Hi folks,
I had just written a response and I pushed the enter button twice and it disappeared!!
Here I go again!
Thanks for the information on the netti pot and it susceptability for bacteria growth...I was almost going to go that route but I opted for the little saline solution bottles that I can carry in my purse, etc!

This is one of the most stubborn colds and lingering coughs that I have ever had and I'm wondering if the RSD has made its presence in this common malady by compromising my immune system...

I am using only one of the inhalers and breathing in a lot of steam with vicks and using mucinex..I hope these interventions help..I'm going on day 12 with this..
Daylily, I'm truly glad you are feeling better and didn't use the steroid pack after all..

I know we are both grateful for Mrs. D's insight and help!!!
Good health for all of us!!
hugs from Hope4thebest xoxoxoxox

The organism that has been found in the sinuses of netti pot users is present in distilled water. Please read the comments on that link I gave.

Basically, there are also fungus organisms possible in tapwater, or distilled. Distilled is not sterile.

You know, this is a sort of gruesome thing-- that it is even possible by swimming in stagnant water, to DIE. There is an amoeba that lives in warm swimming water that when it gets up your nose, enters the brain and kills you! This has been happening to healthy kids in Texas and Florida. Dr. G...the Medical Examiner show, had this recently where a young healthy boy died of this amoeba from swimming in one of the lakes near Orlando Florida.

Our nasal passages are designed to remove stuff, not have liquids go back the other way. All the nasal sprays you can buy in a pharmacy are sterile and produced in sterile environments during manufacturing. Compounding pharmacies who make special nasal products do so using aseptic technique and sterile solutions.
definition of aseptic technique:
http://en.wikipedia.org/wiki/Aseptic_technique

A friend of mine had sinus surgery, and afterwards she was supposed to use a saline spray with something added to it, and her doctor gave her sterile product to mix it up.

I think that when people already have a sinus issue, and the tissues up there are inflamed, you need to be extra careful about the quality of the water that goes up there.

The organism that is being found in sinuses, is the same one that contaminates operations, esp cosmetic surgeries, where improper cleanliness is present.
http://www.cdc.gov/mmwr/preview/mmwrhtml/mm5323a4.htm

This article explains this bacteria in more detail, and how it can contaminate hospitals etc:
http://docs.google.com/viewer?a=v&q=...-56XaZF7N6GvMA

I amy be able to start warm water therapy again in a therapy pool, but I read somewhere that this can be hazardous for mega infection. We do not put our heads in the water, but I am concerned about other entry points or perhaps even a tiny lesion on the skin...I hope there is no major fact or truth to this!!
Hope4thebest

MrsD -- I know you are knowledgeable in PN. Can you tell me how it feels when it starts? You know I had that reaction to Avelox. I am still experiencing back pain, and more pain over all. But, it has been better than it was at first. Hope I never have to go there again! YIKES...

Anyway, I have been having a problem the last few days. When I sit more than a few minutes, my feet feel tingly like they are asleep, not truly numb, but very tingly. If I sit more than a few minutes - say half an hour, it is very difficult to walk because I can't seem to tell where my feet are in relation to space, if that makes sense. This feeling seems to stop near my ankle, so involves just the feet.

Problem two is that because of the RSD in my left side of my upper body, and in my back, I always sleep on my right side. I also have a TV in my room, which I watch laying in bed, on my right side. In the last few days, my right hand gets VERY tingly, and a bit numb after laying for perhaps 15 minutes. If I try to lay on my left side, my left hand goes tingly. Just standing or driving (today had to go to appt. an hour each way) my hands don't feel quite "normal"

Does this make sense? I don't want to dwell on the negative, but the Avelox can cause PN, correct? If it does, there is nothing to stop it or correct it is there? I have a doc appt. on the 19th and don't want to move it up if I don't have to.

Since this comes and goes, mostly dependent on how tired I am and what position I am in, I don't know if I should be concerned.

The only other thing I have done different is on April 28th I took my first 10mg Methodone, then on the 29th I took one half tablet, on May 1st took another half. That is all of the methodone I have taken. I cannot say that the tingly feelings started after the methodone - seems to me it has been happening a few days before that. Seems to me it has been happening at least a week, but I cannot swear to it.

Thanks, MrsD!
Jules

Starting with PN can be vague. Mine started in my feet, and at first it was PAIN.... mostly in the morning, when trying to walk.

Then it progressed to numbness over years. I also had carpal tunnel. When I had my thyroid fixed, my feet woke up to pins and needles, then tingling then just numbness left in the tips of 2 toes. My carpal tunnel only acts up when I overdo the wrist motions like when gardening.

Compression neuropathies, where a ligament compresses a nerve going thru, are mostly numbness and pain when the hand or foot wakes up.

But every PN is different. Some of our PNers have shooting pains, some have severe pain (those with vasculitis etc).
When you lose your sense of balance...those nerves are typically proprioceptive and in the joints, telling you how much you flex, and move etc. They are somewhat different from the sensory ones.

When you go to the doctor you can request tests for Ig fractions to see if you have antibodies etc. There is a kind of one to test for called Anti-Mag antibodies. Glenn over at PN is better with all the testing than I am. But some PNers have antibodies that can be measured, and if your insurance covers it, then I'd have that done. The autoimmune issues and Anti-Mag types typically don't change much during the day. They are more constant.

