[pinkynose]

Hi. I am brand new to this group and have a few questions I hope someone can answer.

My symptoms came swiftly the end of February following a year of horrible stress that started with me being mugged and ended with my brother's unsuccessful cancer surgery also including other pretty stressful events in between. Two weeks after I came home from helping my brother they began. I have pretty constant burning, pins & needles, itching, bug crawling, random stabbing which occasionally includes my head. I have late night twitching- fasciculations in my legs that really disrupt my sleep at night. They are often more of a problem then the burning. I started researching and initially thought I had Restless Leg Syndrome. I began medicating most nights with Ambien, Xanax and or Ativan. Prior to this I had never taken anything except Ambien for sleep when needed.

I gave in and went to see a Neurologist in May and have been given a diagnosis of Idiopathic Peripheral Neuropathy after a Nerve Conduction Study which showed Neuropathy in my feet, MRI of my lumbar spine which showed issues I've had for years and some very basic blood tests to rule out some of the autoimmune diseases. (There are so many!!) The doctor basically told me that he cannot cure me because he doesn't know what's causing my PN! He will gladly medicate my symptoms but that's it. From researching my symptoms it looks like I have both Motor and Sensory Neuropathy. Does that make sense and does anyone out there have both forms? In addition, I am very troubled by a shaking I got in my arms when I tried to work out my upper body with 3 lb weights. This also happened in my legs when I was taking my regular Pilates class. Some say it's from not working out as I stopped most of the things I was doing to try and figure out the cause, but I know my body and that is not what's going on.

I went to another doctor out of network and she ordered more tests (ANA, CRP-HS, TPO and numerous vitamins and some heavy metals) I do not have those results yet. I tested negative for Lymes Disease. I have an appointment with a PN specialist in September and I hope and pray we can get further then my original doctor was willing to go.

I have started taking a low dosage of gabapentin 2 hrs before bed. It works some nights and some night not. I realize I'm going to need to up my dose but it's only been 2 ½ weeks and I'm being overly cautious because I hate that brain fog that comes with these drugs. If any of you take this drug please share the side effects you have experienced. (BTW I just read that Ambien has PN side effects after long term use!)

I worked with a Neuro-muscular PT who told me some of my symptoms did not match up with my diagnosis. She urged me to try some things I love to get more data, so I went to my dance class. A few minutes into the warm up my calf started burning and felt like it weighed 100 lbs.

Life is very difficult as I never know how I’ll feel or if I’ll sleep. I've put off making plans and am afraid to exercise since my dance experience. I try to stay positive but it is so difficult. I worry that unchecked my symptoms will continue to worsen and I can’t imagine how I’ll deal with it.

I am so glad that I have found this group and look forward to your input.

[zkrp01]

Originally Posted by pinkynose

Hi. I am brand new to this group and have a few questions I hope someone can answer.

My symptoms came swiftly the end of February following a year of horrible stress that started with me being mugged and ended with my brother's unsuccessful cancer surgery also including other pretty stressful events in between. Two weeks after I came home from helping my brother they began. I have pretty constant burning, pins & needles, itching, bug crawling, random stabbing which occasionally includes my head. I have late night twitching- fasciculations in my legs that really disrupt my sleep at night. They are often more of a problem then the burning. I started researching and initially thought I had Restless Leg Syndrome. I began medicating most nights with Ambien, Xanax and or Ativan. Prior to this I had never taken anything except Ambien for sleep when needed.

I gave in and went to see a Neurologist in May and have been given a diagnosis of Idiopathic Peripheral Neuropathy after a Nerve Conduction Study which showed Neuropathy in my feet, MRI of my lumbar spine which showed issues I've had for years and some very basic blood tests to rule out some of the autoimmune diseases. (There are so many!!) The doctor basically told me that he cannot cure me because he doesn't know what's causing my PN! He will gladly medicate my symptoms but that's it. From researching my symptoms it looks like I have both Motor and Sensory Neuropathy. Does that make sense and does anyone out there have both forms? In addition, I am very troubled by a shaking I got in my arms when I tried to work out my upper body with 3 lb weights. This also happened in my legs when I was taking my regular Pilates class. Some say it's from not working out as I stopped most of the things I was doing to try and figure out the cause, but I know my body and that is not what's going on.

I went to another doctor out of network and she ordered more tests (ANA, CRP-HS, TPO and numerous vitamins and some heavy metals) I do not have those results yet. I tested negative for Lymes Disease. I have an appointment with a PN specialist in September and I hope and pray we can get further then my original doctor was willing to go.

