Input please for new person
 

Good day to everyone. I have been lurking here since last October taking in information. My situation with PN is a bit different and I've finally built up enough nerve to share it here with the hope of getting some input.

In 2008 I lost my job to the economic down turn in the housing industry. At the same time my father who suffered from Alzheimer’s began to decline dramatically and I started helping my mother with him. I became very depressed and started drinking heavily. Last year my father died in February and I basically went off the deep end drinking even more.

In early April I quit drinking and went through a fairly severe week long withdrawal. In May I got severely depressed again and went on a week long drinking binge. I woke up at 6:00 am in the morning with my legs shaking uncontrollably and very disoriented in withdrawal. I went to the ER, was admitted, stabilized and released two days later.

On the day I was released I noticed that my feet felt swollen and tingly. I didn't know anything about PN at the time. As days passed my feet began to hurt and ache. Felt like huge bee stings in the balls of my feet. Walking became painful as if walking on spikes. My toes began to swell with dysthesia, paresthesia and pain. One toe actually disfigured. I developed severe " knots / lumps " in the balls of both feet.

I went to a podiatrist in July and he suggested metatarsalgia which I now know is absurd and injected one toe joint on both feet. No results.

I didn't drink anything for three months, the condition persisted and got worse. During this time I also started researching foot pain and discovered that my symptoms corresponded to PN / nerve damage.

In August I tried acupuncture for a month without results.

In October I tried another podiatrist and he grasped what I was dealing with. He prescribed Diclofenac and injected the worst of the " knots " / capsulitis sites in both feet. I did see and feel some relief over the next month. The swelling in two toes went away and the knots of those metatarsal joints dissipated as well.

I began taking B1 and B12 in late October after reading this board. I also got rid of all my old shoes and replaced them.

In November I was in to see my GP for bronchitis and mentioned my feet. He immediately made the obvious neurological connection and suggested medication for the pain. He had me stop the diclofenac and prescribed Lexapro, Wellbutrin, Celebrex and Gabapentin.

Three weeks later I didn't have any results so discontinued Celebrex and Gabapentin and started Indomethacin and Lyrica with the Wellbutrin and Lexapro. A Vitamin B12 test returned normal at 490 PC.

In mid February discontinued Indomethacin and Lyrica due to weight gain, ringing ears, numb / cold hands. Doctor prescribed Amitryptaline and continue Wellbutrin and Lexapro. Thyroid test and blood panel returned normal.

In two weeks discontinued Amitryptaline due to intolerance. Prescribed Desipramine. One week discontinued Desipramine due to intolerance.

End of February I discontinued Lexapro and Wellbutrin due to perceived autonomic neuropathy symptoms with urination, sexual dysfunction, etc.. My advice re meds like Neurontin and Lyrica from recent experience - don't do it.

Currently my feet feel like walking on rocks and damaged bones with burning and pain. Burning and pain continues at rest. I have one toe that is now disfigured and “ hammered “. Difficulty sleeping and functioning. Instability when walking.

No response to ice, acupuncture, new shoes and socks, DMSO or Capsaicin, very limited response in pain relief to medications. Slight temporary relief from massage, stretching toes, legs and feet. Warm salts soaking feels good, but no real relief.

I had shots in both feet last week to try to get rid of the remaining three " knots " that I have, so right now my feet are really screwed up with paresthesia and more pain than normal. If I can get rid of these knots and swelling at least I will be able to walk better.

So there's my situation. I never had any symptoms of classic alcoholic neuropathy prior to May of 2010. The onset of this happened two days after my withdrawal episode overnight.

There's maybe more to the situation related to a reactive arthritic condition that I developed in the summer of 2007 and a foot surgery in October 2008, but I'll leave it here for now. I feel like the withdrawal episode is what caused my current condition.

FYI I am 51 Caucasian male, 6'3", 235#, blood pressure 120 / 75, decent diet, excellent health up till 2007. Take the following supplements:

Benfotiamine
Methylcobalamin
Folic Acid
B-6
B-Complex
Magnesium
Fish Oil
Vitamin C
Vitamin E
Multi-vitamin

Yes I do drink some again and yes I know it's stupid. Not excessively, no hard spirits and not all the time. If you want to bash me for it you'll have to stand in line behind me.

