Re: update from neuro visit yesterday.

[Guest guest]

A,

My heart and soul goes out to you girl. I have not been able to drive

for goind on 11 months. I can't even ride my bike my friends locked that away

from. Cause the last time I went riding I ended up in the bushes. But all that

aside I am wishing pain free days and quick remission. Please be careful for

awhile when you go out. Please you are in prayers - like alot new friends I have

found here. please be safe and know I am wishing blessing on you.

with friendship

Greg aka Krumdawg

>

>

> Hello everyone , I hope this finds everyone in a pain free time.

> well my neuro dr showed me my blood tests and my wbc is 1.0 and he is very

worried because of my spinal tap results and now my wbc like that. He said we

are stuck between a rock and a hard place. I have been having blk out spells

along with all the other symtoms and he said he can't increase the immuspresion

drugs at all at this point. He said i need to wear a mask when i go out in

public.

> so today the nurse is coming to start my IV again for steriod IV at home for a

week. than by mouth after that.

> He pulled my licence for 3 months he said with the blk outs he does not want

me driving.

> i have to have a catscan of my chest and another lung function test . He said

the chance of the lesions in the lymph nodes in the chest. I have to have loads

of blood work done again.

> But this is my update, I wish everyone well and pain free days and i will keep

intouch as i can.

> love you all

> Many Blessings A.

>

[Guest guest]

I am so sorry of the flare that you're going through right now. I know how it feels to have your wbc go so low. That happened to me and they immediately pulled off Remicade and Methotrexate. Immunosuppressants can cause low WBC. I hope you will respond to treatments and get well..

Debbie

Subject: update from neuro visit yesterday.To: neurosarcoidosis Date: Tuesday, March 31, 2009, 3:12 PM

Hello everyone , I hope this finds everyone in a pain free time.

well my neuro dr showed me my blood tests and my wbc is 1.0 and he is very worried because of my spinal tap results and now my wbc like that. He said we are stuck between a rock and a hard place. I have been having blk out spells along with all the other symtoms and he said he can't increase the immuspresion drugs at all at this point. He said i need to wear a mask when i go out in public.

so today the nurse is coming to start my IV again for steriod IV at home for a week. than by mouth after that.

He pulled my licence for 3 months he said with the blk outs he does not want me driving.

i have to have a catscan of my chest and another lung function test . He said the chance of the lesions in the lymph nodes in the chest. I have to have loads of blood work done again.

But this is my update, I wish everyone well and pain free days and i will keep intouch as i can.

love you all

Many Blessings A.

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[Guest guest]

,

I am so sorry that you are having such a terrible time. I have had

bouts of optic neuritis and these crazy spacial issues (I don't always

know where I am in space...) so there are times that I don't drive. It

is a real b**ch. Now you will have to let someone help you. You are

always helping everyone else out so you know what you have to do.

I umderstand about the white count too sweetie. My wbc is extremely low

again - but I haven't seen the numbers yet. All I know is that I had to

stop the methotrexate because it is so low. I have had a wbc in the 1.0

range before too when I was on Imuran. My wonderful doctor -at that

time (I am being sarcastic) didn't have me stop it until I complained

that I could barely lift my head off the pillow.

As far as being out in public, be very, very careful. I just go over

pneumonia (?) and it took me a long time to get better. If someone is

sick, ask them not to visit until they are better. If you get someone

to take you shoppping go in off peak hours. I have found early morning

to be the best. This is when the least number of people are in the

stores.

Well, I could go on and on with what I have learned on these two drugs

but I think you get the picture.

Take care and let us know how you do.

Terri G.

>

>

> Hello everyone , I hope this finds everyone in a pain free time.

> well my neuro dr showed me my blood tests and my wbc is 1.0 and he is

very worried because of my spinal tap results and now my wbc like that.

He said we are stuck between a rock and a hard place. I have been having

blk out spells along with all the other symtoms and he said he can't

increase the immuspresion drugs at all at this point. He said i need to

wear a mask when i go out in public.

> so today the nurse is coming to start my IV again for steriod IV at

home for a week. than by mouth after that.

> He pulled my licence for 3 months he said with the blk outs he does

not want me driving.

> i have to have a catscan of my chest and another lung function test .

He said the chance of the lesions in the lymph nodes in the chest. I

have to have loads of blood work done again.

> But this is my update, I wish everyone well and pain free days and i

will keep intouch as i can.

> love you all

> Many Blessings A.

>

[Guest guest]

please be careful and take good care of yourself. You'll be in my prayers and I hope to hear your doing 100% better soon. Remember, Be Kind to -she's a fabulous person"///Connie

Subject: update from neuro visit yesterday.To: neurosarcoidosis Date: Tuesday, March 31, 2009, 3:12 PM

Hello everyone , I hope this finds everyone in a pain free time.

well my neuro dr showed me my blood tests and my wbc is 1.0 and he is very worried because of my spinal tap results and now my wbc like that. He said we are stuck between a rock and a hard place. I have been having blk out spells along with all the other symtoms and he said he can't increase the immuspresion drugs at all at this point. He said i need to wear a mask when i go out in public.

so today the nurse is coming to start my IV again for steriod IV at home for a week. than by mouth after that.

He pulled my licence for 3 months he said with the blk outs he does not want me driving.

i have to have a catscan of my chest and another lung function test . He said the chance of the lesions in the lymph nodes in the chest. I have to have loads of blood work done again.

But this is my update, I wish everyone well and pain free days and i will keep intouch as i can.

love you all

Many Blessings A.

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