[lupusmaximus]

In '05 I was diagnosed with cervical spondylosis and the neurosurgeon was going to go in and fix my neck. Due to insurance issues I couldn't get the surgery. I ended up at a pain clinic having progressed through vicodin, percocet, oxycontin and even the Duragesic patch but nothing helped in the four years I was taking the drugs. Lyrica did nothing as did Neurotin. Cymbalta made me want to jump out of my skin. In November, I stopped taking any and all drugs wanting to be able to feel what was really going on with my body in order to get an accurate diagnosis. My symptoms (listing a few) have progressed, although they have been present since my early thirties and some have become worse. Back in the 90's my PC tested me for lead poisoning. I seem to get worse then level off and then get worse again. I have pain and numbness in both hands up to my forearms, and pain (omg the pain) in both feet,legs and hips. My right leg used to be worse but now the left leg is getting as bad, some days I can barely walk. Starting in November I started getting cramps in my feet and sometimes the outer calf and inner thigh. Most times I feel like the muscles in my legs are firing? and I can feel them twitch and pop. I say cramps but they can't be rubbed out and I dare not try to stretch them out lest another muscle start cramping. I'm terrified to go to sleep at night because just moving my legs/feet can bring them on, I can't even swim in the pool anymore because the movement brings on the cramps. The muscles feel like they are knotting up and won't let go, the end result is that I scream into my pillow with a lot of "Please God make it stop" interspersed until the cramps stop. My big toes feel like they are being pulled upward and I'm constantly tripping over my feet. After a particularly bad night of cramping I went to the ER and got a referral to a neurologist. The first appointment all he did was talk to me about personal stuff and then set up a test for NCS and EMG. The NSC was abnormal and the EMG was normal for the right side he tested. A tech did the NCS and I ended up speaking to him more than the doctor. He said that it was probably in my spine and to go back to the neurosurgeon. Today I had my appointment with the surgeon who said yes he could fix my neck but that it may or may not solve the problem in my arms but it wouldn't do anything for my legs as my MRI was not that much changed from the first. I've had an MRI of my cervical and lumbar spine although I often wonder if the problem could be coming from the way my spine makes a C curve between those two regions. I opted to wait before resorting to surgery.To be honest I fell apart because I was hoping the problem with my neck was causing all the other stuff. When I asked the surgeon what to do next he suggested a "lifestyle change". I am about 40 lbs overweight and I do smoke, although not like a chimney. However, despite being overweight I am physically capable. A strength test required for work in 06 resulted in the Dr telling me I was one of the strongest women he's ever come across. That is not the case nowadays as I am losing my strength. If I do the "drunk" tests of balance and walking heel to toe I can't do either one. My grandmother was diagnosed with ALS and Charcot Marie Tooth, her daughter and her daughter both have MS. I don't know where to turn anymore. I live near a large teaching hospital, Duke, but you need a referral to go to the neurology department. Could this all be caused by my extra weight? Is it all in my head? I hate to sound like a whiner as I know there are folks who are far worse than I am but I don't know what to do at this point. Thanks in advance for any advice/suggestions.

[Apollo]

