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Scott R

Posted by Carmen H on 5/17/03 at 20:21 (119145)

You should consider making Periphereal Neuropathy a section of this board. There are many symptoms in people's feet that ARE indeed PN.

Re: Scott R

SteveG on 5/17/03 at 20:26 (119147)

Carmen - did that ultimately turn out to your diagnosis.

Re: Scott R

Carmen H on 5/17/03 at 20:31 (119148)

I believe it is headed that way after TWO years of going to dr.s., several months with hardly any pain at all (felt like I was a normal person for a long time) and BOOM (literally a major surprise) these things start happening and don't stop as of a few weeks ago.
Many stories I have been reading by others with PN say 'All these doctors said I have simple PF! ' or ' I have had PF and TTS surgery and it could have been avoided and probably made things worse'
Just alll kinds of things that make me recall MANY things I went through in the beginning stages of the symptoms I had two years ago.
SO..with that said..I am not content to sit and watch one more doctor dismiss me as having 'inflammation in the fascia' as an excuse for burning, tingling, stabbing pain.
Does that help?
:)

Re: Scott R

SteveG on 5/17/03 at 21:53 (119157)

Yes - I recall you used to post quite a bit a couple of years ago, and I am sorry to hear that your symptoms have returned. While you wait for a clearer diagnosis, you might try neurotonin or doxepin for the burning, etc. Have you had a metabolic workup - diabetes, pernicious anemia, etc?

Re: Scott R

Carmen H on 5/18/03 at 09:00 (119168)

Tried it tried it and tried it.
:)
I have had it all done...even the entire panel for autouimmune disease.
I have researched my symptoms and possible disases and causes to the death...the only thing left is idiopathic PN.
Unless this doc pulls s miracle out of his pocket and thinks of something the top doctors in Atlanta didn't think of...I am stuck with it.
THANK you for writing....and for your concern.
:)
Life goes on no matter what our ailments.

Re: Scott R

Pam S. on 5/18/03 at 19:51 (119212)

Carmen:
I am sort of new but I am just curious, did you have the needle EMGs and all that. I bet you did. I totally understand your frustration with seeing all these docs. I was diagnosed with fibro. and I had every test and MRI in the book. I had a physical recently and when I asked about the PN by internist said no one really understands this and everything has been ruled out for me. SOOOOO what to do.

I am in the same boat. Only my EMG showed tarsal tunnel but that foot I had the surgery in burns 4 years later thou not as bad. I am sure I have the PN and Neurontin does help. I am currently trying a cream with Neurontin in it. We shall see. I am not too hopeful at this point.

I think I recall your saying one time that you need to keep busy and not focus on your burning pain. That is what I try to do too. My husband thinks I get nothing done.

Well, if anyone on these posts has any ideas we would welcome them. I have not gone to a Neurologist. What is he or she going to say. My husband said 'Go to Mayo' but I am doubtful they would help either. What do you think.

I know you do not really want to get into all this again. I did speak to my massage therapist about the trigger point therapy. We are going to begin on Thursday. She said trigger points and tight calf muscles can make your feet burn. Have you tried compression hose?

Re: Scott R

Carmen H on 5/19/03 at 08:22 (119248)

I haven't tried compression hose....and don't plan to unless I HAVE to..I am claustrophobic in the clothes sense. My mother in law gets irritated with me when we shop as she brings me cute clothes in a size 6 to try on so she can buy it for me and I will pull a 10 off the rack.
She says the 10's don't flatter me...but the truth is...if something fits me I am not comfortable.
Weird I know...I like BIG clothes to hang off me. That's how I am most comfy.
So compression hose? YIKES...I get edgy just thinking of them.
A little longer explanation than you would have liked I am sure.
:)
If you can afford to go to Mayo I say GO. I know I would. If I go on my trip to Minnesota (where I am from) this year I will try and make an appt.
But for now I goto a new Neur., read and learn how to deal with this.
Yes...I had the NCV twice and the EMG AND the MRI of the brain (checking for MS) and the MRI's of the lumbar spine, pelvis and feet, and the somatosensory test (MS)....had it all.
ALL negative. I am as healthy as can be according to the tests.
So I am assuming PN...there are no other answers.
I really think you will get some relief from the TP treatments n your calves....RELAX while it's happening as tightening your muslces can make the release less effective...let me know how it goes.

