RE: Need You HELP!

October 17, 2001

vicki

your friend sounds like me! I've had so many days like she describes. The best thing she could do for herself is to go on disability, but she may not feel that is possible.

You mentioned the nerves in my legs. During my worst flair in '98 - '99, I had no reflex response in my left leg and into my foot and very little in my right leg. I could feel my legs only if you touched them or pricked them and could not determine if they were cold or hot, etc. I couldn't move them for several days but I was so sick I don't remember a lot during that hospitalization. I was hospitalized and started on Plasma exchange, IVGg (sp?) and cytoxan. It took many, many months of PT, but now I can walk around inside my house and participate in many daily activities with my family.

I hope your friend gets better. Tell her to remain hopeful and take things slowly. I measure my illness by comparisons over a period of time, not day by day. I may feel good this morning and horrible by afternoon, so its better to ask myself, "During the past month have I had more good days than bad days? Was I able to do more this week?"

It's so discouraging when the doc can't determine what's wrong, but she needs to find just one who won't give up trying to find a dx. Most of us have been there and its wonderful that she has you for a friend. You are an inspiration to us all. Sue

October 17, 2001

Hi Vicki.

I'm afraid I am no help on this. I suppose Epstein-Barr and MS have

been ruled out?

That poor lady has difficulties.

Mike B

> I had a very virulent flu for the months of November, December of

1996

> and into January and February of 1997 I just never fully recovered.

> That's the starting point when I started limping a little and that

got

> worse over the last 4 years, especially the last year. MRI & EMG

tests

> showed that the muscles in my lower legs and feet (especially the

right

> leg & foot) quit working because the nerves are dead.

> They don't know why.

>

> I have constant headaches, chills, fever, night sweats, balance

> problems, intolerance of heat (anything over 70 degrees),

depression,

> irritability, paranoia, extreme weakness and most of all the extreme

> exhaustion and fatigue. It doesn't matter how much rest I get, I

still

> feel lousy. I don't have any social life because the thought is

> overwhelming. I work, go home and am in bed by 6:00 pm. I sleep all

> night and still don't wake up refreshed. I sleep most of the weekend

> away and when I do force myself to do the necessary things (laundry,

> making the bed, sweeping the kitchen, cleaning the bathroom,

changing

> the kitty litter box, watering the yard, etc.) I'm absolutely dead.

I

> have to lay down after each task! Even showering and washing my hair

> seems like an insurmountable task. There has to be something

dreadfully

> wrong with my health to feel this way and I'm going to insist that I

> find out what it is. I think my depression, weight gain and anxiety

are

> symptoms of what is wrong with me and not the cause. Everything is

just

> too overwhelming because I feel so lousy.

>

> ~~~~~~~~~~~~~~~~~~

October 17, 2001

Thanks Mike.... I'm not sure if they've even checked for MS or Epstein

Barr... seems they think she's a hypochondriac. Doesn't that sound all

too familiar?

Hope you had a great day

Vicki

October 17, 2001

Hi Sue... I didn't know if I had it correct or not. What was the

diagnoses of your legs? And, thank you for your kind words...

Vicki

October 17, 2001

Hi Vicki.

Great day? Well, you could easily say busy day. It's 6:35 and I'm

still at the office, struggling frantically to get things done so I

can leave for London on Friday with a clear conscience (well, as

clear a conscience as someone who works in insurance can have).

On the positive side, we got a shipment of Girl Guide cookies at work

today. I don't know if you folks in the poor benighted Southlands get

the chocolatey mint cookies, but if you don't, you are really missing

something. Believe me, it's worth sposoring a Guide Troop just to

ensure a constant supply of these things. As it is, I think I'm going

to be skipping supper tonight -- no more room in my tummy!

Take care.

Mike B

October 17, 2001

We have the Girl Scout Cookies.... they do have a Chocolate Mint one

that's very good. Don't eat to many of them cause you won't be able to

get on the plane....remember... No food on the plane except finger

food... lol

Take care,

Vicki

October 17, 2001

Thanks, Vicki.

By the way, you're right about the finger food. Last week I was

flying home from Newfoundland (about a 3.5 hour trip) and there was

supposed to be supper. However, no knives, forks, or spoons being

allowed meant that supper was a turkey sandwich. I hear that the

difference between me in steerage and the rich folk in first class

was that they got mustard on their turkey!!!

