Thank you Mrs. D.

I have been reading, rereading and taking notes. Lot's of information here and no small amount from you. You are very generous with your knowledge.

Just placed an order for a supply of Methyl B12 in 5 mg dosage so as to increase my daily intake from 3 mg, Krill oil that I noted you take, Vitamin D3 2000 IU to stay safe without testing, R-Lipoic 100 mg / will start with 50 mg as suggested.

My magnesium is Oxide. Will have to address that. Should have checked the thread before I clicked the iherb place order icon. :(



I

Excuse me - had to take a call.

The " knots " are swollen lumps at the site of the metatarsal joints with the toes. Currently the worst are located at my 2nd and third toes of the left foot and the 5th toe of the right foot. The asociated toes are also swollen and sore. My podiatrist describes the condition as capsullitis and while the diagnosis inherently fits, it yet seems different. Very painful to walk for any extended period of time and the pain is debilitating.

I also have an extremely tight feeling all the way across in front of the balls of both feet. I constantly clench, extend and stretch my toes to try to alleviate the pain and sensation. As I mentioned earlier one toe actually deformed laterally and them " hammered ". It is quite painful now.

The burning, parathesia, dysthesia and numbness I have is basically confined to my toes and forefeet.

Both of my knees were drained of fluid muliple times and the Baker's Cysts that developed were drained as well. The one in my right leg actually descended into my calf and was huge beyond belief. The amount of fluid that was drained from it twice was astounding.

I had an elevated sed rate for almost two years. I was tested for gout and pseudo-gout. The fluid drained from my knees and the cysts was tested multiple times for bacterial infections and gout. The rheumotologist did every kind of blood test known to man, plus ultrasounds of internal organs, etc..

No RA or OA yet I still have symptoms of RA. ????? I take Celebrex daily that my GP is nice enough to provide me with samples of since we lost our insurance coverage.

The " knots " in my feet have been injected with dexamethasone in October 2010 and two weeks ago. My GP says that it will make my nuerological condition(s) worse, while the Podiatrist insists it will not. All I know is that two of the " knots " and swelling in my toes went away after the injections last October so I'm game to try again.

As far as the surgery goes - the doctor involved in that process ruined my left foot in the repair of of a simple dislocated 4th toe. I had pain, discomfort and dysthesia in that foot for 18 months before I developed my current condition symmetrically. He promptly and adamently refused to acknowledge that the surgery had anything to do with it, although he did offer to break and reset the fourth metatarsal head that he misaligned through pinning the toe to begin with. It sits far lower than the rest of my left foot, moves up and down with each step and burning nerve pain shoots through the joint with each step as it moves.

The Krill oil I ordered is 350 mg - how much of that?

The B complex I take has 28 mg of B6 in it. The Podiatrist suggested supplementing that with another 100 mg. ????

28 mg is enough of B6. And I think you've had enough of that podiatrist too.

I'd suggest 3 Krill oil a day to start.

I'd go to an orthopedic specialist, one who does feet and ankles.
You are not getting the proper care so far since you are worsening.

This is far beyond alcohol induced neuropathy.

Supplements here will not do much for you without finding out what is causing the "knots" and disfigurement of your feet.

Symmetrical involvement is suggestive of RSD. I hope that is not happening to you.

I would also get tested for Lyme disease. From the special lab Igenex if possible.
http://igenex.com/Website/
Get that ruled out.

Thank you again for your input.

My GP actually mentioned RSD / CRPS. I hope that isn't happening either. My reading indicates that RSD typically affects a single limb as opposed to symmetricals so I'll keep my fingers crossed that it isn't RSD.

I will back off the B6 - continue with the supplements and do the best I can. Take care.

Colt,

I'm a lurker too. Thanks for posting. Just know that your not alone.

-Brian

What happens is that RSD spreads. An injury in one spot, say the ankle, can travel and affect the other.

But these "knots" you describe, those I have not seen in posts here on RSD. In RSD there can be discoloration of the area, increased sweating and cold intolerance and diffuse swelling. Our RSD forum has stickies at the top of the page showing pictures.

