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Old 08-04-2015, 10:07 PM #1
boiler1993 boiler1993 is offline
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Default Looking for some opinions

So I recently started a new job and since then I have been having more problems and I am wondering if they are neuropathy related or not (or if others have had similar symptoms).

1. The office is cold and I am not sure if this i the cause but when I am sitting at my desk for a period of time one of two things will happen - either I will get a crawling sometimes almost vibrating sensation in my legs that is constantly moving (like in little zaps but not painful just vibrating or crawling) or I will get stinging (almost like the hairs under the skin on my legs are needles trying to get through the surface) - the latter is usually more intermittent.

2. I often wake up in the morning and my feet burn and then usually it worsens when I put my shoes on but eventually dissipates at the office (is it possible heat is causing it?).

3. Today I was in a meeting and I got this very distinct stabbing feeling behind my left knee. It would happen like every 20-30 seconds for about 10 minutes and then stopped all together.

My symptoms have always been sporadic so I never know if they are neuropathy related or just some other occurrence - opinions would be greatly appreciated.
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Old 08-05-2015, 12:25 PM #2
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Quote:
Originally Posted by boiler1993 View Post
So I recently started a new job and since then I have been having more problems and I am wondering if they are neuropathy related or not (or if others have had similar symptoms).

1. The office is cold and I am not sure if this i the cause but when I am sitting at my desk for a period of time one of two things will happen - either I will get a crawling sometimes almost vibrating sensation in my legs that is constantly moving (like in little zaps but not painful just vibrating or crawling) or I will get stinging (almost like the hairs under the skin on my legs are needles trying to get through the surface) - the latter is usually more intermittent.

2. I often wake up in the morning and my feet burn and then usually it worsens when I put my shoes on but eventually dissipates at the office (is it possible heat is causing it?).

3. Today I was in a meeting and I got this very distinct stabbing feeling behind my left knee. It would happen like every 20-30 seconds for about 10 minutes and then stopped all together.

My symptoms have always been sporadic so I never know if they are neuropathy related or just some other occurrence - opinions would be greatly appreciated.
The symptoms sound like Neuropathy, two or three quick-fire questions. Are you diabetic? Are you post Chemotherapy? Did you make a living up to your elbows in cleaning solvents, paint strippers, toxins? These are just a few of the usual suspects. Good Luck, Ken in Texas.
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Old 08-05-2015, 06:57 PM #3
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The symptoms sound like Neuropathy, two or three quick-fire questions. Are you diabetic? Are you post Chemotherapy? Did you make a living up to your elbows in cleaning solvents, paint strippers, toxins? These are just a few of the usual suspects. Good Luck, Ken in Texas.
The answer to all of these is no. I should have mentioned that I was diagnosed with non-length dependent SFN this past winter (based on an abnormal SGNFD in the thigh and abnormal QSART testing). I am also about a week away from getting results for one of the sodium channel mutations.
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Old 08-08-2015, 11:39 AM #4
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The answer to all of these is no. I should have mentioned that I was diagnosed with non-length dependent SFN this past winter (based on an abnormal SGNFD in the thigh and abnormal QSART testing). I am also about a week away from getting results for one of the sodium channel mutations.
Hi boiler1993,

I am sorry you are experiencing so many symptoms.

You have mentioned the possibility of a sodium channel mutation.
Sodium channel mutations, channelopathies in general, can present in seemingly "odd" ways. I hope the test result on this, either way results turn out, help you to find more relief.

I, too, am going through testing for sodium channelopathies.

I hope you are more comfortable soon.


DejaVu

Last edited by DejaVu; 08-08-2015 at 12:10 PM. Reason: typo
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Old 08-08-2015, 07:35 PM #5
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Ken - Yeah the adrenaline type reaction also makes me wonder what the trigger there is. Like if I do an activity with sprints or short term high exertion when I stop movement I often have a rush of stinging from head to toe...not sure what causes this but could be temperature or adrenaline. Good to know I am not the only one with fluctuating symptoms.

