New DX of Peripheral Neuropathy
 

Just dx'd with peripheral neuropathy.

Also have MG (myasthenia gravis - dx'd in 2000).
And fibromyalgia.
And hypothyroid.
High cortisol readings.
And severe hearing loss; both ears; ENT says eustachian tubes are swollen; may have tubes put in. Can PN affect hearing?

Any advice?

Right now symptoms of burning, tingling, buzzing feelings on both feet. Occasional SHARP shooting pains in feet. (First I thought these were imaginary).

Cramping in both legs; from calf down to toes; and from calf up to thighs. SEVERE cramping.

Neuro ran blood tests; so far nothing too bad. Running B12 now.

Any advice?

How do i deal with the burning feet??

What do you do for the SEVERE cramping! 12 on scale of 1-10, I told my internal med doc.

Thanks in advance for your advice.

SoftTalker

Sorry to hear about all the problems your having. One of the first line medications that is commonly used for PN symptoms is Gabapentin.

Muscle twitching & cramping were the first symptoms I experienced. My neuro prescribed Gabapentin, and it does a pretty good job controlling the twitching & cramping. It also helps with the burning/pain for many people as well. (I actually started the Gabapentin before the burning in my feet started, so I'm not sure how much it helps me with that - although I do notice that the burning seems to increase if I'm late taking a dose.)

There are also several other anti-seizure or muscle relaxant type medications that can be used for cramping. And certain antidepressants that are commonly used to help with the pain. Many people require various combinations of medications. (Fortunately I haven't progressed to that point.)

See if you can get a script for 5% Lidocaine patches. When my feet are burning badly, I can slap those on, and they help.

OTC-wise, try some of this Epsom Lotion on your feet. Some people swear by it.

http://www.amazon.com/Morton-Epsom-L.../dp/B008X365AU

Since I came down with SFN, I've had more cramping problems. I don't have a cure-all, but I've made extra sure to drink LOTS of water, and get enough calcium, potassium and magnesium in my diet. I've just recently started magnesium chloride supplements, and they've definitely helped some muscle twitching problems I had, and the cramping seems to have dialed back a little too.

Sorry for you pain, but welcome.

Thanks, A Little Worried, Questions
 

Thanks for your replies (above).

I have already ordered from Amazon the cream, and will keep in mind the other suggestions given.

As I also have myasthenia gravis, (MG)which is fairly well controlled with some hefty MG meds.

The problem with MG is that it can be exacerbated, even with fairly good medicine protocols, by factors including stress, infection, pain, etc.

Pain! Yikes - the pain I have been feeling and the burning, etc. on my feet have at times, been excruciating. And my MG has been not quite as controlled during these moments. Note; MG can affect breathing; I have been hospitalized a few times due to MG breathing issues (called a myastenia gravis crisis).

I appreciate all the info I can get from those here who have PN.
Because I really need to try to get this PN under control, so it doesn't exacerbate the MG. Sigh...............

I am not sure how much my neuro knows about PN, nor my internal med doc. Both have good poker faces; and both have seen me with MG crisis situations, and I was really very very ill.

So far, I have just been dx'ed based on symptoms reported.

Basic blood work has come back ok - just added B12 blood work which I had done Friday.


Question: WHO treats PN? Neurologists or rheumotologists (sorry about spelling). Or?

Just trying to get some info from those who know
The people here.

Thanks in advance for further replies, and again for the ones already given.

SoftTalker
(my username because of how MG affects my voice)

Hmm.......
SoftWalker = could very well become my username for this PN group, based on how my feet are feeling.

SoftWalker...way to keep your sense of humor

My neurologist is the one my primary care doc yields to for treatment and monitoring of my neuropathy. He's the one who prescribed gabapentin for me which I took for awhile, but have since stopped. I think I would have needed to up the dosage to get relief, and just decided to try to adjust and try other things before going that route.

An integrative med doc I saw briefly, though, was the one who prescribed the lidocaine patches and told me that alpha lipoic acid has been known to help small fiber neuropathy. I think it has helped me some in that I don't have the stabbing nerve pain as often as I once did. That's something you might want to consider if it doesn't conflict with your other meds.

SoftTalker:
Generally, a neurologist treats PN.

However, PN can have many, many causes - and if the cause is determined or suspected to be inflammatory or autoimmune in nature, it may be appropriate to be treated by a rheumatologist.

Well, I do hope you are taking some methylB12 to normalize things.

Some drugs (immune suppressants) can cause neuropathy.
You need to check on them.

http://www.drugcite.com/
This is one internet site with postmarking data on it.

The best way is to go on PubMed (like at the top of the page)
and type in the generic name for each of your drugs and the qualifier "neuropathy" and see if any reports show up there.

