peripheral neuropathy in lipomatosis

[Guest guest]

Question for anyone, what thoughts on the cause (or help?) for peripheral

neuropathy with mito disorders? Is it just erosion of myelin of unknown

etiology, or are there more specifics? Perhaps " just " poor circulation of

less-than-nourishing blood, leading to some kind of nerve starvation?

I know there's plenty of research re PN with diabetes, and (of course, like

everything with mito) there's perhaps some connection to diabetic and

insulin-based regulatory mechanisms. But glucose is normal in my body, yet I

have severe foot pains. They wax and wane considerably, hour to hour and day to

day, which drives me nuts journaling everything (diet, exercise, sleep, etc.)

and experimenting with various OTC supplements, hoping to uncover some

correlation, so far to no avail. I know I have normal LDL, yet rather high

triglycerides and oddly low HDL. I have EMG/NC and EKG abnormalities, as well as

hepatic steatosis, but I expect those are the result, and not the cause of, the

systemic circulatory abnormalities that probably lead to the PN. Mostly, my PN

is worse when my feet are elevated (or when I'm prone, in bed) or warm (I love

summer, and sandals), and usually just after eating. It's sometimes a

considerable burning sensation, but too often there's also an excruciating sharp

knife-like pain entirely over both soles. I believe this is a typical pattern.

Steve D.

[Guest guest]

Steve

My neurologist and I have discussed neuropathy at length. He says that in

mito, it is caused by the hypersensitivity of the nerves. This is why it

varies. Those with diabetic neuropathy have the same level all the time due

to nerve damage. Of course, you can also have both. Many take Neurotin to

help with the neuropathy. I take Lamictal for my myoclonus which seems to

help with the neuropathy as it calms the nerves. I didn't know before our

discussions that the feeling that water is running down your body, insect

bite feelings, stabbing pains are all usually neuropathy of the

hypersensitive nerve type.

My neuropathy appears worse when relaxing as movement seems to make me less

aware of the pains. I also have swelling which is worse in the morning than

late in the day which is backwards, but makes sense when caused by

dysautonomia. I have had my circulation tested more times than I can count

and it is normal.

laurie

>

> Reply-To:

> Date: Tue, 21 Sep 2004 04:02:27 -0400

> To: >

> Subject: peripheral neuropathy in lipomatosis

>

> Question for anyone, what thoughts on the cause (or help?) for peripheral

> neuropathy with mito disorders? Is it just erosion of myelin of unknown

> etiology, or are there more specifics? Perhaps " just " poor circulation of

> less-than-nourishing blood, leading to some kind of nerve starvation?

>

> I know there's plenty of research re PN with diabetes, and (of course, like

> everything with mito) there's perhaps some connection to diabetic and

> insulin-based regulatory mechanisms. But glucose is normal in my body, yet I

> have severe foot pains. They wax and wane considerably, hour to hour and day

> to day, which drives me nuts journaling everything (diet, exercise, sleep,

> etc.) and experimenting with various OTC supplements, hoping to uncover some

> correlation, so far to no avail. I know I have normal LDL, yet rather high

> triglycerides and oddly low HDL. I have EMG/NC and EKG abnormalities, as well

> as hepatic steatosis, but I expect those are the result, and not the cause of,

> the systemic circulatory abnormalities that probably lead to the PN. Mostly,

> my PN is worse when my feet are elevated (or when I'm prone, in bed) or warm

> (I love summer, and sandals), and usually just after eating. It's sometimes a

> considerable burning sensation, but too often there's also an excruciating

> sharp knife-like pain entirely over both soles. I believe this is a typical

> pattern.

>

> Steve D.

>

>

>

[Guest guest]

Steve

My neurologist and I have discussed neuropathy at length. He says that in

mito, it is caused by the hypersensitivity of the nerves. This is why it

varies. Those with diabetic neuropathy have the same level all the time due

to nerve damage. Of course, you can also have both. Many take Neurotin to

help with the neuropathy. I take Lamictal for my myoclonus which seems to

help with the neuropathy as it calms the nerves. I didn't know before our

discussions that the feeling that water is running down your body, insect

bite feelings, stabbing pains are all usually neuropathy of the

hypersensitive nerve type.

