newbie & newly diagnosed with PN in my feet
 

Hi everybody, I am 47 & was diagnosed with PN in my feet about 6 weeks ago.

At the end of May, my feet started to burn & were really sore when I exercised or walked any distance. This got worse over the next four weeks & my big toe on each foot went completely numb.

I went to see my GP who mentioned nerve damage,& did a fulll blood screen, but all came back normal. He then said I had idiopathic PN.

I returned to my GP, who gave me lyrica, which did nothing for the pain, & made me feel awful. I have now been given amitriptyline, but have only been on them for a week, but no change as yet.

My GP has also requested a nerve conduction test

my feet are getting worse by the day, or so it seems. They have a constant dull ache & tingle. On a night thet burn & hurt so much that I cant sleep, I cant even stand the cover on them.I can wear sandals, but cant put boots on or full shoes as they feel as if they are crushing my feet.I have some capsaicin cream which gives temporary relief.

I am finding this very difficult to accept. I have read a lot about it & its quite scarey.
I cannot work at the moment as I am a personal trainer & fitness instructor.

I cant walk for more that 10 mins without being in intense pain. This all came from no where & I dont know what to do.I though it would be good to talk to people with the same condition, as I'm sure my GP thinks I'm exagerating it:rolleyes:



Sorry for the long introduction.

Cath

Hi & welcome.

There are MANY causes of PN. Your sudden onset can indicate compression, injury, autoimmune, or some other metabolic disorder. But it still wouldn't hurt to eliminate some of the more simple causes...like diabetes, B12 deficiency etc. MrsD will likely be along to speak more in-depth about that.

It doesn't sound like much testing has been done. I would consider requesting and EMG with the Nerve conduction test and maybe even an MRI to rule out compression/mechanical problems along the spine. Being a personal trainer, is it possible you injured something during instruction or exercise without knowing it at the time?

There is a skin biopsy that would confirm whether it it small fiber neuropathy, but probably best to take this one step at a time and eliminate things as you go.

Since you have some relief with the capsaicin, you might request some lidoderm patches...the relief could last longer.

It certainly wouldn't hurt to get some blood work for basic autoimmune, B12, Vit D, glucose, etc.

Welcome to NeuroTalk:

I think anyone with foot issues should get a good podiatrist and a complete check up.

Sesamoid bones are under the big toe, and these can crack or slip and move and cause considerable pain.
You can have arthritis in the toe joint. Spurs under the toe nails,
tendonitis, neuromas, etc etc.... You should get checked for Tinel's sign, which would indicate compression.

Things in the feet can be due to poor glucose utilization, with LOWs varying with normals or moderate elevations. Low thyroid will also cause trouble with the feet (this was my initial problem).

Some common drugs also can cause this. It would help if you could tell us more about yourself...your diet, how this started, what other things you have problems with, and vaccines given recently and RX drugs used.

PN is a big subject, and people can have one or more contributing factors. You can have a genetic hereditary issue, or some compressive issue in your spine, as well.

I have had bloods done for diabetes,thyroid, Vit B, inflamatory markers for arthritis. I have had an ultrasound scan to rule out neuromas. All tests came back normal.

My diet is healthy, I am a qualified nutritionist as well as a PT. I have had no injuries for a long time now. Between the ages of 8 & 11, I broke both ankles & a bone in one foot, but have had no repercussions from this.

I have had no recent vaccines. I have been taking citalapram & trazodone for depression since my daughter passed away in 209.

My mum suffered from rheumatoid arthritis & spondilitis & had disc problems in her spine.

My fooet pain started at the end of May. At first, I just thought it was aching due to exercise & my age, but when they began to burn, tingle & go numb, I knew it was more than that. That was when I saw my GP.

My toes, big toe & the second one are totally numb, I can touch them with a pin & cannot feel it at all.This is on both feet. It is a very symetrical pain.

Is there anyhting else you need to know??

Thank you for taking the time to read & reply, its great to talk to someone who knows what I am talking about.

Cath x

You really need to know the numbers for your B12 result.

If you are not in the US, I need the concentration also, for conversion to US units.

Lab ranges remain old and not updated to the newer levels considered "normal". Many doctors do not know this, and will
accept a low reading as "normal" because the lab says so.
If you are really low in B12 you may not know it even, and delaying treatment will result in more nerve damage.

In my experience numbness is worse than pain. Numb means that nerve impulses are not getting to the brain, for some reason.