Originally Posted by lupusmaximus

In '05 I was diagnosed with cervical spondylosis and the neurosurgeon was going to go in and fix my neck. Due to insurance issues I couldn't get the surgery. I ended up at a pain clinic having progressed through vicodin, percocet, oxycontin and even the Duragesic patch but nothing helped in the four years I was taking the drugs. Lyrica did nothing as did Neurotin. Cymbalta made me want to jump out of my skin. In November, I stopped taking any and all drugs wanting to be able to feel what was really going on with my body in order to get an accurate diagnosis. My symptoms (listing a few) have progressed, although they have been present since my early thirties and some have become worse. Back in the 90's my PC tested me for lead poisoning. I seem to get worse then level off and then get worse again. I have pain and numbness in both hands up to my forearms, and pain (omg the pain) in both feet,legs and hips. My right leg used to be worse but now the left leg is getting as bad, some days I can barely walk. Starting in November I started getting cramps in my feet and sometimes the outer calf and inner thigh. Most times I feel like the muscles in my legs are firing? and I can feel them twitch and pop. I say cramps but they can't be rubbed out and I dare not try to stretch them out lest another muscle start cramping. I'm terrified to go to sleep at night because just moving my legs/feet can bring them on, I can't even swim in the pool anymore because the movement brings on the cramps. The muscles feel like they are knotting up and won't let go, the end result is that I scream into my pillow with a lot of "Please God make it stop" interspersed until the cramps stop. My big toes feel like they are being pulled upward and I'm constantly tripping over my feet. After a particularly bad night of cramping I went to the ER and got a referral to a neurologist. The first appointment all he did was talk to me about personal stuff and then set up a test for NCS and EMG. The NSC was abnormal and the EMG was normal for the right side he tested. A tech did the NCS and I ended up speaking to him more than the doctor. He said that it was probably in my spine and to go back to the neurosurgeon. Today I had my appointment with the surgeon who said yes he could fix my neck but that it may or may not solve the problem in my arms but it wouldn't do anything for my legs as my MRI was not that much changed from the first. I've had an MRI of my cervical and lumbar spine although I often wonder if the problem could be coming from the way my spine makes a C curve between those two regions. I opted to wait before resorting to surgery.To be honest I fell apart because I was hoping the problem with my neck was causing all the other stuff. When I asked the surgeon what to do next he suggested a "lifestyle change". I am about 40 lbs overweight and I do smoke, although not like a chimney. However, despite being overweight I am physically capable. A strength test required for work in 06 resulted in the Dr telling me I was one of the strongest women he's ever come across. That is not the case nowadays as I am losing my strength. If I do the "drunk" tests of balance and walking heel to toe I can't do either one. My grandmother was diagnosed with ALS and Charcot Marie Tooth, her daughter and her daughter both have MS. I don't know where to turn anymore. I live near a large teaching hospital, Duke, but you need a referral to go to the neurology department. Could this all be caused by my extra weight? Is it all in my head? I hate to sound like a whiner as I know there are folks who are far worse than I am but I don't know what to do at this point. Thanks in advance for any advice/suggestions.

I am so sorry for your suffering, but you have come to a forum where you will receive some outstanding support and advice. I am not one of the experts but I am sure that they will start to respond shortly to this thread.

Feel better!

David

[mrsD]

Welcome to NeuroTalk:

It appears that you have been suffering for a LONG time.

I have some questions...

What other testing have you had besides EMGs, and MRIs?
Medical testing.
This is a list of typical tests to rule out PN triggers:
http://www.questdiagnostics.com/hcp/...eralNeurop.htm
also more links:
http://neurotalk.psychcentral.com/thread121606.html
Since you have CMT in your family, I'd get that verified for yourself ASAP. It is expensive, but it may save you from surgery if it is positive.
Our CMT thread:
http://neurotalk.psychcentral.com/thread121564.html

Can you recall what was happening when you started with your symptoms back in '05? Injury, sports, some illness like food poisoning, or pneumonia with antibiotics, chronic infections like sinus etc. Exposure to chemicals, pesticides, solvents?

This is "you've gotta be a detective" :
http://neurotalk.psychcentral.com/thread121435.html

There are drugs that cause neuropathies. Most doctors do not know this, or refuse to admit it to their patients:

http://neurotalk.psychcentral.com/thread122889.html

Some dietary intolerances can cause PN... gluten is a major one. So getting tested for gluten intolerance may reveal that.
Nightshade veggies also can give symptoms of pain and burning in the skin.

So the bottom line is that you need to do some homework and consider some things, that perhaps you hadn't thought of yet.
Most of us here have been around for years, and have seen many triggers for PN. Some is life style, some is genetics, and some it iatrogenic (doctor caused).

[cyclelops]

Given there is Charcot Marie Tooth in the family, I would get tested/evaluated for that.

I am wondering if you have ever been on Baclofen? They use that for CMT.

I am so sorry you are suffering like this. I have similar symptoms, and dysautonomia to boot. It's a difficult life. Hang in.

[lupusmaximus]

Thanks to all of you for the welcome and support, especially you MrsD for all the info. I'm still reading through it and have a few questions already but I want to wait till I go through it all to ask.

I have had some bloodwork, I guess you would call it the usual stuff, the doctor never did say what just that the results were normal. I have been tested for Lyme I think, at least that's what I thought they tested for because I went in for tic bites.

I suppose you could say I cut off my nose to spite my face beause I cut my ties with my family doctor and all of the others. Some I felt were patronizing and others, well.....I went to a physiatrist and the first thing out of his mouth was that narcotics don't work on nerve pain which was why I was still in pain and I would need an electrical stimulator implanted to be able to get relief. When I mentioned the family history he told me to stick out my tongue and then said "You don't have ALS. You don't have CMT either because you don't have high arches." The neurologist said it wasn't CMT because I don't have hammer toes. He said I had Carpal Tunnel and peroneal neuropathy, I want to say he mentioned something about axonal neuropathy. He did the NCS and EMG but no neuro exam except reflexes. Maybe I have this all wrong but shouldn't the priority be making an accurate diagnosis before offering treatment?