My neuropathy appears worse when relaxing as movement seems to make me less

aware of the pains. I also have swelling which is worse in the morning than

late in the day which is backwards, but makes sense when caused by

dysautonomia. I have had my circulation tested more times than I can count

and it is normal.

laurie

>

> Reply-To:

> Date: Tue, 21 Sep 2004 04:02:27 -0400

> To: >

> Subject: peripheral neuropathy in lipomatosis

>

> Question for anyone, what thoughts on the cause (or help?) for peripheral

> neuropathy with mito disorders? Is it just erosion of myelin of unknown

> etiology, or are there more specifics? Perhaps " just " poor circulation of

> less-than-nourishing blood, leading to some kind of nerve starvation?

>

> I know there's plenty of research re PN with diabetes, and (of course, like

> everything with mito) there's perhaps some connection to diabetic and

> insulin-based regulatory mechanisms. But glucose is normal in my body, yet I

> have severe foot pains. They wax and wane considerably, hour to hour and day

> to day, which drives me nuts journaling everything (diet, exercise, sleep,

> etc.) and experimenting with various OTC supplements, hoping to uncover some

> correlation, so far to no avail. I know I have normal LDL, yet rather high

> triglycerides and oddly low HDL. I have EMG/NC and EKG abnormalities, as well

> as hepatic steatosis, but I expect those are the result, and not the cause of,

> the systemic circulatory abnormalities that probably lead to the PN. Mostly,

> my PN is worse when my feet are elevated (or when I'm prone, in bed) or warm

> (I love summer, and sandals), and usually just after eating. It's sometimes a

> considerable burning sensation, but too often there's also an excruciating

> sharp knife-like pain entirely over both soles. I believe this is a typical

> pattern.

>

> Steve D.

>

>

>

[Guest guest]

Steve, I've had marked improvement in neuropathic pain with Klor Con

EF (potassium bicarbonate) and K Phos Neutral (phosphorus). When I

started the potassium in 1998 my hands burned 24/7 though worst at

night. Feet burned some but hands more. If I used my hands much at

all (even just a little typing) the burning would get much worse. If

I tried to ignore it and keep going the burning extended up my arms

to shoulders, face and scalp. It burned to wash my face or comb my

hair. My shoulders burned like a sunburn when touched. This would

improve with several days of rest.

Within a few days of starting Klor-Con EF in 1998, the burning was

much improved. It was completely gone within a few weeks. After

about a year, the burning gradually came back even with potassium

supplements. By the end of 2002 it was very bad again, particularly

hands. March of this year we started K Phos Neutral and had marked

improvement in burning within a week, though not quite as dramatic

as with potassium. Gradually, the burning improved and is much

milder now, though not gone. Again, activity like typing makes it

worse.

Moral of the story is that getting the right metabolic support for

nerve function has been much more successful for me than trying to

kill the pain with other meds.

Barbara

> Question for anyone, what thoughts on the cause (or help?) for

peripheral neuropathy with mito disorders? Is it just erosion of

myelin of unknown etiology, or are there more specifics?

Perhaps " just " poor circulation of less-than-nourishing blood,

leading to some kind of nerve starvation?

>

> I know there's plenty of research re PN with diabetes, and (of

course, like everything with mito) there's perhaps some connection

to diabetic and insulin-based regulatory mechanisms. But glucose is

normal in my body, yet I have severe foot pains. They wax and wane

considerably, hour to hour and day to day, which drives me nuts

journaling everything (diet, exercise, sleep, etc.) and

experimenting with various OTC supplements, hoping to uncover some

correlation, so far to no avail. I know I have normal LDL, yet

rather high triglycerides and oddly low HDL. I have EMG/NC and EKG

abnormalities, as well as hepatic steatosis, but I expect those are

the result, and not the cause of, the systemic circulatory

abnormalities that probably lead to the PN. Mostly, my PN is worse

when my feet are elevated (or when I'm prone, in bed) or warm (I

love summer, and sandals), and usually just after eating. It's

sometimes a considerable burning sensation, but too often there's

also an excruciating sharp knife-like pain entirely over both soles.

I believe this is a typical pattern.

>

> Steve D.

>

>

>