In the foot that can be compression of nerves by the ligaments
that hold the foot together. In low thyroid, mucin a tissue is deposited there to compress nerves. My painful feet eventually became numb and only returned to function once my thyroid was adjusted.

Numbness can come from hereditary issues also. CMT is typically the cause. (Charcot Marie Tooth). We have a thread here about that:
http://neurotalk.psychcentral.com/thread121564.html

Also it may take years for a foot injury to flare up into PN.
I had a tumor removed from my instep over 50 yrs ago, and starting 4 yrs ago (I am 66 now) is when that ankle started to flare up and the scar now throbs. It took all that while for the nerves to grow back after all the damage done decades ago!

I would make sure you have Xrays of both feet...to show any spurs/arthritic changes, or sesamoid issues.

It can take alot of detective work to find answers for PN. So all you can do is keep looking.

have had Xrays of both feet as well as the ultrasound, again nothing showed up.
I am in the UK so will try & get the numbers for my vitB12 results.

When you said the numbness is worse, what exactly does this mean. I know you said it means the signal isnt getting to the brain, but what does this mean?Does it mean it will always be numb??

I dont know if my mum had CMT, I dont recall her saying that. I just know that her discs eroded.

Sorry for all the questons & thanks you
Cath

Hi, Your mother could have had rheumatoid arthritis and CMT. Or she could have been misdiagnosed with rheumatoid arthritis to begin with. There are DNA blood tests to rule CMT in or out. At least DNA blood tests for the types of CMT - and there are many - that they can test for.

Any others in the family who might have some of the same things going on?

My mum & dad are both dead, I only have a brother. He has gout which has got better with alteration to his diet, but no other problems.

I am trying to learn as much as possible, so at least I have lots of question for the Dr next week.

Cath x

There are also bone marrow disorders that make too many
proteins in the blood. MGUS is one diagnosis of this.

When the blood is thick, it cannot circulate and toes and fingers show the first signs.

http://en.wikipedia.org/wiki/Monoclo...d_significance

There are also toxins. Exposure to insecticides, pesticides, heavy metals like arsenic, mercury, thallium (ant poison), etc.
Were you tested for heavy metal exposure?

Were you exposed to solvents? Refinishing wood? Hobbies involving solvents? No antibiotics in the recent past?

There are also bone marrow disorders that make too many
proteins in the blood. MGUS is one diagnosis of this.

When the blood is thick, it cannot circulate and toes and fingers show the first signs.

http://en.wikipedia.org/wiki/Monoclo...d_significance

There are also toxins. Exposure to insecticides, pesticides, heavy metals like arsenic, mercury, thallium (ant poison), etc.
Were you tested for heavy metal exposure?

Were you exposed to solvents? Refinishing wood? Hobbies involving solvents? Antibiotics in the recent past?

have never been exposed to toxins or solvents. I haven't had antibiotics for years. I am normally fit & healthy.:)

Hi,

So sorry you are in so much pain. I have had a very similar experience: healthy conscious, runner, worked out most days, then suddenly last summer horrible heel pain that has spread now up my ankles, with sensations elsewhere in my body.

This group is a very good resource. I have found it much more helpful than doctors.

Try to stay calm and not focused on the pain because that makes it worse (VERY hard to do, I know!!!!!)
Heather

Hi Cath
 

Welcome to Neuro Talk. There are alot of us with this condition. I either have PN or RSD. I have declined an EMG, as all it will say is yeh yeh yeh to one or the other. My doc. isn't going to make me go through all that. Also there is a special lotion that helps alot. PM me for list of ingredients if you are interested. This has allowed me to get off much of the medication I have been taking for it. Sorry this happened to you. Causes, well, I don't think the doctors even know. Try to seek a specialist in this, not just a GP. I found help first with an orthopedic surgeon, who guessed the PN, then a pain specialist/ physiatrist. I wish you all the best. No, this isn't fun to have at all. I will keep you in my thought and prayers. ginnie:hug:

Hi Heather, sorry to hear that you are in pain too. Today my right ankle is really painful & I cant get it comfortable at all.

You are right about trying not to focus on the pain, & I am trying to kep busy. Its very hard though as you say.

I have learned a lot already from this forum & Im sure I will learn a lot more.
Cath x

I can't offer as much help as the others here, just wanted to add that unless your B12 levels are HIGH then I would consider taking B12. Nothing in the "normal" ranges are normal, and my B12 is off the chart high and I still take B12 cuz it helps.

