New to the PN world-seeks advice
 

Hi out there. Diagnosed with PN about five months ago.
Male 54, started waking up with tingling/numbish right hand at night. Followed by gradual numbness in toes in both feet, then soles of feet. Occasional random shooting pains mostly in feet but also all over the body, (not nearly as much pain as some, I know) Pains seem to be increasing. Feet tend to get sore when I stand or walk for long periods. Feet feel spongy and mushy. Putting them up helps a bit. A bit of a loss in manual dexterity. Hands hurt when gripping things tightly.
Am embarrassed to mention this--but I've lost some sensation in the penis. Everything still works, but definite loss of sensation. Typical to PN?
No diabetes, blood tests normal so far. EMG shows mild damage to feet and arms. Wonder if anyone out there with similar symptoms has found a cause or possible cure. Wondering if there is a normal arc of progression of worsening symptoms. Saw neurologist twice. He was vague on what to expect in future. Are shooting pains always followed by nerve damage in that area? Thanks, IG

Neuropathy can be so variable--
 

--in etiology, progression, and distribution beyond the usual "glove and stocking" (feet/leg/hand) pattern that newbie medical students learn as "typical" it's very difficult to comment on any of this yet.

Shooting pains are common, and often represent some sort of ongoing nerve assault. Of course, so does burning, tinlging, and a lot of other parasthetic sensations. Numbness tends to represent a more advanced stage, when nerves stop sending signals.

What kind of testing have you so far, in detail? It's been the expereience of many here that unless one lucks out and gets to a neuropathy specialist early, many neurologists think in a very limited way as to testing, part of the reasoning behind the Liza Jane spreadsheets:

www.lizajane.org

These are as comprehesive a listing of tests for neural symptoms we could come up with, and the spreadsheet format allows one to track results over time (and suggest further avenues to doctors).

Hello Ian....

I have some questions.

What was going on with you 5 months ago? Vaccines? Illness?
Did you start some new routine like exercising, or did you go on a vacation somewhere? Were you exposed to solvents doing any task or woodworking?

Have you had thyroid testing?

Have you been to a podiatrist and been evaluated for any foot problems...spurs, sesamoid bones, ankle issues, pronation, neuroma, etc?

What drugs do you take? Statins? Did you use any antibiotics just before or during the onset of your symptoms?

What is your diet like? Are you a vegetarian? Do you eat fast food alot, or processed foods? (may contain high levels of MSG).

Do you take any vitamin or mineral supplements? Before this onset did you take any?

Do you get digestive upsets frequently?

There are over 100 causes of PNs....one has to be a detective of sorts, to figure things out and some doctors don't spend that time with you.

You need to tell us more.;)

stages???
 

hello everybody
this is my first post, sorry jump like this. im really intrigued about your post Glenn. as most of PNers, i have lack of knowlegde about my own medical condition, and unfortunately the doctors here doesnt help me (im in UK). im so thankful for all the posts here. i've been follow advices and get inspiration from you.
i have PN for 3 years now after a car accident, had hip dislocation, damaging my peroneal (i think),!!! i never saw a neurologist!!!, just doctors from pain management, nerve conduction tests and ortopedists. they didnt give me a clear explanation about PN, its been long time since my last appointment. i feel like they put me on the corner, like "theres nothing we can do, so keep taking your painkillers".
since them my foot has improved, i dont get the same pain as before. today is mainly stiffness, numbness and swing temperature, most of time is ice cold. so would you say that my nerve stop send signals? is that means the nerve is "dead"? could someone please tell me more about those stages? or tell me where can i read accurate information about it.
thank you so much for your time and help in advance.

[QUOTE=mrsD;628264]Hello Ian....

I have some questions.
What was going on with you 5 months ago? Vaccines? Illness?
Did you start some new routine like exercising, or did you go on a vacation somewhere? Were you exposed to solvents doing any task or woodworking?
Have you had thyroid testing?
Have you been to a podiatrist and been evaluated for any foot problems...spurs, sesamoid bones, ankle issues, pronation, neuroma, etc?
What drugs do you take? Statins? Did you use any antibiotics just before or during the onset of your symptoms?
What is your diet like? Are you a vegetarian? Do you eat fast food alot, or processed foods? (may contain high levels of MSG).
Do you take any vitamin or mineral supplements? Before this onset did you take any?
Do you get digestive upsets frequently?
There are over 100 causes of PNs....one has to be a detective of sorts, to figure things out and some doctors don't spend that time with you.

You need to tell us more:).


Thanks for the response! I appreciate it.

No vaccines, travel, etc.
Yes-tested for thyroid. Negative. Lymes disease = negative. Protein tests = normal. I'm not sure of all of the tests done so far.
Podiatrist thought it might be hammertoe. Gave me cortisone. No help. He was wrong.
Occasionally took vitamins beforehand. Now take them daily.
Am not taking any prescription medications. Occasional ibuprferon.
Diet OK. I'll try to note MSG.
No frequent tummy upsets.

I don't think this would cause PN, but as a teacher I use Epo dry erase markers daily and the fumes do bother me. I discovered that they do contain nasty solvents. But if they were truly dangerous, there would be some kind of epidemic, no?

Spent two days scraping and painting old fencing about 6 monts ago. I'm sure it was lead paint, but I don't think 2 days of exposure would be enough to cause a problem.

Thanks again!

regarding dry erase markers:

http://workplaceculture.suite101.com...d-markers-work
Also, if you think your paint was lead based, I'd get a blood test for heavy metals, including lead.

Some people cannot metabolize alcohols properly. This can be due to a deficiency in thiamine, or a genetic error in dehydrogenase enzymes that use thiamine. So the first thing I'd do if I were you is get a blood test for heavy metals.
Then I'd try some B1 thiamine 100mg tablets 3 times a day for a month. If this works you can move up to the better longer acting thiamine-- benfotiamine. 300mg a day for 3 months to see if you have any improvement.

This is just a beginning impression I have based on your history so far. Sometimes PNs are from exposure to environmental substances... arsenic, lead, cadmium, solvents, pesticides.