I am still unemployed as I’m not even sure if I can function working with my feet like this, no health insurance and no resources for neurologists, tests and such. The expensive medications I mentioned were all given to me by the doctor.

Any constructive input is welcome please. Thank you - you folks have a very positive community here.

Then why continue it?

I'm sorry, but there's a part of me that's wondering why we should help you then. So you can get better so you can keep drinking? Whatever anyone has to offer won't do a bit of good if you're going to continue; it would be self-defeating and enabling. On top of that, doctors won't describe serious pain meds to someone who exhibits addictive behaviors.

Another part of me does feel for you, and I'd really like to offer help & support, but I think it begins in another group.
http://neurotalk.psychcentral.com/forum31.html

Your doctor can help you with this now too. Please talk to him/her about it.

Welcome to NeuroTalk.

What kind of surgery did you have? Both feet?
(have you taken antibiotics recently.... Cipro, Levaquin or Avelox?)

Dear Colt
 

I am never going to be the one to bash anyone for their addictions. Both my parents were alcoholic, and I lived it. I will only comfort, and ask you to get help for that if you can. There are groups that you well know about. It is truely up to you in the direction you choose for your life. I knew the demons my parents had. I wish for you better than that. Your pain was also evident in your thread, and I understand PN. I have that from ATTD, need two new ankles, and have had two cervical fussions. The pain and fear just about unhinged me. I found this site and began to get a grip on what to do. My conditions did cost all that I had, and all that my folks saved for me. I was not allowed to keep the money in a trust for me to live. I had no insurance eithor. I became destitute and borrowed money I did not replay from my son. I found the drs. that were able to help, and fought for social security dissabiltiy. Lots of times the real good pain specialists, are picky in who they give medications to. If you are drinking, these meds could kill you quite easily. The doctors don't want that to happen for sure. I would give up drinking in a second, to get the relief I did from the surgeries and the pain medications that allowed me to live a better life. It would't be a contest for me, as I wanted to keep walking, and get my neck fixed. If you really put your priority of your health first and examine what the doctors will expect of you, you should refrain. Then you would get some relief, maybe the PN will calm down. Pain specialist have to be picky, and actually neruologists are too, as they prescribe meds also. I do wish you all the best, I hope you see the PN thread, and keep in touch with us. I also hope you get some good information on your condition to move forward and feel better. ginnie

Going thru quick alcohol withdrawal, can result in an overactive nervous system. Alcohol is a depressant. People who detox too quickly can have seizures! It takes time for the nervous system to settle down, during detox. Alcohol is anesthetic to pain. So increased pain anywhere is possible.

I think you should consult a good addiction doctor to find out if it is possible your foot issues are due to that.

But it is also possible your foot pain is due to something else entirely and the alcohol is just masking the pain. Also alcohol will raise triglycerides and this may make the blood thicker and impair circulation to the feet.

We don't get very many people here with alcohol PN. One would think there would be more wouldn't one?

Thank you for your responses.

Just to clarify, my condition does not correspond with alcohol induced neuropathy which occurs over time and with a different set of symptom parameters. As noted my condition started and increased in severity during a three month period of total abstinence from alcohol.

I have discussed this at length with my doctor and he concurs that it is not alcohol in itself that caused the condition, but more likely the withdrawal episode and the partial seizure that I experienced. He also feels that the damage may heal with time. I posted here in hopes that someone may have experienced / or knows someone who has had a similar experience as mine and might share information.

My surgery was for the repair of a dislocated fourth toe on my left foot. Following the procedure I developed severe dysthesia in that toe and the adjacent third toe. The metatarsal head is out of alignment and there seems to be a nerve entrapped that has caused pain and discomfort while walking and at rest since October 2008.

I have taken Avalox in the far past but not within the past five years. As for other drugs - I was offered opiate narcotics by two podiatrists and declined. Not interested.

I am looking for possible answers and suggestions, not miracles. I don't think anyone does that here realistically.

