Asking again…I was recently diagnosed after 10 months of pain and swelling in my left ankle and foot, but I don't have a burning pain, it's a dull pain. The neurologist I saw said the cause could be low B12, which my B12 is low (256) and needs corrected, but I'm still thinking there's another cause of the pain because I don't have the typical type of pain. I've had X-rays, an MRI, and a bone scan which didn't show anything except swelling (that I could already see). The doctor that did my EMG said it was PN, but the sports medicine doctor (the 3rd doctor I saw for this pain) didn't agree, but he hasn't been able to come up with any other cause besides possibly RSD (though I never injured this foot except overuse injury from working 12 hour shifts on my feet).

Does anyone else have atypical symptoms?

Mine is a slight swelling on the outside of my left foot and ankle. Started around the end of Sept and hasn't let up since. I've also been to 3 dr's but the last one, my neuro, said small fiber neuropathy does not cause swelling. The orthopedist (2nd dr I went to about it) did xray and the bones are fine. Said it was probably tendonitis and to ask my neuro about it. You can see where that got me

The pain I have is sharp and severe. I still feel it when i'm off my feet but when I walk...oh boy ! That does a number on me. The dull, deep pain I have is in my legs and fingers.

I'm sure someone will come along behind me that will be more helpful. Just wanted u to know we understand.

Debi from Georgia

Yes, I have a swelling ankle...comes and goes. Xrays revealed
spurs on it in several places. It tends to flare when I climb steps alot.

You need to start methylB12 ASAP... get 5mg and take once a day on an empty stomach. You don't really need injections, and they typically are not the active form anyway.

A swelling foot/ankle can also be related to impaired glucose tolerance....it can signal Charcot foot. This is injury to the structure of the foot, when you develop changed sensory ability, and you should get a baseline foot Xray to make sure there are no spurs or hairline fractures developing. The foot and ankle are very complex and you can have more than one issue going on with any pain you have in the foot, or swelling.

I find using Morton's Epsom lotion is very helpful in removing discomfort and swelling for my ankle. You can get it at WalMart in the pharmacy area, and it is only 5.95. Rub it on your ankle and the top of your foot once a day and see what happens.
http://www.mortonsalt.com/for-your-h...-epsom-lotion/

If you choose you can also soak in lukewarm epsom salts in the tub, but the lotion is so much more convenient.

There are 3 major nutrients many Americans are low in because of poor diet and lifestyle.
1) magnesium (up to 70% are low)
2) Vit D (up to 70% are low)
3) B12 (up to 40% are low)

These are all easy to correct, and not expensive and deliver quite a bang for the bucks they cost.

I have CMT, so most of my symptoms are atypical. I have the burning, but it is fairly well controlled. My primary disabling pain is an ache in my legs, it feels like it is coming from the bones and is a persistent, strong, distracting pain, it could be described as dull compared to the sharp, ice pick pains in my feet and ankles.

I will…the neurologist I went to said that I need an injection once a week for four weeks and once a month after that…but she wouldn't order it, she wanted my PCP to order it and they ordered one shot and one syringe with no refills and I don't see him until Jan 28. I'm so sick of these games, so I'll do it on my own.

I've had two X-rays, an MRI, and a bone scan between February and October so there's definitely no spurs or fractures (I looked at the reports). They all were pretty much negative so that's why the 3rd MD ordered nerve testing. My fasting blood glucose is always in the 80's. My vitamin D is also severely low which I've been taking rx strength vitamin D for. Mag was ok.

Debi, the first two doctors I saw said I had posterior tibial tendonitis because my pain is on the inside of leg. They had me wear different braces that didn't help and said the pain would go away, so yeah...

Thanks everyone for the answers. I've never heard PN described as dull pain so I'm just wondering what else the doctors could be missing...

The RX Vit D does not work. You need D3 OTC....use your test results to figure out your dose.
1000IU for every 10 pts you need to raise --use 50 as your goal.
RX D= ergocalciferol and is not active in humans.
This thread explains more:
http://neurotalk.psychcentral.com/thread196514.html

Now blood testing for magnesium is not really useful in the mid ranges. This is because most magnesium needs to be in the cells.
Very very low result and very very high results are useful medically and indicate life threatening situations. But the mid range does not tell what is really going on with people.

This is why I suggest the magnesium lotion. Try it for a week...you'll see improvements. Just about everyone does.

Thanks. I have felt that the RX vit D has helped my joint pain (not the pain I was talking about though), but I'm watched a video you posted awhile back and it makes a lot of sense (lower Vit D levels are ok for bone health, but not many other things). I'm going to try the lotion too…that's a really good idea especially since I don't have time to soak in epsom salts most of the time.

Hello Mrs. D,

I have spoke to you on occasion and read all your posts always to have gained so much. I am sure I may be repeating questions already answered but bear with me as I ask them again.