Re: To Carmen

Pam S. on 5/19/03 at 09:21 (119263)

Dear Carmen:
You are so funny. I do not blame you about the hose. They are really ugly but I am getting SOME relief so I wear them around the house. I always bought my clothes too bit for me because my mother always told me to. Probably because I would GROW into them and they would last longer HA

I am just so out of gas seeing docs. I really do not think they know what to do with us. My internist is fabulous. He was even written up in Town and Country as one of the country's best internist. He is not a neur. but he is very smart. I have one friend with MS symptoms see a neur. and he was really rude to her.

The physiatrist sp? I was for my nerve conduction test told me fibro. was a 'rich, white women's disease'. I was devasted by that comment. Oh well.

Maybe I should go to mayo but I function pretty well. Guess I have forgotten what it feels like NOT to have nerve pain. I have overcome alot of other pain so I am happy with most of my body pain now.

Thinking of you. Lets stick together and share infor. as we learn. I really appreciate all of your support. Pam

Re: Scott R

brianh on 5/19/03 at 09:28 (119265)

Carmen,
There is one other possible cause for your problem that you can do something about. Do you have any silver/mercury amalgam tooth fillings? If so, they are responsible for many auto-immune and nerve related problems. If you have these types of fillings (even one is too many), I would strongly suggest that you have them replaced by a dentist who specializes in this process. This has to be done very carefully so that you don't swallow any of the filling material or breathe in the vapors released during the drilling. Also, taking n-acytl-cysteine (NAC) will help remove existing heavy metals like mercury from your system. The following web-site has the story of one such patient with mercury relate PN in the lower extremities. http://www.geocities.com/ResearchTriangle/2888/mpoisoning.html

Re: Scott R

Carmen H on 5/19/03 at 09:38 (119267)

I read about someone who had this...had all the mercury removed and after thousdands of dollars ( insurance wouldn't cover it) he still had major trouble.
Do you know more about this than the story above?

Re: Scott R

brianh on 5/19/03 at 10:19 (119275)

The silver/mercury amalgams are just the source of the mercury poisoning. You also have to go through a process called 'chelation therapy' to remove the existing mercury that has been built up in your system during the years that you've had these types of fillings. The n-acytl-cysteine (NAC) is a chelation agent that will gradually remove the existing mercury (and other heavy metals) from your system. It isn't enough to just get rid of the source of the mercury if you don't address the existing mercury buildup in your body. A friend of mine had suffered for years with bi-polar disease. Within a year of having his mercury fillings replaced, he was able to stop taking lithium because he no longer had the bi-polar symtoms. His case had nothing to with foot pain, but does indicate (at least to me and him) that there is a link between mercury and neural problems.

I guess if you want to see if your problem might be mercury related, you can just try chelation therapy. Perhaps this will remove existing mercury in you system faster than it enters your system from your fillings. If your symptoms decrease, you'll have your answer.

Re: Scott R

Carmen H on 5/19/03 at 12:19 (119286)

I read about that too...expensive as well. Is there ANYthing that's not?
;)
Thank you for your input and advice.
I am glad your friend is better....

Re: Scott R

Richard, C.Ped on 5/19/03 at 14:35 (119293)

That is a good idea Carmen. I have quite a few people come in that describe PN symptoms, but have never heard of it. I have had quite a few customers discover that they had PN because I told them to ask their doc about it.
Richard

Re: Scott R

brianh on 5/19/03 at 15:33 (119298)

http://www.swansonvitamins.com has 100 - 600mg caps of n-acetyl-cysteine for $7.49. That's not too bad a price. If you take 3 per day, it will last a month. Usually, the only way to get insurance to pay for chelation therapy EDTA injections is to have your doctor claim that you have lead poisoning. You can accomplish the same thing yourself by taking the n-acetyl-cysteine.