Teakettles in stereo
 

My hearing is worse because of PN. No Dr. told me this but I remember others having bouts of Tinnitis on this site. Sounds like teakettles in stereo to me. About the cramping, make sure you are well hydrated as this would help co-incide with any other thing that you try. Magnesium could also help w/cramping. Citrate not oxide. I had burning tender tops of my feet and Mortons Epsom Salt Lotion allowed me to use my bedsheets again. When b-12 results are given, the number needs to be above 400. I took Merformin (diabetic) for years and my b-12 was driven to the floor. I hope you get relief, Ken in Texas.

Thanks for your reply, Ken.

I too have tinnitis - quite severe at times. ENT says nothing that can be done for it.

Will start on B12 as soon as blood work comes in.

And as for the magnesium; it is contraindicated for myasthenia gravis; however at this point I am willing to take a chance on it, to see if it helps with the cramping.

That old saying come to mind:
Desperate people do desperate things. The pain I have been having most recently has been so severe; probably in the top 3 of different pain I've had over the years. Because of myasthenia gravis I am limited as to what kinds of pain meds I can take. So guess I am feeling pretty desperate at this time.

Ordered the Mortons lotion on recommendation of another person in this forum; should have it in a day or two.

Thanks again for the info.

Questions:

Is this a "red flag" symptom of PN?
Bilateral pain and burning, etc.?


And dropping items often?
Often! Items slipping through my hands? Inability to pick up things with fingers? Until now, I thought I was just being a klutz. Now wondering if this is PN also. Didn't mention to my docs.

Pill bottle I picked up today slipped through my hands and I had about 30 capsules all over my bathroom floor. Fingers would not "work" to pick them up. Uggghhh......hope I got all of them because I have a curious cat....


I have a billion other questions as a newbie. Will save the others for later.

Thanks again.

the burning pain, is a symptom of neuropathy, have you been checked for diabetes(diabetes nueropathy also starts out as burning pain, at the extremeties. Some people have trouble with metabolizing methycobalamin, but i heard that the hydroxycobalamin is best for absorption, i think you can buy it, its the most natural form.

This statement is inaccurate. Methylcobalamin is the active form, and Hydroxocobalamin is an intermediate form, and needs to be activated in the body to either of the two active forms, methylcobalamin and adenosylcobalamin. Methylcobalamin, adenosylcobalamin and hydroxocobalamin are all available orally without a prescription.(cyanocobalamin is synthetic and is also available orally without a prescription.)

http://en.wikipedia.org/wiki/Hydroxocobalamin


Posters here have a responsibility to post accurate information to others when the post is scientific in nature and not just an "opinion".
You may post a link to illustrate your comments, and I suggest, that you, neuroproblem, do that in the future to avoid confusing people here. It appears to me that you may have some cognitive problems too, that need addressing by an appropriate doctor, along with your other health issues.

B12 chemistry is complex and difficult to understand. So I strongly suggest you post links to support any factual comments you make here about it, or other medical subjects. Our guidelines do not allow for long quotes from other sources. You may quote a short example passage, and follow with the appropriate link. Otherwise we have to edit for copyright compliance.

This is a link to our guidelines:
http://neurotalk.psychcentral.com/thread1293.html

And this is a link to how to post copyrighted information.
http://neurotalk.psychcentral.com/thread37384.html
When you visit a page scroll down to the details at the bottom, or click on their privacy areas if available, and read their copyright rules. Some places like Medscape do not allow even a short quote. So for those I just give a link.

And dropping items often?
Often! Items slipping through my hands? Inability to pick up things with fingers? Until now, I thought I was just being a klutz. Now wondering if this is PN also. Didn't mention to my docs.

Pill bottle I picked up today slipped through my hands and I had about 30 capsules all over my bathroom floor. Fingers would not "work" to pick them up. Uggghhh......hope I got all of them because I have a curious cat....


I have SFN and yes I have a problem holding on to things.....lol....the dropping of pill bottles isn't fun is it ? I have 2 dogs so I try to get them up as quickly as possible. I drop things all the time or knock things over. Trying to pick up change is the pits and can get very frustrating to say the least. I am an almost 53 year old lady and I have to wear pull over shirts....I have trouble with buttons.

I also have not worn shoes in 2+ years. I have to wear those slip on sandals with adjustable strips across the top of my feet. At home I am most comfortable in socks with my feet flat on the floor.

Hope some of this info helps you :) I've been keeping up with your posts and am glad to have you on board but sorry for the reason you are here with us.

Take care.

Debi from Georgia

Yes, I have a "dropping" problem too. I have to think carefully before doing a complex hand task. So I understand completely...