Swellings like yours seem inflammatory and systemic.
I found this link describing "calcinosis" in the feet from lupus (autoimmune disease).
These are hard calcium deposits that occur along tendons. They are more superficial and sometimes just under the skin.
Have you ever had your calcium levels run? Parathyroid testing?

I'd start that magnesium ASAP, to balance your calcium.

Here is some further information on calcinosis:
http://www.dermnet.org.nz/systemic/calcinosis.html

I would hold off on the Vit D for now. If you have sarcoidosis, Vit D is contraindicated for that. Have you been tested for sarcoidosis?
This condition affects the lungs commonly. But can occur at other body locations.

[QUOTE=mrsD;760797]Can you please explain what the "knots" in your feet are?=QUOTE]




Mrs. D....with my idiopathic neuropathy in my feet I also have the "knots and bumps" in the balls of my feet. I'm just wondering if this is common with most people who have this disease. I've mentioned it to doctors but I get no answers. Could something else be causing it other than neuropathy?

I had an EMG, and it didn't show any neuropathy, but the neurologist said it's probably small fiber because that doesn't show up in the EMG. It would really be something if after 10 years thinking it was PIN, it turns out to be something else. I've been to 3 different neurologists, and they all give me the same great big nothing!:mad:

There are two small bones in the first metatarsal joint.

These are called sesamoid bones.

They can move around with stress or crack and break.
I have broken ones on both feet.

When they inflame the tissues around them, it is called sesamoiditis. This shows up on Xrays.
http://www.myfootshop.com/detail.asp...oid%20Fracture

I've had one injection in my left foot over the years for this,
and that foot seems larger in the ball area than the other.
But I cannot feel any "knots" or lumps in them.

I am very careful about shoe choice, because of this.

Some of Colt's lumps don't seem to be in this area, unless I am mistaken. Some of his are on his toes... more like spurs. But it can be hard to visualize them from writings on the net.

The feet have little extra tissue, so deposits of calcium or spurs appear easily, and can be felt. I've seen gamers who play lots of hours with those controllers get spurs on tendons in the hand. Typically they resolve when rested for a while.

One should always keep an open mind about mechanical issues with the feet.

This website I found is very good, showing the bones, nerves and blood supply. There are many parts of this website worth looking at. I found an alternate way to lace my shoes to take the pressure off my sensitive instep there!
https://www.northcoastfootcare.com/p...echniques.html

http://www.northcoastfootcare.com/

While you were under all that early stress?
 

Did you have some sort of 'cold' or 'flu' crop up? That sort of hung around for a while? That could trigger some auto-immune issues triggering your neuropathies. I know that it did for my situation. That and or the anti-biotics used to knock it out? Cipro or some other 'bad guys'
Between the stressors in your life AND the flu or other virus in you...well, it can set off the equivalant of the 'keystone cops' in your own body!
To be brutally honest? Getting tested again, and likely more times? Well, it may seem redundant? But if #'s of key blood factors get worse then there is indications of 'things getting documentedly worse'. It is pitiful to say that that might be a good sign? Why? Because it points to clearer directions as to what mite be wrong!
Also take into consideration that many of our pain meds...well? Leach out a lot of our needed calcium and other good bone factors.. Happened to me w/the double whammy of an Immune neuropathy and cancer. Mrs D has heaps of almost mind-boggleing advice under the supplements forum and here as well. I too have fractured metatarsals just stepping wrong on pebbles! No kidding! [Some more than once?]
Lastly? Are those knots and bumps simply just bone? W/o muscle tone? That part is far easier to 'feel' but, it doesnt work as well as there's less fat and muscle padding. It IS something we take for granted until we don't have 'IT' anymore! Good luck, get tested more than throughly and get a diagnosis you can live with that gives you at least a couple of answers. You won't get all of them, but some. Hope and hugs - :hug::hug::hug::hug:!!!!!'s - j

Part of what makes getting a dx of rsd hard is that sometimes one does not have all the symptoms or the usual of why it happened. That was me and I have rsd and pn. It also has changed over the 4 years.
Have you been to a neurologist? I am sorry if you mentioned but if not I would.
I know you stated about alcohol but did you have any problems with drugs rx or not?
I know addictions are so hard to beat but you can. Whether this happened because of the alcohol or not it does not help you now by drinking which I am sure you know in your heart.
I hope you feel better