Re: To Pam S

Kathy G on 5/19/03 at 16:09 (119303)

I am seeing a rheumatologist to rule out Rheumatoid Arthritis this Friday. I truly don't think I have it. Every doctor I have seen says that if I don't have RA, I have Fibromyalgia. I must admit, I have a real problem with the diagnosis. If I have it, I've had it since I was about eighteen and I'm not going to give it any labels. Unfortunately, the people whom I've encountered who say they have it have all been neurotic hypochondriacs and that certainly doesn't advance the case for it being taken seriously. I probably do have it but I'm actually ashamed to admit it as I don't want to be put into that category.

Although it has been finally recognized as a viable, medical condition, many doctors still do not treat it as such. I take the 20 mg. of amitriptyline that the doctor prescribed for it but that's about it.

In about twenty years or so, after more research is done on it, it will probably be taken more seriously and they may even have more treatments for it available. When I asked one of the the orthopaedic surgeons I saw for my hand if he really thought it existed, he said, 'Well, we have to have some explanation for people like you. Your symptoms and pain are real and yet all the tests for known maladies come out negative, so you must have Fibro.' Not exactly a ringing endorsement!

In the meantime, we'll have to learn to live with it and give donations to the American Arthritis Foundations in hopes that their research will turn something more up on it!

Re: Scott R

carmenh on 5/19/03 at 18:39 (119319)

AHHHH! I see!
I will ask the neur about this and see the direction this heads. So I can take that stuff and it is the same as the Chelation therapy?
Hmmm something to think about.

Re: Richard

carmenh on 5/19/03 at 18:41 (119320)

I am reading more and more about this 'silent disease' and how many people get treated for the wrong thing...(TTS, Neuromas, PF) etc...and all along it's PN.
No wonder some people have failed surgeries...they were probably treated for the wrong thing.
Adding PN to this board would change things dramatically and probably urge more people to get checked for PN instead of getting cut open.
I am glad you direct people in the right direction.
Good job!
:) Way to care.

Re: To Kathy G

Pam S. on 5/19/03 at 23:24 (119343)

Kathy:
I am just reading this. I cannot believe we have the same problems. I swear fibromites all have feet issues. I belong to a fibro support group and I am very up on the subject. There is a great newsletter you can subscribe to. It is too late and probably not the right board to go into this. I do alot of work with diet which has really helped me. I do believe this exists and NIH has received extra funding for research this past year. Newsweek has an article this month about fibro. Did you see it?

I could go on and on. More later. Your pal, Pam

Re: Scott R

brianh on 5/20/03 at 07:01 (119348)

And there are other oral chelation agents besides the n-acetyl-cysteine. This web site talk about using cilantro with chlorella. http://www.kitchendoctor.com/articles/cilantro.html

Re: Scott R

Marty on 5/20/03 at 15:59 (119403)

I think this is a great Idea! If you go to the P/N sites and read some of the stories MANY have had pf/tts surgeries. There's got to be many causes to burning/tingling feet.

Re: Marty

Sharon W on 5/20/03 at 22:40 (119455)

How are you doing?

Sharon
:-/

Re: Scott R

carmen h on 5/22/03 at 08:21 (119604)

Thanks Brian...I am having a test for heavy metals starting Monday....24 hours of peeing in a jug.
Super.

Re: Been looking for you

JanaC on 5/25/03 at 22:16 (119920)

Hey Carmen,

We spoke on the phone a couple years ago and I lost track of your e-mail address. Would like to touch base with you and find out how things are going and catch up on what you've done medically. Drop me a line: (email removed)