I can get numbness returning when my blood sugar dips in the night. Or when I have too much salt, or foods with MSG.
The reactions to fluoroquinolones may have pain mostly as a symptom. But numbness/tingling/pins and needles may be the most common and change in quality during the day etc.

Now my PN is mostly burning in quality, at night. And I found that nightshade veggies (potatoes and some tomato sauces) aggravate this for me. If I avoid them, I rarely have severe burning. Hot weather can give me burning too. Many of us at PN do not like heat, and often we don't wear socks anymore, and choose shoes carefully.

Hand symptoms can be at the wrist (like carpal tunnel) or from the neck. I can get compression from the neck sometimes myself. My arthritis is spreading to that area now that I am older.

Our TOS forum also has descriptions of compression of nerves under the collarbone... causing hand/arm problems.
I think you should look at that forum too. Your issues may be mixed with some nerve problems, combined with compression.
(this is called double crush where the affected nerves are being stressed at two points).

http://neurotalk.psychcentral.com/forum24.html
In the stickies there are diagrams so you can see nerves for the arm more clearly.
Jo is a good resource, and PMing her would be helpful to you, too. Jo*mar

In any event it is important to clearly describe your symptoms so the doctor can order tests. If they come on at certain times and go away when you change position, that is important too, and suggests compression issues.

thank you so much!

I really do appreciate the time you have taken to explain things to me. It really means a lot.

I hope it goes away before then. That round I had with the Avelox really threw me for a loop, and I am hoping it goes away without leaving me with lasting issues.

I will try to get a better picture of what is going on before I go to the doc. I'll keep notes and see if there is more of a pattern.

Thanks again
Jules

Hi Jules and Mrs. D.
When I had gone back to the doc for this terrible cold/awful thing/virus from Planet Mars that I had, he recommended Avelox !!
Am I glad I had read the posts all along and knew the score with the effect of this antiobiotic. I was so grateful that I was able to retort with the fact that it could cause problems!!
So I took the third option which was azithromyacin (sp).
I am just starting to feel better and get a handle on the cough which was so bad it warranted a chest x-ray and breathing treatments! Three weeks later, I still have remnants of soreness in my throat..
This, indeed, was a bug from outerspace!!!
Thanks for all your help and guidance !
Hugs from Hope4thebest xox

Good for YOU, Hope!

Zithromax works very well on bronchits and other upper respiratory infections. Sometimes a slightly different dose is needed... 500mg daily for 3 days, instead of 250mg daily for 5.
(the first loading dose using 250, is not doubled in the shorter course).

It does not have the neurological damage potential that the fluoroquinolones have.

bumped up to say that I have been having a lot of problems with my hands and feet in the weeks following taking avelox. Started out with mild tingling. Now, it's major tingling, numbness, feeling of my hands and feet being really swollen, pressure sensation, pain, like having your hand fall asleep but much worse. It is worse when I lay down. I am loosing strength in my hands and feet.

I went to a Neurologist today. Not the one I have been seeing, but the one who first thought I had RSD 9 years ago. My family doc wanted a fresh opinion on me. So I have confidence in him, since he was the first to find the RSD all those years ago.

He said I had neuropathy. I didn't ask if he meant peripheral neuropathy. (smacks hand to forehead) He did say he could have order an EMG but no use to... would just cause me a lot of pain, and it was not needed to diagnose. Said he would like to have an MRI of my neck, to rule out something going on there, but again, he said it would not change what it is, or help fix it, so was not going to do it.

He sat in the room, with his laptop, and tried to find a connection between the avelox and neuropathy. He even called someone to check - not sure who - but said he could not find anything. He also said it was logical that because of my RSD being severe and over so much of my body, the big flare I had from the Avelox, pain may have triggered the neuropathy.

I believe he said I had "idopathic neuropathy"... I was so uncomfortable that I could not pay much attention.

He said he didn't see the need for blood work to rule out vitamin B deficiency or diabetes because I had my last 3 years worth of tests with me, and they have all been consistent, and since my neuropathy came on suddenly, it would not be caused by those things.

He gave me samples of Savella to try. Suggested Lyrica but I can't take it. Said for me to see the doc at Cleveland Clinic, ask her if she knows if RSD people get neuropathy very often. He admitted his experience with RSD is limited. To come back to see him after I see her, and if I am not any better, we will figure out something. Perhaps go back on Topamax.

He also said the does of methadone I am on is small, and if the Clev.Clinic doc offers to increase it, that it may help the neuropathy.

Pretty much, he said it will either get better, stay the same, or get worse, no matter what treatment or tests, and I will just have to wait and see what happens.

He did tell me to increase the amount of hand exercises I am doing.

Hi Daylilyfan,
Weeks have passed since we were posting about the Avelox and I'm sorry to hear you are still have symptoms that seem to be worsening.
What concerns me about your doctor, is that he is unwilling to do an MRI and do more lab tests to test your Vitamin B levels and other results that would be current and completely up to date. An MRI could rule out nerve impingment and other issues. It would be to your advantage if he were a little bit more pro-active to find out the cause(s).
Ofcourse, it will "get better, stay the same, or get worse.." there are no other possible scenarios!!
There are special biopsies that can be done to help in diagnosing PN.
It's so hard to distinguish PN from RSD symptoms..
Maybe some of the supplements Mrs D suggests can be of help..
I hope these new symptoms begin to recede
Hugs from Hope4thebest