Re: Looking for info or Ideas

June 20, 2005

I have ns in my spinal

cord, but didn't in my brain at least thats what my last mri said.

Hi Todd,

I answered some of your questions in the email I sent to you and Bonnie- it also has some excellant sites with different meds they can use.

As far as an MRI confirming you have NS, granulomas or not-- an MRI might show granulomas or problem spots on the brain--but that doesn't necessarily mean it is or isn't sarcoidosis. Unfortunately, we don't have any tests that confirm 100%, unless it's like in your lungs where they can do a bronchoscopy and get a sample of scarred tissues.

Even with muscle biopsies, the chances of them getting the exact spot where there is a granuloma is a long shot. For this same reason, we would never recommend a brain biopsy.

The article at this site is excellant:

http://www.emedicine.com/NEURO/topic649.htm

Also our Link library is quite good, and I'm adding to it often. The address is at the bottom of every email sent out. So, you can just scroll down, highlight it, and copy/paste it to your search window. Hit go, and you're there.

As far as the tearing eyes-- your eyes get very dry with sarcoidosis. If you are having light sensitivity also, get in to see your OPHTHALMOLOGIST immediately. This could be iritis, which can trigger an acute glaucoma attack, and you would lose your vision--and you don't get it back. Make sure you see an MD-OPHTHALMOLOGIST, and not an OD- optometrist. Optometrists are great for eye glasses, and minor eye problems-- but we are in the big leagues now-- and need the MD.

Also, you can use artificial tears as often as you like, you cannot overuse them. It is important to keep the eyes hydrated, or you can end up with problems with the cornea of your eyes, and blurred vision. (The cornea is 80% water, and when dry, can't send clear images to the brain.)

Hope this helps.

Tracie

NS Co-owner/moderator

June 20, 2005

I have ns in my spinal

cord, but didn't in my brain at least thats what my last mri said.

Hi Todd,

I answered some of your questions in the email I sent to you and Bonnie- it also has some excellant sites with different meds they can use.

As far as an MRI confirming you have NS, granulomas or not-- an MRI might show granulomas or problem spots on the brain--but that doesn't necessarily mean it is or isn't sarcoidosis. Unfortunately, we don't have any tests that confirm 100%, unless it's like in your lungs where they can do a bronchoscopy and get a sample of scarred tissues.

Even with muscle biopsies, the chances of them getting the exact spot where there is a granuloma is a long shot. For this same reason, we would never recommend a brain biopsy.

The article at this site is excellant:

http://www.emedicine.com/NEURO/topic649.htm

Also our Link library is quite good, and I'm adding to it often. The address is at the bottom of every email sent out. So, you can just scroll down, highlight it, and copy/paste it to your search window. Hit go, and you're there.

As far as the tearing eyes-- your eyes get very dry with sarcoidosis. If you are having light sensitivity also, get in to see your OPHTHALMOLOGIST immediately. This could be iritis, which can trigger an acute glaucoma attack, and you would lose your vision--and you don't get it back. Make sure you see an MD-OPHTHALMOLOGIST, and not an OD- optometrist. Optometrists are great for eye glasses, and minor eye problems-- but we are in the big leagues now-- and need the MD.

Also, you can use artificial tears as often as you like, you cannot overuse them. It is important to keep the eyes hydrated, or you can end up with problems with the cornea of your eyes, and blurred vision. (The cornea is 80% water, and when dry, can't send clear images to the brain.)

Hope this helps.

Tracie

NS Co-owner/moderator

June 20, 2005

I have ns in my spinal

cord, but didn't in my brain at least thats what my last mri said.

Hi Todd,

I answered some of your questions in the email I sent to you and Bonnie- it also has some excellant sites with different meds they can use.

As far as an MRI confirming you have NS, granulomas or not-- an MRI might show granulomas or problem spots on the brain--but that doesn't necessarily mean it is or isn't sarcoidosis. Unfortunately, we don't have any tests that confirm 100%, unless it's like in your lungs where they can do a bronchoscopy and get a sample of scarred tissues.

Even with muscle biopsies, the chances of them getting the exact spot where there is a granuloma is a long shot. For this same reason, we would never recommend a brain biopsy.

The article at this site is excellant:

http://www.emedicine.com/NEURO/topic649.htm

Also our Link library is quite good, and I'm adding to it often. The address is at the bottom of every email sent out. So, you can just scroll down, highlight it, and copy/paste it to your search window. Hit go, and you're there.

As far as the tearing eyes-- your eyes get very dry with sarcoidosis. If you are having light sensitivity also, get in to see your OPHTHALMOLOGIST immediately. This could be iritis, which can trigger an acute glaucoma attack, and you would lose your vision--and you don't get it back. Make sure you see an MD-OPHTHALMOLOGIST, and not an OD- optometrist. Optometrists are great for eye glasses, and minor eye problems-- but we are in the big leagues now-- and need the MD.

Also, you can use artificial tears as often as you like, you cannot overuse them. It is important to keep the eyes hydrated, or you can end up with problems with the cornea of your eyes, and blurred vision. (The cornea is 80% water, and when dry, can't send clear images to the brain.)

Hope this helps.

Tracie

NS Co-owner/moderator

June 20, 2005

--- rtb2466 rtb2466@...> wrote:

> Hello everyone,

>

> This is Todd, I haven't been to active

> lately with email.