And yet--
 

--people with long histories of alcohol use often suffer from malnutrition--alcohol leaches B-vitamins and certain minerals from the body, in particular--and that is an avenue that should be explored, even given that you are now supplementing. (There's still some controversy as to whether "alcoholic neuropathy" comes directly from the action of alcohol on nerves or from the nutrient deficiencies that result--perhaps both.)

I notice that you didn't mention how much of each supplement you were taking--that would be useful.

That 490 B-12 reading was a red flag, from my perspective. That's too low, no matter what the standard ranges say. Most of us like our B-12 levels nearer to 4 digits; Mrs. D's B-12 thread has a number of examples of papers showing symptoms of deficiency in people at that level or even higher, and suggest methylomaic acid (MMA) and homocysteine testing as being better indicators of B12 deficiency. And you may be suffering from other low levels as well (as you mention, this is not one of the things doctors think to test for immediately).

It would seem that you would need a more comprehensive work-up with a lot of other testing for autoimmune markers and the like, just to rule out some sources of acute/sub-acute neuropathy symptoms. And yes, such symptoms can be mimicked by brain/spinal cord problems, such as seizures or nerve root compromise.

And, at the risk of sounding simple, have you had any testing beyond a fasting blood sugar for diabetes/impaired glucose tolerance/insulin resistance (certainly common for your age/demographic)? Neuropathy symptoms are increasingly found in people with impaired glucose regulation well before frank diabetes can be diagnosed.

I agree with Glenntag, were my thoughts exactly. So, just double those thoughts and welcome to the forum.:hug:

Thank you for your input. Supplement levels.

Benfotiamine 300 mg / decreased from 1 month at 600 mg
Methylcobalamin 3000 mcg
Folic Acid 600 mcg
B-6 100 mg
Magnesium 250 mg
Fish Oil 1000 iu
Vitamin C 500 mg
Vitamin E 400 iu

Conventional B-Complex
Multi-vitamin

I will look in to the testing suggested to see if it something I can consider at this time.

Interesting that you mention the auto immune markers. In June of 2007 I began to experience symptoms of arthritis that manifested in my arms, shoulders, sternum and neck. Shortly thereafter the symptoms spread body wide. My left knee then developed severe swelling and cysts. In 2008 my right knee followed suit. My ortho referred me to a rheumatologist and I underwent extensive testing for a period of ten months without any definitive diagnosis. Shortly prior to the onset of the condition I had suffered a serious bout with a bronchial infection. The rheumatologist offered that my condition could be classified as reactive arthritis. I still suffer from it currently generalized over my entire body.

Can you please explain what the "knots" in your feet are?

Are they swellings at the joints? On the tendons...? or just tight feelings?

I am getting an impression you have an inflammatory thing going on since you had that synovitis in you knee.

It may be a combo of things with you. Inflammation, left over issues from the surgery, etc. What injections did you get in the feet? What was in them?

Have you ever been tested for gout (uric acid)? Or pseudogout (calcium)?

I think you have more than one thing happening and it is confusing your issues.

For inflammation you will need much more fish oil. More like 3 a day. I'd also stop taking extra B6 if you are taking a multiB complex.

I'd also make sure your magnesium is NOT OXIDE form.

And get tested for Vit D3. ASAP and take appropriate doses determined by your test results. Do not accept the RX 50,000 that doctors write for...as it doesn't work well.
Figure 1000IU D3 for every 10 points you want to raise based on your blood work. Proper Vit D levels will prevent upper respiratory infections and calm the immune system.

There are anti-inflammatory antioxidants. The most affordable one that works is grapeseed extract. At least 200mg a day of this may help with arthritis. There are others... enhanced absorption curcumin and also astaxanthin. Eat as much antioxidant containing foods that you can. Blueberries, strawberries etc.

People very low in Omega-3's often have inflammatory problems, poor stomach lining and poor lining of the lungs. (this latter issue results in many infections and pneumonias.)
Our Vitamin forum has EFA information and a Vit D thread. Both can help you, I believe.