I have started taking a low dosage of gabapentin 2 hrs before bed. It works some nights and some night not. I realize I'm going to need to up my dose but it's only been 2 ½ weeks and I'm being overly cautious because I hate that brain fog that comes with these drugs. If any of you take this drug please share the side effects you have experienced. (BTW I just read that Ambien has PN side effects after long term use!)

I worked with a Neuro-muscular PT who told me some of my symptoms did not match up with my diagnosis. She urged me to try some things I love to get more data, so I went to my dance class. A few minutes into the warm up my calf started burning and felt like it weighed 100 lbs.

Life is very difficult as I never know how I’ll feel or if I’ll sleep. I've put off making plans and am afraid to exercise since my dance experience. I try to stay positive but it is so difficult. I worry that unchecked my symptoms will continue to worsen and I can’t imagine how I’ll deal with it.

I am so glad that I have found this group and look forward to your input.

If you were mugged, trauma-induced PN is a possibility.I was in a motor vehicle accident and my symptoms started 4 days later. I also think that if you present with sensory along with motor Neurapathy that is called Polyneurapathy. I would suggest posting in the PN forum and learning the search function available. Four character minimum in search window. I take Ambien and my ears perked up when you spoke of long term negative effects on PN. Prior I only had heard of Statins. Most here adhere to a mantra of excercise to tolerance. Good Luck, Ken in Texas.

[Lara]

Hello pinkynose
Welcome to the NeuroTalk Support Groups~

[DejaVu]

Welcome pinkynose,

Wow! Sounds like you have had many challenges and lot of stress.

Come on by the peripheral neuropathy forum. It's an active forum with lots of information and lots of kind support.

Did you happen to sustain a neck injury in the assault?
A traumatic brain Injury/concussion?

Welcome to the NeuroTalk family.
Please make yourself at home here.

To our healing,
DejaVu

[Darlene]

Hello and welcome, happy to see you have come to be with us, it a great place to be. As you can see we have a great number and caring fellow members here, where you have find a supportive and relaxing place. Have fun looking into the different forums. Our shoulders are here for support in many ways.

Please keep us up to date on your condition. Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

Darlene

[pinkynose]

Originally Posted by DejaVu

Welcome pinkynose,

Wow! Sounds like you have had many challenges and lot of stress.

Come on by the peripheral neuropathy forum. It's an active forum with lots of information and lots of kind support.

Did you happen to sustain a neck injury in the assault?
A traumatic brain Injury/concussion?

Welcome to the NeuroTalk family.
Please make yourself at home here.

To our healing,
DejaVu

Thanks DejaVu. I didn't sustain any neck or a concussion. It was quite a bit before the symptoms started. It was the beginning of a stressful year.

[Marie33]

[QUOTE=pinkynose;1157322]Thanks DejaVu. I didn't sustain any neck or a concussion. It was quite a bit before the symptoms started. It was the beginning of a stressful year.


Sorry to hear about your diagnosis of PN Pinky. My Idiopathic- small fiber neuropathy also started after a stressful couple of years. I often wonder if "stress and severe anxiety" could cause a neuropathy. None of the many neurologists I have seen will ever admit to it. I had also just starting going thru menopause when I started having pins and needles in my calves and burning in my feet. I strongly believe there is a link there too.. I am in my mid 50's and I'm sure I will never know the cause of this dreadful disease. What are your thoughts on this?

[mbe41221]

i am disabled since 1997. i always felt alone unyil now. ty

[pinkynose]

Sorry to hear about your diagnosis of PN Pinky. My Idiopathic- small fiber neuropathy also started after a stressful couple of years. I often wonder if "stress and severe anxiety" could cause a neuropathy. None of the many neurologists I have seen will ever admit to it. I had also just starting going thru menopause when I started having pins and needles in my calves and burning in my feet. I strongly believe there is a link there too.. I am in my mid 50's and I'm sure I will never know the cause of this dreadful disease. What are your thoughts on this?[/QUOTE]

Thanks Marie33 for your input. I definitely think stress is a contributing and anxiety are factor. I'm not sure of the menopause link, but it is certainly possible. I'm going to look into it because it's not that long ago that I dealt with menopause and I'll let you know if I find anything. BTW I am going to PM you on some questions you asked in another post. Don't give up on not finding the cause. I'm not.