My personal best advice, don't just accept anything, but research everything out, everything. Test results...look them up YOURSELF. Don't trust the word of the dr that its "normal". Research every drug, every disease, every lead.

NOBODY cares about your health as much as YOU.

I have fired 2 doctors. Yes, fired. I consider them my employee and if I am not satisfied, I leave, hence they are fired. My first dr got very testy when I questioned him on a blood pressure drug. He was giving me a very new drug and I didn't want it. He got mad, I fired him.

My second dr was great until we discovered I am HypoThyroid and she prescribed synthetic hormones, the standard drug of choice, the "normal" drug used. I didn't want it, I wanted to try desicated natural thyroid. She refused. I left, fired her and found a new dr.

My point is, you have to fight for yourself. Iam sure as a trainer you know what it means to focus and fight...well now you have to focus and fight for your health. Take charge. The internet is at your fingertips, don't just be drug along by a doctor, but be the leader. Ask the questions, read the results YOUSELF.

I am getting better everyday, thanks to MY determination, and places like this forum with amazing help. Benfontiamine has become a MIRACLE for me and healed me of feet burning, and no doctor told me that, I had to find that out for myself, here on this forum and other places.

We need doctors. I believe in them. I go to them. I have simply altered my thinking about them. Since deciding I am their boss and I am in charge of my body, my treatment, my testing and results, I have a much better result and have found a dr who is willing to work ALONG SIDE ME.

I encourage you to keep fighting the good fight and don't give up and remember...YOU ARE THE BOSS.

good luck

Go to a neurologist. Get the nerve conduction study asap. That will show at least which nerves aren't performing. You sound like you need pain relief - and they can prescribe things to help with it. You can get neuropathy and have relatively normal bloodwork. It happened to me.

I see my GP on Monday & will ask for an urgent referal to a neurologist & see if he can speeed up the nerve conduction test. I have tried lyrica which did nothing & I am now on amitriptyline, but only 10 days on that. My bloodwork was normal. Cath

Hi Stacey, I know what you mean about the doctors & I will keep researching & asking questions. As you said, no one cares about my health more than me. I am asking for an urgent referal to see a neurologist when I see my doctor on Monday.
Take care Cath

Are you not supposed to take extra B12 if it is already high in your system? It seemed like if you take the mega doses as recommended here, you will naturally get a high reading? perhaps I am wrong?

I believe Stacy is meaning the "old" lab ranges showing low numbers as normal.

Also if you have inactive B12 in your serum from supplements, and you have the MTHFR genetic mutation that prevents conversion to active methyl form, you would test higher, and still the B12 would not be working. An MMA test will reveal if your B12 is working for you. Or you could get the DNA test for the MTHFR polymorphisms.

If you are taking B12 already, it will read high in testing serum.

Thank you, this is very helpful! Can you please tell me what an MMA test is?

Also, I didn't mean to highjack this thread. Should I have created a new one?

MMA:

http://labtestsonline.org/understand...s/mma/tab/test

If this test is LOW that means your B12 in your blood serum is working. If it is high, then B12 is not.

You can also do a homocysteine test, and if high it indicates that something in the conversion of homocysteine to SAM is not working. 3 vitamins are involved in this conversion,
methylB12
methylfolate
pyridoxal 5 phosphate (which is activated B6 pyridoxine)

Usually the MMA test is enough to confirm a confusing B12 serum result.

My MMA and Serum tests were skewed because as MrsD said, I did not stop taking B supplements before the test, as at that time I did not know I should, and therefore the serum was useless to me. The MMA came in at the low end of normal.

I did not bother with any further testing, as I just started on 5,000 (mcg or mg? one of them) of the B12 and since it is helping me, I continue to take it and B12 toxicity is rare.

Thank you for all the helpful information.

Do you know how long you'd need to stop taking B supplements before testing?

I think I remember reading a couple days. However, I personally would stop taking them at least a week to make sure since I am on such high doses.

Thank you!

Have you tried...
 

going to rhemotologist? I've been suffering for quite awhile with burning, tingling etc. Started suddenly at gym years ago. Always had back issues, so I assumed I was workinging out to much and took some time off. Didnt get better. Went to primary doc...rhemo panel came back as autoimmune problem. Going through bad flare now and really can't get accurate diagnoses. Meds have been helping with symptoms, but feet and hands getting spots of numb and unable to feel hot/cold. Good luck