numbness

[Guest guest]

I've been experiencing numbness in the lips, tip of tongue, fingers and toes on

and off for the past week or so, and today I started feeling it more in my arms

and legs. It comes and goes, but it's worrisome, and new. I'm wondering if it

could be related to my Crohn's, or perhaps from a pinched nerve since I've been

working at the computer a lot lately. Does anyone else have any experience with

this?

Ellen M

CD 9 yrs, SCD 7 yrs, no meds

[Guest guest]

Ellen,

I agree with Kim. M. here, and consider consulting a neurologist..

I have been having neuro sympotoms intermittently for the past 3 years, with

numbness and tinlging in my lips, face (right side),tongue and hands and arms -

but it came and went.

Once on SCD, I had an episode starting in March 09 - for about 6-8 weeks of

progressively worsening symptoms that you describe, but only on my right side.

Now, it is both right and left in face, fingers, toes, lower extremities - it

moves around in me. Much testing later, it has a name - CIDP - chronic

inflammatory demylinateing polyneuropathy - and basically, the nerves are mostly

intact, but the myelin sheath or fatty coating that covers the nerve and is

responsible for signal transmission between the nerves is progressively

disappearing via an autoiummune response.

There are many causes - chronic lyme, cancer, autoimmune diseases, and in my

case we are still trying to determine the cause.

However, the CIDP itself is a condition that appears to be treatable, and I

expect to begin IV Gamma Globulin profusion therapy in a few more weeks, after a

few more tests to (hopefully) rule out a cancer DX . . .

I also have a nerve in my neck that " pinches " when I get stressed, and it causes

more intense symptoms, but I have learned to differentiate them. The CIDP

symptoms in me are like a humming or buzzing of my nerves in various places

around my body - like the vibration of a vacuum cleaner, alternating with hot

and cold sensations, and prickly + numbing fingers.

If you want more info, feel free to email me off list.

PS - Is this the Ellen who roasts nuts in the crockpot? If so, thanks for that

great trick - I used it last week, and they are simple + delicious . . .

HTH,

Kim

SBS due to bowel re-section

No dx'ed autoimmune disease, but it is clearly happening to me

SCD Jan 09 with my 2 boys

>

> Ellen

>

> I deal with numbness in various parts of my body all the time; some is chronic

and permanent, other areas of numbness are intermittent depending on how I move

or how my metabolism and digestion are working. I've been through a lot of

testing by several neurologists, so that might be your first step.

>

> There are a number of causes for numbness. Pinched nerves are only one of the

possibilities.

>

> I do a lot of computer work. I've had to purchase expensive ergonomic chairs

for home and work to minimize most of the numbness (and pain). I also limit my

sessions of computer work so my shoulders don't freeze up and my arms go numb. I

make sure I get up and move around every 30 minutes. Of course usually my

lumbar pain has kicked in by 30 minutes so I get up more for the back pain then

my numb arms and hands [sigh].

>

> I'd check in with your doctor, perhaps get a referral to a neurologist.

>

> Kim M.

> SCD 5+ years

> Sphincter of Oddi dysfunction 6 years

> neurological deterioration 3 years

>

> >>>>>>>>>>>>>>>>

> I've been experiencing numbness in the lips, tip of tongue, fingers and toes

on and off for the past week or so, and today I started feeling it more in my

arms and legs. It comes and goes, but it's worrisome, and new. I'm wondering if

it could be related to my Crohn's, or perhaps from a pinched nerve since I've

been working at the computer a lot lately. Does anyone else have any experience

with this?

>

> Ellen M

> CD 9 yrs, SCD 7 yrs, no meds

>