I have something similiar going on yet a bit different. I have been following Fred Davis' protocol and having great success. I went from a 2 on a scale of 1-10 to what I currently am which is about a solid 7.5. Occasional 9s. The thing is the legs give up. Alot of aches, twitching, pains, toes cramping, fingers cramping and trembling. Definitely my nervous system. So i thought it was potassium defecincy and started supplementing about 800 to 1000 per day. Nature's Bounty Potassium Gluconate. It relived it slightly BUT the twitching is all over the place. Like my mind is wondering could this be parkinsonss? Do I need to be taking anything in addition to the potassium to combat those symptoms? Magnesium? or D-rose? I'm on the last lap of my recovery and I'm still very confused with the amount of supplements to take as well as dosage. To date this is my regular routine:
5mg of Jarrow methly b12
methyl life - hydro b12 (2 g)
Seeking Health - Homocysteine Formula(methyl folate 800 mcg)
Vit d3 4000iu
vit c
Probotics Gold 2 tablets
Zoloft 200 mg
Armour thyriod .25
Fishoil 3 tablets
vitamin b6 1 tablet
VRP IRON tablet 27+

sometimes I'll take an additional vitamin b12 methyl b12.

What is your suggestion to fix the twitching and leg pains. Is there something I'm missing or something I need to change. Almost there.
Happy Thanksgiving!!!!!Absolutely LOVE the pilgrim and amercian indian
dog and cat. thanks so much. Kathleen

Your problem may be the Zoloft. That is a high dose.

SSRIs...over time, increase serotonin activity in the body. Over 90% of the drug works in the body, and only 10% in the brain.
High serotonin levels do all sorts of things. They cause flushing, and tingling in the skin. (some opiates do this too (itching), because they stimulate serotonin release in addition to their pain actions).

http://www.aafp.org/afp/2003/0915/p1135.html
I don't understand Paxil on this list, but cyproheptadine is available in US for use. Pizotifen is not available in US... but I believe it is in Canada. Dr. Jay Cohen, MD who we link to alot here uses it for blocking his erythromelalgia symptoms (in his feet). He mentions on his site getting his from Canada.

Some people who take SSRI drugs for a long time, develop an imbalance of the dopamine. This neurotransmitter may become less available, and when it does, it causes leg cramping and cramping everywhere and muscle twitching. Your concerns about Parkinson's is accurate because that disease is a lowering of dopamine actions too.
This link explains the spasms and other symptoms including itching ..
http://www.drmurphreestore.com/newsl...singtruth.html

I'd discuss with your doctor, tapering off the Zoloft for now. You might be very surprised at how miserable that drug can be.

For now you can try the Morton's Epsom Lotion... Appy to the areas you get the cramping/twitching. It is available at WalMart and Walgreen's locally and also online at Amazon. WalMart's price is amazingly low too.

Do you know you are anemic? I would only use iron if your testing at the doctor's is low. Taking iron when a person is not anemic can lead to heart damage.

I would not raise potassium artificially with supplements. OTC supplements have a maximum allowable amount of 99mg /tablet.
Food sources are safer. Many foods provide good potassium amounts. one V8 juice has 800mg per can. The low sodium has over 1000mg per can!

This link gives potassium content for foods so you can check your diet and see what you are getting. 4500mg is the new daily goal.
This is a sample page for edamame beans. These are precooked and frozen, inexpensive and very good.
http://nutritiondata.self.com/facts/...roducts/9873/2
potassium =676mg
Some frozen veggies now come with them added in a mixture.
I use a Steamer version that has a mix of black beans, edamame, carrots and peas. You can buy them alone...as well, and you just defrost them. Throwing them in boiling water for a minute or two. Then shell them. They make a good snack too. They have a unique butter nutty flavor.
Another good source is pepitas (pumpkin seeds)
Now this serving size on this page is huge...you don't need to
eat that much of course...but see they are good sources of
potassium and magnesium:
http://nutritiondata.self.com/facts/...roducts/3164/2
When you want a snack reach for these rather than pretzels which are empty of anything useful (empty carb calories). We found pepitas at our super Walmart recently...very affordable but made in China which was concerning. Most healthfood places have pumpkin seeds too. I also eat unsalted cashews, which we find at Costco for savings.
This is the page for unsalted cashews:
http://nutritiondata.self.com/facts/...roducts/3094/2
One has to pay attention at NutritionData to the serving sizes they post...some are really huge. But you get the idea anyway.

I think if you get off the SSRI Zoloft, things will improve for you.

main website:
http://nutritiondata.self.com/

I also have dull aching pains in my feet, lower legs (feels like it is deep inside), & buttocks. Dull pain is not what is generally listed as a PN symptom--I guess you noticed that. Mine is apparently hereditary since my mother has it too. I have not been diagnosed with CMT and don't have any obvious deformities. I have had sharp pains in my hands and feet before but reversed them with diet.
Ron