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Old 01-17-2009, 08:07 AM #11
glenntaj glenntaj is offline
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Default I was going to talk about distinctions--

--among what most doctors consider "acute", "sub-acute", and "chronic" onset, but dahlek beat me to it.

The borders between then are a bit arbitrary, but yes, the major differences are how long does it take to go from no symptoms to major symptoms. In a chronic case, the progression in insidious in that one first starts noticing little things that gradually increase in severity and intensity over months/years; with the other categories the time from "nothing" to full-blown symptoms is much shorter.

And yes, chronic inflammatory demeylinating polyneuropathy (CIDP), has been considered the sub-acute, lingering form of Guillain Barre syndrome by many researchers (though there's some dispute about this). There are some similarities--autoimmune demyelinating attack, infectious prodrome, etc., and, in many people, a relapsing/remitting (flares) characteristic that is somewhat common in autoimmune disorders.

It's very hard to analyze these things at the time they'e going on--one is generally much more worried and concerned about the situation that is ongoing--it's only in retrospect that most can generalize about the timing and appearance of symptoms. It's why many people keep a diary or other written record of how they feel, so they can note the differences day to day, week to week, month to month.
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Old 01-17-2009, 12:07 PM #12
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Default GBS? to chamade

I think only the time will tell us what is it. since there is no test to say if it one onset or something that is very slowly progresse. For meanwhile - I'm trying to be optimistic and do my best to help myself.
Next month I'm going to see a new neurologist here. hope that she will tell me more, but also - there is no cure, but time, good diet and relax.
About twitching - my neuro said that - these are common complains of neuropathy and that this means anything. (So, even if this is not true - what can we do? so I choose to believe him).
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Old 01-17-2009, 12:30 PM #13
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Default diary - to glenntaj

I try to keep a diary of my symptom - but I found that I don't remember what was the "burn" feeling like a year ago in comparision to now. When it burns - it burns.
So as you said - we will know if it progressive kind of neuropathy or stable one - only after a while.

I would like to offer to make somewhere in this forum - some kind of a table with the name, since when the neuropathy, what kind of N. ect. It will help the new here to learn more about the other in this forum.
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Old 01-17-2009, 06:46 PM #14
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I have found that my burning has become more of a deep aching over time. This is all so weird, I guess in 5 years looking back at all this some of us will have a clearer picture of the what is going on. In the meantime I am doing everything i can to eat healthy, stay away from processed foods, take the recommended supplements and get enough sleep.

BTW, does anyone here have scoliosis? I do and I know it is associated with certain nerve disorders sometimes...

Today my hands burn and tingle while the cellphone is going off in my right leg The vibration thingy is the only asymmetric symptoms I have.

Also did anyone experience eye pains with their neuropathy? I did in the beginning and still get it very rarely.
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Old 01-18-2009, 07:15 AM #15
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Default amit--

--these two sites should help regarding classificiation of neuropathy:

http://neuromuscular.wustl.edu/naltbrain.html

This is the Washington University at St. Louis Neuromuscular database--while written for doctors, it is an excellent overview of neurological conditions. The link above is the neuropathy classification page (we also have it in the Useful Websites "stickies") and it breaks down neuropathy type in several dimensions--cause, patttern of onset, anatomical distribution, functional disruption.

http://neuromuscular.wustl.edu/naltbrain.html

This is the classification page of The Neuropathy Association. (A number of us have commented on the inefficiency of the message boards there, but they do have a good informational database on the condition.)
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Old 01-20-2009, 11:00 AM #16
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I have also found over time that in the case of my legs, I have much more of a deep aching, cramping and other funny sensations going on then the initial burning which was my first body symptom. Some of the burning that I do have is very strange as it goes down certain strips or areas of my body. My entire back actually burns the worse these days. Like you, I also have scoliosis...






