This is my first time posting here, I'm wondering if anyone has similar experience of my symptoms which just ever seem to quite match up. I have no DX but have been referred to a Neurologist who I will see in about 2 weeks time. I was referred by a Rheumatologist who mentioned that I was describing some PN symptoms quite well hence I have come here, previously I have been lurking on MS forums. I have had about 18 months of problems with no relapse.

My really troubling and depressing symptom is a dull/bruised foot pain pain, really typical of just having been standing too long. Quite literally I have pain by the time I have finished taking a shower in the morning - it starts within minutes of bearing weight. I can however walk/move continuously for a few hours before I just have to sit down and rest. I can then get up and go again although a heavy day of walking leaves me with some residual pain for 1-2 days. The heels are the worst, nothing works....no inserts, no gel heels etc. This typically doesn't look like the type of pain I see described here.

I have no swelling in the feet and a podiatrist and physio had no suggestions.

I also suffer with muscle twitching and buzzing - from my scalp to my feet although 95% is in my calves. If I flex the muscles the twitching stops.

The PN symptoms that my Rheumo commented on were the odd sensations to my hands, feet and legs. This started in my hands with an excessively dry, slippery feeling like my hands had been sanded down, I literally douse them in water sometimes to make them feel normal.

I have had an "unremarkable/normal" EMG examination on my legs about a year ago and several rounds of blood tests with little information given to me except for mildly low B12 levels and low Vitamin D which I am taking tablets for. The only good GP I saw said all my reflexes and sensations seemed fine.

The GP's have predictably labelled me as an anxiety case and it has been very difficult to finally get as far as a neuro appointment.

Finally I also have what I would say is an action tremor in both hands and some mild cognitive and co-ordination issues, my handwriting seems to need real concentration sometimes.

Can anyone relate to these symptoms? Especially the foot pain!

I have a fairly advanced hereditary neuropathy, but I do have the same slippery feeling in my hands that you describe. "Like they have been sanded down" describes it perfectly. I often hold things too hard because I can't feel them, I chip plates putting them in the dishwasher,releasing them too soon, just no real sense of my hands. My handwriting has also deteriorated.

Standing also affects me the way you describe, as does walking- relief while I am doing it but increased pain next day. With normal EMG and reflexes, though, I do not think yours is hereditary. Many here can relate to how hard it is to get a doctor to adequately address your concerns without positive test results.

Thank you for the reply....there is no family history of PN to my knowledge although a lot of arthritis on the female side. Having GPs tell me that the pain in my feet is actually all in my head is a frustration....I even had to go through CBT which was a total waste of time for everyone.

Welcome to NeuroTalk, John....

Some questions...

1) When you had your D and B12 evaluated what were the results?
include with the numbers, the letters in the readings.

2) What form of D are you taking? The RX ergocalciferol given by doctors? That one doesn't work in humans very well.

3) Do you take statins, or other drugs for anything? Drugs for stomach acid (GERD) or antibiotics recently or in the past?

4) What kind of work do you do? Exposure to chemicals of any kind? Hobbies? Sports? (weight lifting etc?)

5) Do you know your A1C level and/or fasting glucose level? Do you eat alot of sugar and carbohydrates?

6) Did you have Xrays of your feet to show if you have arthritis, heel spurs or sesamoid bone damage?

7) Do you wear lace up shoes? Do have a clutch pedal in the car you drive? Did you have any vaccines before this started?

8) do you drink often? If yes, what type of alcohol?
Have you been tested for heavy metals? Lead, arsenic, mercury and cadmium?

It is not unusual for doctors to insinuate or frankly say things like this are in your "head".... they can be very insulting and infuriating. We have all had that experience.

I have a couple of books on CBT, my pain levels affect quality of life so that I will try anything. I found that it helped with some issues I have had from childhood, feeling lazy, worthless, etc. I can't say it helped my physical pain though! It seems to be another layer they have added to the criteria for being a good patient, like physical therapy. If a doctor is going to view you as serious about getting better, or in my case, functioning as well as possible, you have to comply with this ever increasing list of things to do.
It can be difficult in advanced cases of neuropathy to separate that from arthritis. I have both and would like to know which is which. My physical therapist recently confirmed my doctor's opinion that it really doesn't matter as there isn't any treatment other than pain management anyway. Arthritis could cause some of your symptoms. Do you get any relief with NSAIDS ?