If your magnesium is Oxide...then change that to a chelate that is better absorbed. Omega-3s need magnesium to be metabolized properly.

I think you have some very complex issues, and they are not going to go away quickly. So you have to be patient, and try to read the posts here that we have amassed over the years.

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

Good morning.

Hi Daniella.

I don't feel that my condition is RSD due to the fact that I don't have any of the " classic " symptoms other than burning pain. No accelerated nail or hair growth, changes in color or temp ect.. While I do have swelling in several toes, it is localized and that has subsided over the past six months in several of them. I guess only time will tell.

No drugs prescription or otherwise and thank you for your kind words re addiction. While it would certainly be better to abstain from alcohol entirely given my history, I am currently able to enjoy having wine with dinner or beers and burgers without it being an obsession. I guess only time will tell there as well.

Dahlek,

The " knots " are swollen soft tissue inflammations around the metatarsal heads where they meet the toe bones. I did have a flu like illness in April of 2007 that the rheumatologist I saw and my GP suspect of being the precipitating factor in my development of reactive arthritis and everything since then. TX for your input and hugs!

Mrs. D,

The " knots " I have are located at the metatarsal toe joints as mentioned earlier. They do extend just forward of the joints toward the toes in the ball of the foot, but they are not on the toes. The toes forward of the knots are the ones with the worst swelling and dysthesia. Currently there are three; used to be five. I can only hope that these will subside like the others did last fall with the dexamethasone injections.

I checked my medical records re lyme testing. I tested negative with my GP in 2007 and again with the rheumatologist in 2008. GP doesn't feel that another test is necessary at this time given the timeline of developments.

Haven't been tested, but I have zero symptoms of sarcoidosis so I'll proceed with the Vit D when it arrives. I actually have very high hopes for the D3 supplementation including the neuralgia pain and eczema skin condition(s).

Thanks again to all.

Also thought I would share these images. I found them very useful in visualizing what is going on with the nerves in my feet.

Thanks for the clarification.

That spurred me (bad pun) to look for more foot related pain sites and I found this one:

http://www.footdoc.ca/www.FootDoc.ca...atarsalgia.htm

It is pretty interesting.

I am not saying you do or don't have rsd but when I was dx I did not have the nail issue though now I do but it took years for that to happen. I did not have the color changes but do now in extremes. Again not saying this is your dx and myself and others on rsd forum have multiple dx. Like I have PN as well. Did you say you had been to a neurologist?

Welcome
 

Have you been to a Rheumetologist? spelling wrong . Nave you had any kind of rash? I described your symptons to a doc friend and suggest you see a Rheu. doc. I drank heavily before my back Fusion and have nt had a drink since my Fusion because I am almost pain free. I was an emotional drinker too, just be aware. No bashing from me. Good luck

Update
 

Update for anyone who might be interested. I am told that my condition is due to psoratic arthritis. I tested negative for RA factor several times in past but that doctor discounted the possibility of psoratic arthritis because I don't / didn't have psoriasis. A different physician now tells me that I have psoratic arthritis despite the lack of skin psoriasis. My oldest sister does have psoriasis. Both doctors were aware of this. TX to all and have a nice day.

This is a long shot, but have you researched Charcot–Marie–Tooth disease (CMT)? People with CMT develop hammer toes. Do you happen to have high arched feet? Anyone else in your family with PN?

Good luck to you.

Sero-Negative Rheumatoid Arthritis
 

It could be possible that you have sero-negative rheumatoid arthritis. I do. It was diagnosed by my doctor who is from Russia and then by the rheumatology dept at Mayo Clinic in Rochester, Minn. This was done with x-rays because sero-negative means nothing shows in the blood. They did matching x-rays of both sides of my body and I had the markers for sero-negative rheumatoid as well as a spondylarthropy. (arthritic lower spine) My sed rate is normal. I've had both knees replaced and both little fingers have joints replaced. I am currently in remission from the rheumatoid thanks to methotrexate and Humira and low dose prednisone. I hope some of this helps.

Also I agree with Glenntaj. That B12 is a red flag to me. Way too low.

Billye