DejaVu – I feel very fortunate because I know that my symptoms do not compare to many people’s on this forum but answers would still be nice as I am only 22 (symptoms started at 19). Good to hear the sodium channel testing might give answers but I also was only tested for 1/3 so we will see. Did you get tested for one or several? I should have the results this week so can post what the results are when I know.

One last thing – I have experienced deep almost like bone pain in one leg a few times. No idea what is causing it but that one is very painful and makes it hard to sleep – could this be neuropathy related or something else?


Thank you guys for all your responses
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Old 08-08-2015, 10:36 PM #6
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Good to know I am not the only one with fluctuating symptoms.

I have experienced deep almost like bone pain in one leg a few times. No idea what is causing it but that one is very painful and makes it hard to sleep – could this be neuropathy related or something else?
I think variability is pretty much the norm with PN. My symptoms started with burning feet, which lasted a year then went away for 7 years. Then started up again, followed by a series of paresthesias. One would start and be prominent for weeks or months, then become sporadic as a different unpleasant sensation would become prominent for a while. I don't think there is any typical or predictable progression with this.

I've been having leg pains for over a year; they begin after I get in bed, and feel like butcher knives stabbing deep into my legs. The location is variable, in one or both legs, sometimes in one place, sometimes moving all around. (Before I started using medical marijuana, I would be unable to sleep, and worthless the next day.) Now my bloodwork shows actual muscle damage and I hope to find out how that is happening after some upcoming neurologic testing.

Last edited by dogwalker; 08-09-2015 at 12:28 AM.
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Old 08-08-2015, 07:41 PM #7
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Hi boiler1993,

I am sorry you are experiencing so many symptoms.

You have mentioned the possibility of a sodium channel mutation.
Sodium channel mutations, channelopathies in general, can present in seemingly "odd" ways. I hope the test result on this, either way results turn out, help you to find more relief.

I, too, am going through testing for sodium channelopathies.

I hope you are more comfortable soon.


DejaVu
what can be done if it is sodium channel problem?
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Old 08-08-2015, 07:45 PM #8
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Healthgirl -
What I have been told is that there are more targeted medications for these channelopathies and also it fairly new research so I would suspect that more focus on medications for these mutations may come in the future.
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Old 08-05-2015, 12:34 PM #9
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Originally Posted by boiler1993 View Post
1. The office is cold and I am not sure if this i the cause but when I am sitting at my desk for a period of time one of two things will happen - either I will get a crawling sometimes almost vibrating sensation in my legs that is constantly moving (like in little zaps but not painful just vibrating or crawling) or I will get stinging (almost like the hairs under the skin on my legs are needles trying to get through the surface) - the latter is usually more intermittent.
I can add a comment on this problem...

I am EXTREMELY sensitive to being cold since developing neuropathy. My symptoms become more pronounced and more widespread. I get these "rushes" in localized areas of my body that are similar to that "chill up and down your spine" feeling.

I do everything I can to stay warm, and my symptoms are better in the warm months than cold. I live in a very hot area of the country now that it's summer, and I ridiculously carry sweaters or jackets anywhere where I might have to spend a prolonged amount of time in cold air conditioning. I learned that after doing everything I could to not shiver in the dentist's chair.
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Old 08-05-2015, 07:00 PM #10
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I can add a comment on this problem...

I am EXTREMELY sensitive to being cold since developing neuropathy. My symptoms become more pronounced and more widespread. I get these "rushes" in localized areas of my body that are similar to that "chill up and down your spine" feeling.

I do everything I can to stay warm, and my symptoms are better in the warm months than cold. I live in a very hot area of the country now that it's summer, and I ridiculously carry sweaters or jackets anywhere where I might have to spend a prolonged amount of time in cold air conditioning. I learned that after doing everything I could to not shiver in the dentist's chair.


I get very cold too but I also think I may actually have bad circulation because my fingers will turn purple sometimes in the office. Have you ever had problems triggered by drinking a cold drink? (when i am in the office and cold already and drink from the water coolers - which are chilled- this often causes the stinging pain). I also sometimes have problems with the heat - except this causes a sensation of water running down my legs. I just never know what things are symptoms because they are such a mish mash of reactions.
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