I hope the neurologist is more helpful.

I forgot to add:

Magnesium is excellent for twitching/buzzing muscles.

Try some Epsom salts in a lukewarm bath, and see if that helps.
If so a good or form may work for you well. Magnesium oxide does not get absorbed, so avoid that.

Here is my magnesium thread:
http://neurotalk.psychcentral.com/thread1138.html

If you do not eat any nuts or consume good fats, Vit E is a good idea to try. Also a good fish oil supplement (or Krill). Fish oil and Vit E will improve circulation to your lower legs.

If you smoke, now is the time to stop. Smoking is very bad for the blood vessels everywhere and often shows up first in the legs as poor circulation.

That's basically what I felt I had to do...comply. Even suggesting that it might not be appropriate added a "negative" label to my notes. I personally thought CBT would have been more helpful after I had some medical proof/evidence that there was nothing organic causing the problems but I still had issues accepting it.

The only medicine I have ever taken is Ibuprofen when my throbbing feet at at their worst and it does help which to me would suggest an inflammatory condition. Neither the GP or rheumo are pursuing an arthritis cause based on a few blood tests and lack of swelling, redness etc etc.

Thank you for the welcome and advice about magnesium.

My answers are going to be a little vague here as I've never asked or been given that kind of detail

The B12 was "negligible"...the GP really mused on whether it was worth suggesting I take supplements.

The Vit D I was simply told was low and I was prescribed Adcal-D tablets - there was a year between the blood tests with the low D levels seemingly replacing the low B12 levels.

I have never taken the drugs you mention in (3) and I haven't taken antibiotics since 2009 after a holiday illness.

I'm office based for an asbestos removal company so plenty of hazardous material there but none in the context of Neuro. Sports wise I've not done a lot since my late teens - 2 stress fractures in my lower back stopped most of that. I've subsequently had a "bad back" for 25 years although in reality it just gets very stiff if I stand for a long time, its not really been a big deal. I also have a curvature of the spine which adds to some of my basic back issues.

I don't know the figures you mention in (5) - my diet can be poor, I basically like all the bad sugary stuff and my weight has yo-yo'd up and down over the last few years. I'm currently in a good phase and have dropped about 6 kilos (of 12 needed) so far this year by walking which sounds ironic.

I have had no X-rays, scans etc of my feet - a podiatrist said my arches appear healthy and I already wear inserts made for me from a previous bout of foot pain that resolved itself perhaps 10-12 years ago.

My shoes are lace up, yes. The heels wear very unevenly as my gait is a little bow legged for want of an expression.

I don't drink or smoke and I'm not aware that I've been tested for heavy metals. I believe I've had a basic blood investigation, vitamins and minerals, arthritis markers, diabetes etc.

I didnt mention in the original post that I have tender/stiff calf muscles too, they don't spasm or cause me major difficulties - just another feature. I also have tinnitus in both ears, starting at different times.

John, have you had a lung Xray recently? Some PN can come from hidden cancers...mostly of the lung in men. Mesothelioma is a risk factor for you if there are airborne particles coming into your office from workers, etc.

PN from cancer of this type is called paraneoplasia. Many other types of cancer can also cause this. There are markers in the blood that can be measured to see if this is present.

It is possible your PN is also coming from your back.

The B12 you take should be at least orally 1mg (1000mcg) and the methylcobalamin type. The cyano is not converted in some people who have the MTHFR methylation mutation. The D should be D3 and not D2...so check the label on your product.
It is suggested now to take the D separate from calcium and to not take more than 600mg a day of calcium when on a D supplement. (this is to avoid calcium depositing in the arteries).

you mentioned the right kind of vitm D ? which kind do you suggest?...

as to muscle spasms I can get these in various places that twitch for days then stop. I get deep buzzing in areas which feels like just one nerve vibrating that does the same thing.

I too have a back that is in bad shape. After my last back pain episode of spasms, which I have several times a yr., I have more nerve symptoms. At night I feel as I am trembling.

I get sensations down my legs. Lately I have had the nerve zaps in my feet and almost a sharp cramp. I do foot problems there too but tend to wonder if this is the neuropathy. The nerve zaps I had yrs ago are now back. By the way, I am not diabetic and think my back caused all this or pinching in other areas.