update

[Guest guest]

HI Everyone,

Well I'm finally on the list to go to the Mayo Clinic, I don't know when that will happen it could be 3 months or longer, but they are going to check me in every location on my body. lol Sounds like fun huh? They are trying to make my apt. with DR, Luthera? Does anyone else in the group see him or is it a her? lol

I am very sick right now, but I know that many of you are having just as many problems or more, so my heart and prayer are with you all. Some days I don't feel like getting out of bed, so please forgive me when I don't get online. I am trying to get my strength back. I'm praying for all of you, Please keep prayers going for and the others who need them the most right now. If you need me call collect. lol Or Just maybe I'll catch you online. lol I'm trying.

Love to you all!

Lu

[Guest guest]

, I'm so glad that you had a great visit with Dr. B. I wish we could

all have her as our doctor.

I think it is great to have things put into prespective for us every once in

a while. We tend to get into a slump every so often.

I'm glad you had a great day and I hope you have another one tomorrow.

I'm thinking of you

hugs

Clauida

[Guest guest]

,

Gish I am glad to hear that the heart valve thing is only moderate and that you don't have to rush into this. Sorry that it is taking so long for the Dr. but at least they will be rested when they get back...well maybe!

Please let us know when you hear! I am so glad you have finally found some great dr.'s!

Lots of love

Glenda

[Guest guest]

,

I'm happy for you that you have a great doctor working on your team

for this. It's great you're able to work with them at Stanford, you

want the best for this!

Take care of yourself and I'm very glad to hear that it isn't as bad

as they originally thought. IT will be nice to get it over with

though, I'll bet!

Take care!

M

[Guest guest]

, my daughter had virus menigitis at age 5. At that time the doc

said they knew very little about it but did know it could not be treat the

same as spinal m. I'm sure they know a lot regarding treatment by now.

Please let us know when you can. And how are you feeling?

Love and Prayers,

Mom

update

>I only have a minute before I have to leave to go to 's appt with

her

>so I will be short. LOL

>

> went to the dr and she is no better today. He gave her stonger

>antibiotics, pain pills, decongestant and nasal spray. She is to go back

>tomorrow at 9am. (same time as my dentist appt) of course.!

>

>she is so weak, but she isn't dehydrated. That's a good thing. If she is

no

>better tomorrow, they will probbly put her in the hospital. He gave her

that

>choice today and she wouldn't go. She wanted to go to work tomorrow.

>Sure... she can't even stand up. They are thinking it is a viral infection

>and maybe even viral meningitis. I will up date you after I get home from

>both drs. with .

>

>Thanks everyone for all you do.

>

>Hope I'm home by 6pm. LOL

>

>hugs

>

>

>

>DISCLAIMER!!

>WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS

RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR

BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR

PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND

TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU

>

>

[Guest guest]

Yippee is right! Hope they continue to get better

every day.

I received the brochures that Heidi sent out and am

going out to do some distributing this morning. Then

I'll come home and paint myself silly.

Take care! Love, squeek

BTW, the brochures are terrific! Something we can all

be proud to pass out.

--- RCColloran@... wrote:

> Yippee!! Seems like everything is looking up. The

> girls are feeling much

> better today. AND it's about time. lOL Seems like

> the pred really helped

> . The dr ran a lot of lab work on Thurs and

> some of it was immune

> stuff. She's the one that always gets red ears.

> Not swollen or hurting,

> just red.

>

> At least I don't have to worry so much and that

> makes me feel much better.

>

> I hope you all have a great weekend. I'm gonna

> paint, paint, paint. LOL

>

> I love you all and thank you for all your concerns

> and prayers. They really

> work.

>

> hugs

>

>

=====

__________________________________________________

[Guest guest]

,

I am so happy to hear you are doing so well. Glad to hear your cardiologist is taking good care of you. Hope you can keep him.

As always, keeping you in my prayers.

Love,

Sandy

Hi everyone, just wanted to give you a weekly update. I'm doing GREAT!!! Last night I actually slept all night without any pain meds. Yippee!! So I am healing well. I went to the cardiologist (my local one) yesterday and had a wonderful report. He is going to start taking care of my coumadin levels since my PCP can't seem to find the time to call me with them. LOL I am healing very nicely and am right on track and maybe even ahead of the game. Stanford called me yesterday before my appt and made me feel like I wasn't doing well and that I wasn't trying hard enough. They wanted me to be walking 30 minutes 3 times a day. Well, I didn't to that before. LOL I was feeling guilty and kind of down. My cardiologist told me to throw the guilt away and not let ANYONE make me feel guilty. He told me I have gotten where I am today by my fighting attitude and doing things my way. To keep up doing things my way and do it at my own speed. He told me it will be a good 6 months to heal from this surgery completely and that I am doing better than most. He also told me I could eat more foods. YEAH... and not be on such a strict salt free diet. I didn't need to be on one that strict. That made my day. He is going to do anothere echocadiogram on the 9th and then do a stress test so I can get into the cardiac rehab program here. I just hate the thought of losing him. He has been my dr for over 10 years. Oh well, something is bound to work out and I will find a way to keep him. took me to the drug store yesterday and I did a bit of shopping. Boy did that feel good. LOL Yes, I did spend some money. I am going to make an appt to get my hair cut. Gosh I'm a shaggy mess and can't stand it. I still can't do too much but am getting stronger and feeling better daily. I thank you all again for all the thoughts and prayers. They are really working. I hope to be able to increase my computer time daily. You all take care and know that I miss each and everyone of you. Will keep in touch. hugsDISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU

[Guest guest]

I am so glad to hear you are doing so well. You have been in my

thoughts and prayers. Keep up the good work! I hope and pray you continue to

get better and better every day!! Love, Sue Park

Update

> Hi everyone, just wanted to give you a weekly update. I'm doing GREAT!!!

