[lindsayjane]

Well I have been to two neuros now. The first did blood tests, MRIs and a nerve conduction study on my left arm and left leg (at that time I only had symptoms on that side). After the conduction study he said I had PN but he doesn't know why. I went to another neuro that looked at results from all the tests that the first neuro did and did her office evaluation. She said that she would have done the conduction study on both sides and that she doesn't think I have PN. Well I have something!! I went to my primary care doctor and he said I need to quit worrying. He said I could go to every doctor in the city and I may never know what is wrong with me. I feel like I need to see another doctor but I'm not sure what kind. Maybe a neuro that specializes in PN? Or a rheumatologist?

I have tingling around my mouth and in my hands and feet. Pain in my left clavicle, shoulder, and neck. Pain in the left leg and sometimes weakness in that leg. Sometimes I feel like my nerves are in hyperdrive. For instance, I can "feel" loud sounds in my nerves. If that makes sense. That's the only way I can think to describe it. I have constant ringing in my ears and I have trouble sleeping because of a "buzzing" feeling in my head. Does this sound familiar to anyone? I also have symptoms that come and go. Last week it was painful wrists. Today the bottom side of my knuckle on my index finger is painful and the finger is tingling more than the rest of my hand. I apologize for going on and on. I am
getting frustrated. I grew up with doctors making me better. Now they don't know what

[lindsayjane]

....now they don't know what to do....

Sorry about my formatting issues. I am on my kindle and its tricky sometimes.

[Agirlandhertort1]

I am sorry that you are currently doing the doctor dance. Many of us have been where you are (or are still there) and it is a horrible place to be. Please know that you are not crazy, and that we understand what you're going through.

Have you had your ears checked? I initially thought my vertigo was related to an inner ear problem, and I discovered that my left ear has hearing loss. When I lay down at night, I hear things differently on that side.

Are your vitamin levels normal (b vitamins and d)? You should request copies of your test results/chart so you can see what is being recorded. There are others around here with excellent advice and I'm sure they can help you like they helped me.

Whatever you do, don't give up! Even if you "take a break" from doctors, keep trying and pushing for answers. I've recently been referred to a rheumatologist, so I don't know much about them yet, but I've heard they are great detectives.

Hang in there.

[mrsD]

Very low Vit D results in deranged calcium metabolism. Symptoms of numbness and tingling around the mouth is a cardinal sign of this.

So I would get that Vit D tested, and if low get on D3 right away.
The D doctors are still prescribing does not work well, and is called D2. So get tested and come back here with the results.

Also get a B12 test while you are there. Doctors will call very low B12 normal still, because the lab ranges haven't reflected changes in therapy. You should be at 400 or above, in US units.

These are the most common culprits to start investigating.

Another thing often very low in Americans is magnesium. 70% have shown in studies to be a eating magnesium deficient diet.
Here is my magnesium thread:
http://neurotalk.psychcentral.com/thread1138.html
magnesium OXIDE is common in most supplements and is not absorbed and does not help. My thread explains that.

This is a starting point. You have to start looking at your lifestyle and diet and be a detective to see if you can find something that triggered you and set off the PN.
Our subforum above, has posts to help you identify triggers.

[lindsayjane]

My vitamin D was 34 out of a reference range of 30-100 ng/mL.

Vitamin B12, serum was 753 out of a reference range of 211-911 pg/mL.

I have been taking a multi vitamin/supplement for about a month now and it seems to help some. I also take fish/flax oil because someone mentioned it on this website.

I was tested for celiac's disease (blood test) and the test was negative. However, I am beginning to wonder if gluten triggers my "flare ups". I have tried gluten free off and on but I don't think I'm being consistent enough with it.

[mrsD]

the new lowest normal for D is 50. So you could take 2000IU and see if that helps.

Your B12 seems adequate for now. If it reflects your multivitamin use, because you were taking that when the test was done, I'd not discontinue the vitamin. Some multis have B12 in them.

There are compressions that can occur along the spine which can affect many areas. There are also dorsal root ganglia along the spine where nerves may have been damaged by viruses and/or toxins/drugs and cannot heal themselves. Recently some research shows this is a genetic problem with some people, and some research is looking into stem cell therapy. But it will be many many years before this information trickles down to patients. The term for the dorsal root damage is
ganglionopathy:
http://www.ehow.com/facts_6388067_ga...uropathy_.html

En bloc has had a special MRI to show this damage:
http://neurotalk.psychcentral.com/thread147771.html
Perhaps you can ask for this test?

[lindsayjane]

Thank you for the information. I will look into this. I just want to figure out what is causing all of this before it gets worse. I've looked at many potential neurological issues and a lot of people say that early detection is key in stopping progression and/or getting better. I have also read that it often takes many years to get a diagnosis. So I'm worried that I may not figure this out for awhile.