping and praying this is the right track for me and that the end and relief is in sight.

my other symptoms: I've had two thyroid surgeries and after each one I lost my voice for 2+ months. ON the second surgery it got a little better then was so bad that it sounded like a raspy whisper for more than a year. It is back but I will get hoarse if I've used my voice alot. I cannot sing or certain things come out with no sound.
I've had a sore throat for a couple of years now, specifically on the right side of throat.
I've been diagnosed with asthma but I wonder if this is a misdiagnoses. I've never been hospitalized with an asthma attack but my cough produces mucus.
And strangely enough when I was 18 I did have a bout with neuropathy that I never have connected with this...my left forearm was partially paralized for more than a year then feeling and motion started coming back. Until tonight reading this forum I never have even mentioned this to a doctor. I just thought it was some strange thing that happened!


Anyway that's all I can think of tonight. I can't believe I came across this forum tonight and read LUCKY's post. I believe you, Lucky. There are more people like you. This is a really tough thing to diagnose I guess. I am asking for your prayers out there. Please pray that my appointment will be a success and they will finally find a correct diagnosis and RELIEF for this cough.
Blessings to all

[cyclelops]

Welcome to the forum. I do so understand the anesthesia issue. I can not do generals. I just had a issue last week. I got an injection for bursitis and the doctor said no more, that he wants to remove the bursa in my hip and it requires a general. My rheum and neuro say 'no way'. So now what....live with this hideous pain? I say, give me the shot, who cares!

Rheum says it does no good to remove connective tissue....it will just recur elsewhere. It is systemic. But, the doctor doesn't get it that some people can not do anesthesia.

I also have a cough, but I have mild lung fibrosis, autoimmune issues. I am sure the neuropathy is an issue too.

Ugh, today it is a severe headache.

I do hope you feel better. I am glad you found out what the issue was. I have kids the same age as yours and lovely grandkids too. They are the light of my life.

Well, again, welcome.

[JoanB]

Hey cycleops, can you do that twilight sleep that they give you for a colonoscopy? I had that and a spinal block (I think that's what it was called) when I had my hip replacement. If they can do a painless hip replacement, which is pretty brutal surgery when you think about it, I would think you could do the surgery you're talking about. And waking up is much nicer than a general, too!