The numbness and tingling in my hands and forearms has been going on for decades. I first noticed my big toes being pulled upwards back in 95 and that is the earliest I can remember my feet hurting. Back in the late 80's early 90's I did a lot of work with some pretty strong chemicals and lead based inks but the doctor back then did a test for lead poisoning and it was negative. I'll fess up to being careless when it comes to solvents and pesticides at least until recently I was, now I wear gloves. The cervical diagnosis came about as a result of a fall. I'm always falling and I pull to the left when I walk. I used to joke about having Carpal Tunnel up to my shoulders and thought the pain in my feet came from the way I walked. Who knew it would get this bad? The tingling has now progressed up my right thigh.

I've done a bit of research on CMT and I really thought that was it from what I'd read. My son and now my great neice spent a good deal of their toddlerhood walking on their toes. My neice has to be told to put her feet down and walk flat. Everything fit but yet I can't even get a doctor to listen. When I asked about the cramps they did a test for potassium levels and when it cam back normal that was it. No follow up... no nothing. Maybe if I recorded myself screaming they might sit up and take notice. If the test is expensive I suppose I couldn't walk into the local urgent care center and ask them to run it can I? I went online to the MDA website and they have clinics but the woman I spoke to said I needed a referral.

I'm so frustrated and to be honest, I'm worn out. At times I want to say the heck with it and just try to deal with things the way they are. That attitude lasts until I go to bed and make the mistake of moving a leg or foot or toes. I'm afraid too that even if I do get a referral to Duke that they won't listen to me either and I'll have gotten my hopes up....again...for nothing.

I know I said thanks earlier but I'm going to say it again...Thanks. Just having someone to talk to that knows what I am dealing with helps.....

[mrsD]

First thing to look at when muscles spasm and deform the extremities is magnesium.

Here is my magnesium thread:

http://neurotalk.psychcentral.com/thread1138.html

We had a very generous poster come on here with a new lotion product made from magnesium that you rub on.... much easier than oral supplements IMO. I am now using it instead of oral ones:

http://www.cvs.com/CVSApp/catalog/sh...new_crumb=true

Our local CVS has this. Yours might too. Easy, inexpensive and safe.

Many people respond to magnesium supplements because up to 70% of US residents are deficient in this mineral (because of dietary lack).

I would try this first.

Then I would get B12 testing and Vit D testing. If you have had this already and received "normal" as an result, I would get the results and post them here. Lab ranges in US are antiquated and no longer valid ( very low results are reported as "normal"). The B12 thread in the Sticky posts above explains this.

These interventions are inexpensive and very effective for some people. You must try them before moving on to more invasive procedures and tests.

[lupusmaximus]

Originally Posted by mrsD

These interventions are inexpensive and very effective for some people. You must try them before moving on to more invasive procedures and tests.

Does a Red Bull every morning count for the B-12 I'll get a copy of my bloodwork to post. That would make my year if I can at least get it down to a low roar, without any more tests and procedures.

I noticed on the "detective" post there was mention of shoes and such but I couldn't find another page for shoes specifically. Do they make special shoes you can wear? Maybe I've been concentrating too much on finding out "what" is wrong instead of concentrating on what I can do to make it better. Ahhhhh...so much to read now. Thanks again mrsD. I'm a little overwhelmed by the size of this forum and the amount of info available. If I find something I have questions about do I just reply to the post even if it is an old one? Not really sure how this works.

[mrsD]

Yes, you can bump up any old topic.

Here is a "shoes" link:

http://neurotalk.psychcentral.com/thread121539.html

At the top of our index page for PN... at the right is "search this forum"

If you put in shoes you will find other posts. The subforum is rather new and posters tend to discuss shoes alot, so the subject appears often.

This forum was started in Aug 06, and so there are many posts.
We've tried to put the informational ones together in the Subforum above, but things get scattered around anyway.

Red Bull? A blast of sugar and caffeine...basically.
http://www.redbull.com/cs/Satellite/...=1242940966995
No listing anywhere including their website as to how much B-vits are in there. I wouldn't expect very high amounts at all.

One of the first things you need to look at diet wise is getting rid of sugar! Sugar can flare PN symptoms. Sugar increases triglycerides in the blood making it thicker and harder to get the the periphery to carry nutrients in and out of cells.

Sugar contains fructose, and this sugar over time consumed in large amounts is very bad for our metabolisms! This video explains what happens to fructose in the liver:
http://neurotalk.psychcentral.com/thread116672.html

High sugar consumption increases cholesterol, and then the doctors force statin drugs on you, which then poison your mitochondria and you get PN as a result! It is a bad chain of events.