Quote:
Originally Posted by chamade View Post
I have found that my burning has become more of a deep aching over time. This is all so weird, I guess in 5 years looking back at all this some of us will have a clearer picture of the what is going on. In the meantime I am doing everything i can to eat healthy, stay away from processed foods, take the recommended supplements and get enough sleep.

BTW, does anyone here have scoliosis? I do and I know it is associated with certain nerve disorders sometimes...

Today my hands burn and tingle while the cellphone is going off in my right leg The vibration thingy is the only asymmetric symptoms I have.

Also did anyone experience eye pains with their neuropathy? I did in the beginning and still get it very rarely.
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Old 01-20-2009, 01:25 PM #17
Monica de Lara Monica de Lara is offline
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My neuropathy started on a day when i was extremely stressed out. I ignored for about a month. It was first on my reproductive area then on my tighs, in about a month it had spread to my calves and feet... That was 2.5 years ago.

Something that makes me wonder is that my neuropathy started on the top of my legs not on the feet. Most people get it first on their feet. I wonder if it is related to scoliosis now. I was told i have a slight scoliosis. I also have some lipomas on my low back. I wonder if they're pressing some nerves and that be causing my neuropathy....

Is there a chance the lipomas are causing my neuropathy?
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Old 01-20-2009, 01:37 PM #18
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Quote:
Originally Posted by glenntaj View Post
--these two sites should help regarding classificiation of neuropathy:

http://neuromuscular.wustl.edu/naltbrain.html

This is the Washington University at St. Louis Neuromuscular database--while written for doctors, it is an excellent overview of neurological conditions. The link above is the neuropathy classification page (we also have it in the Useful Websites "stickies") and it breaks down neuropathy type in several dimensions--cause, patttern of onset, anatomical distribution, functional disruption.

http://neuromuscular.wustl.edu/naltbrain.html

This is the classification page of The Neuropathy Association. (A number of us have commented on the inefficiency of the message boards there, but they do have a good informational database on the condition.)
I know these sites. I didn't mean classificatin of neuropathy, but a kind of "member list" of the members in this forom - how old they are, since when we have our neuropathy, what kind of neuropathy - idiopatic, diabetic or other. All this - just in case that we would like to "talk" to people with the same history. This member list can be in a table - some where in the forum - where it will be easy to enter and learn about colegues. (sorry for the English mistakes)
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Old 01-20-2009, 01:54 PM #19
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Originally Posted by Monica de Lara View Post
My neuropathy started on a day when i was extremely stressed out. I ignored for about a month. It was first on my reproductive area then on my tighs, in about a month it had spread to my calves and feet... That was 2.5 years ago.

Something that makes me wonder is that my neuropathy started on the top of my legs not on the feet. Most people get it first on their feet. I wonder if it is related to scoliosis now. I was told i have a slight scoliosis. I also have some lipomas on my low back. I wonder if they're pressing some nerves and that be causing my neuropathy....

Is there a chance the lipomas are causing my neuropathy?
I have a lipoma in the brain corpus callosum, of all places, as discovered on the MRI. The neuro doesn't seem to think anything of it. Yet, can't the body sometimes produce antibodies to fight "cancers" that also affect the nerves? It is called paraneoplastic syndrome and I wonder if it could be related to that.
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Old 01-20-2009, 02:00 PM #20
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Originally Posted by Hope15 View Post
I have also found over time that in the case of my legs, I have much more of a deep aching, cramping and other funny sensations going on then the initial burning which was my first body symptom. Some of the burning that I do have is very strange as it goes down certain strips or areas of my body. My entire back actually burns the worse these days. Like you, I also have scoliosis...
I have cervical scoliosis which could explain my body wide symptoms. Also, it all started after I overdid it with swimming and exercises and I wonder if I tweaked my cervical spine somehow - yet they don't see abnormalities on the MRI.

I see that you're from the SF area too! What doctors did you see for your problems so far?

First I went to the UCSF, now I am seeing someone at the CPMC and just today made an appointment to see someone else at the UCSF again.
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