Take care.

Mike B

October 18, 2001

Vicki,

the reference to severe flu symptoms your friend mentions made me

remember that I suffered a very severe bout with flu (or what I thought was

flu...still don't know) just before the symptoms of DM started. In other

words, I never really felt recovered from the flu. I've read that sometimes

a strong virus can cause the onset of DM, and since these autoimmune

diseases all have something in common, and at times overlap, your friend may

be showing signs of autoimmune problems. Other symptoms she describes fit

me: intolerance to temps above 70, extreme fatigue, almost everything except

the headaches and nerve problems. Have they done a muscle biopsy on her?

Annette

Need You HELP!

This is from a very good friend of mine. I'm really worried about her so

I would like imput from all of you as to what you think. Someone on this

list has leg problems due to the nerves... somehow I think it's

Sue...althought I could be wrong. Need to find out what you all think

of this...

~~~~~~~~~~~~

I'm sorry Vickie! I didn't mean to get you worried. It's just that since

I had a very virulent flu for the months of November, December of 1996

and into January and February of 1997 I just never fully recovered.

That's the starting point when I started limping a little and that got

worse over the last 4 years, especially the last year. MRI & EMG tests

showed that the muscles in my lower legs and feet (especially the right

leg & foot) quit working because the nerves are dead.

They don't know why.

I have constant headaches, chills, fever, night sweats, balance

problems, intolerance of heat (anything over 70 degrees), depression,

irritability, paranoia, extreme weakness and most of all the extreme

exhaustion and fatigue. It doesn't matter how much rest I get, I still

feel lousy. I don't have any social life because the thought is

overwhelming. I work, go home and am in bed by 6:00 pm. I sleep all

night and still don't wake up refreshed. I sleep most of the weekend

away and when I do force myself to do the necessary things (laundry,

making the bed, sweeping the kitchen, cleaning the bathroom, changing

the kitty litter box, watering the yard, etc.) I'm absolutely dead. I

have to lay down after each task! Even showering and washing my hair

seems like an insurmountable task. There has to be something dreadfully

wrong with my health to feel this way and I'm going to insist that I

find out what it is. I think my depression, weight gain and anxiety are

symptoms of what is wrong with me and not the cause. Everything is just

too overwhelming because I feel so lousy.

~~~~~~~~~~~~~~~~~~

October 18, 2001

Vicki... MS crossed my mind, too, and also Sjogrens. Annette

Re: Need You HELP!

Hi Vicki.

I'm afraid I am no help on this. I suppose Epstein-Barr and MS have

been ruled out?

That poor lady has difficulties.

Mike B

> I had a very virulent flu for the months of November, December of

1996

> and into January and February of 1997 I just never fully recovered.

> That's the starting point when I started limping a little and that

got

> worse over the last 4 years, especially the last year. MRI & EMG

tests

> showed that the muscles in my lower legs and feet (especially the

right

> leg & foot) quit working because the nerves are dead.

> They don't know why.

>

> I have constant headaches, chills, fever, night sweats, balance

> problems, intolerance of heat (anything over 70 degrees),

depression,

> irritability, paranoia, extreme weakness and most of all the extreme

> exhaustion and fatigue. It doesn't matter how much rest I get, I

still

> feel lousy. I don't have any social life because the thought is

> overwhelming. I work, go home and am in bed by 6:00 pm. I sleep all

> night and still don't wake up refreshed. I sleep most of the weekend

> away and when I do force myself to do the necessary things (laundry,

> making the bed, sweeping the kitchen, cleaning the bathroom,

changing

> the kitty litter box, watering the yard, etc.) I'm absolutely dead.

I

> have to lay down after each task! Even showering and washing my hair

> seems like an insurmountable task. There has to be something

dreadfully

> wrong with my health to feel this way and I'm going to insist that I

> find out what it is. I think my depression, weight gain and anxiety

are

> symptoms of what is wrong with me and not the cause. Everything is

just

> too overwhelming because I feel so lousy.

>

> ~~~~~~~~~~~~~~~~~~

October 18, 2001

Mike.. Those chocolate mint cookies are my all-time favorites! Annette