> But I have come across some things lately that have

> been acting up

> with me and wondering if anyone can help. First, I

> seem to become

> more forgetful and have harder time getting what I

> want to say

> across, I have to think about it. Like I find myself

> forgetting to

> take my insulin in the morning, until later. I have

> ns in my spinal

> cord, but didn't in my brain at least thats what my

> last mri said.

> Also I find my eyes feel puffy in the morning and

> they seem to water

> a lot lately I don't know if this is from prednisone

> or the ns? I

> think I must of had this in my heart or around my

> heart also,

> because I sent away for that pamplet on sarcoidosis

> and it talked

> about how you might get paplutations or even were

> your heart like

> stops then takes off again. I had that happen to me

> but just chalked

> it up to being allergic to caffenie now I wonder. I

> haven't had that

> happen since I've been on prednisone, but I have had

> sharp pain in

> my chest lately that comes and goes. My neurologist

> is having me

> start to decrease my prednisone from 60mg every

> otherday to now 30mg

> and I can really feel the difference when I'm on the

> lower dosage.

> My feet and legs and back all hurt and are more numb

> at the lower

> dosage. I almost don't want to continue the

> decrease, but I don't

> really want to be on prednisone either. Its really

> becoming a

> problem with the side effects especially the mood

> swings I have. I

> find I'm taking all my pain and frustration out on

> my kids and wife

> and thats not fair to them. Has anyone used a

> counselor or

> psycologist to help deal with this? I guess I'm

> looking for possible

> different alternatives to meds and ideas to talk to

> my nuerologist

> about when I go and see him next month. Any help

> would be

> appreciated!

>

> Thank You

> Todd

>

> Todd- U may want to consider talking to a counselor

if u find that u are taking your anger out on your

family. a counselor can help u to identfy ways to

realease our anger and frustation so that u dont take

it out on your family. U may also want to look into

family counseling as your family is also under a lot

of stress and they may not really understand y you are

having so much pain and frustration. the counselor can

help all of you to readjust to the fact that u have a

chronic illness. Usually if u think that u need to

talk to a counselor then it is a good idea to look

into it. Most mental health centers have reduced cost

counseling if money is a problem. Also if there is a

University near by that has a counseling program u may

be able to get counseling from students in there last

year of school who are trained counselors who need

counseling hours to get licenced.

Hope that this helps-

__________________________________________________

June 20, 2005

Todd, I just saw Dr. Baughman in Cincinnati last month & he stressed that

MRIs can be negative, despite these problems with memory, disorientation,

etc. I've had a definite worsening of those symptoms in the past year.

Baughman would like me to be on Cytoxan or Remicade, but I don't have any

health insurance because I forgot to pay my COBRA premium! So I'm trying

to find some other insurance. Meanwhile, I'm on Methotrexate, which he

said usually takes 6 months to kick in and might help in the next few

weeks. As far as the heart palpitations, have you had and EKG or

echocardiogram? They don't always reveal cardiac sarc, because granulomas

can be in the muscle wall & not be seen. But it's a start. There is

another test, I think it's a thalium scan, that's more definitive. But

cardiac sarc usually causes arrhythmias, sometimes fatal. So be sure to

tell either your neuro or your PCP & try to get a cardiology consult, not

just the tests.

As you are tapering off the Pred, are you taking any other immune

suppressants, like Imuran or Methotrexate? They help you to lower the dose

of Pred to a safer level and hopefully get off it entirely. The eye thing

I can't help with, except to recommend you see an opthalmalogist (sp?) to

check for sarc-related uveitis. Hope this helps. Rose

Original Message:

-----------------

From: rtb2466 rtb2466@...

Date: Tue, 21 Jun 2005 02:09:19 -0000

To: Neurosarcoidosis

Subject: Looking for info or Ideas

Hello everyone,

This is Todd, I haven't been to active lately with email.

But I have come across some things lately that have been acting up

with me and wondering if anyone can help. First, I seem to become

more forgetful and have harder time getting what I want to say

across, I have to think about it. Like I find myself forgetting to

take my insulin in the morning, until later. I have ns in my spinal

cord, but didn't in my brain at least thats what my last mri said.

Also I find my eyes feel puffy in the morning and they seem to water

a lot lately I don't know if this is from prednisone or the ns? I

think I must of had this in my heart or around my heart also,

because I sent away for that pamplet on sarcoidosis and it talked

about how you might get paplutations or even were your heart like

stops then takes off again. I had that happen to me but just chalked

it up to being allergic to caffenie now I wonder. I haven't had that

happen since I've been on prednisone, but I have had sharp pain in

my chest lately that comes and goes. My neurologist is having me

start to decrease my prednisone from 60mg every otherday to now 30mg

and I can really feel the difference when I'm on the lower dosage.

My feet and legs and back all hurt and are more numb at the lower

dosage. I almost don't want to continue the decrease, but I don't

really want to be on prednisone either. Its really becoming a

problem with the side effects especially the mood swings I have. I

find I'm taking all my pain and frustration out on my kids and wife

and thats not fair to them. Has anyone used a counselor or

psycologist to help deal with this? I guess I'm looking for possible

different alternatives to meds and ideas to talk to my nuerologist

about when I go and see him next month. Any help would be

appreciated!

Thank You

Todd

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June 20, 2005