>

> Last night I actually slept all night without any pain meds. Yippee!!

So I

> am healing well.

>

> I went to the cardiologist (my local one) yesterday and had a wonderful

> report. He is going to start taking care of my coumadin levels since my

> PCP can't seem to find the time to call me with them. LOL I am healing

very

> nicely and am right on track and maybe even ahead of the game.

>

> Stanford called me yesterday before my appt and made me feel like I wasn't

> doing well and that I wasn't trying hard enough. They wanted me to be

> walking 30 minutes 3 times a day. Well, I didn't to that before. LOL I

was

> feeling guilty and kind of down. My cardiologist told me to throw the

guilt

> away and not let ANYONE make me feel guilty. He told me I have gotten

where

> I am today by my fighting attitude and doing things my way. To keep up

doing

> things my way and do it at my own speed. He told me it will be a good 6

> months to heal from this surgery completely and that I am doing better

than

> most. He also told me I could eat more foods. YEAH... and not be on such

a

> strict salt free diet. I didn't need to be on one that strict. That made

my

> day.

>

> He is going to do anothere echocadiogram on the 9th and then do a stress

test

> so I can get into the cardiac rehab program here. I just hate the thought

of

> losing him. He has been my dr for over 10 years. Oh well, something is

> bound to work out and I will find a way to keep him.

>

> took me to the drug store yesterday and I did a bit of shopping.

Boy

> did that feel good. LOL Yes, I did spend some money. I am going to make

an

> appt to get my hair cut. Gosh I'm a shaggy mess and can't stand it.

>

> I still can't do too much but am getting stronger and feeling better

daily.

> I thank you all again for all the thoughts and prayers. They are really

> working. I hope to be able to increase my computer time daily.

>

> You all take care and know that I miss each and everyone of you. Will

keep

> in touch.

>

> hugs

>

>

>

> DISCLAIMER!!

> WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS

RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR

BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR

PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND

TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU

>

>

[Guest guest]

I don't know how they treat atelectasis. Did the clinic give you any

indication as to what they plan to do? Please keep us posted. I'll

be thinking of .

Gale

> Hi all,

>

> Just wanted to give you an update on . (She has been being

> treated for pneumonia since April 03). Well we drove to our

> neighboring province today to have seen by another CF Team

> and the consensus there is that she does not have, and does not

> appear to have had pneumonia. The diagnosis is right middle lobe

> atelectasis. Just wondering if anyone else here has experienced

> this and if so, what was the course of treatment.

>

> Thanks

> Tammy (mom to 14y/o wcf)

[Guest guest]

Tammy,

a had it in May of 2002, a collapsed lung(atelectasis), I have

never heard of this in my life.

a was put on Cipro for a month and Tobi, pulmozyme, and the vest

for 20 minutes twice a day. this was the begining of our CF road,

and of course we had the dreaded diagnosis.

I wish you good luck, she has had it for way too long, she needs help

quickly.

Best wishes,

> Hi all,

>

> Just wanted to give you an update on . (She has been being

> treated for pneumonia since April 03). Well we drove to our

> neighboring province today to have seen by another CF Team

> and the consensus there is that she does not have, and does not

> appear to have had pneumonia. The diagnosis is right middle lobe

> atelectasis. Just wondering if anyone else here has experienced

> this and if so, what was the course of treatment.

>

> Thanks

> Tammy (mom to 14y/o wcf)

[Guest guest]

Hi ,

The doc's have decided to give her a course of prednisone since we

have already done the antibiotics/ intense therapy for 8 months now

with no results. She's also started PEP therapy and increased

exercise was advised.

Sounds odd, but we are kind of relieved....before it was " pneumonia "

which was not responding to antibiotics or treatments. We've spent

the past 8 months, worrying and stressing over it, but now that we

know exactly what the problem is, we can address it, treat it and

get on with life!

How is a now? Did the lung reinflate?

Tammy

> > Hi all,

> >

> > Just wanted to give you an update on . (She has been

being

> > treated for pneumonia since April 03). Well we drove to our

> > neighboring province today to have seen by another CF

Team

> > and the consensus there is that she does not have, and does not

> > appear to have had pneumonia. The diagnosis is right middle

lobe

> > atelectasis. Just wondering if anyone else here has experienced

> > this and if so, what was the course of treatment.

> >

> > Thanks

> > Tammy (mom to 14y/o wcf)

[Guest guest]

Hi Gale,

Since we had been treating her for pneumonia for 8 months, she's

already had all the antibiotics that she can handle for awhile, so

the doc has decided to try a 10-day course of prednisone which she

will start today, she's also starting PEP therapy in addition to her

regular treatments, increased exercise and he has given her a

Bricanyl (sp?) inhaler to use anytime she feels short of breath

during exercise.

We'll have follow-up x-rays and PFT's again in 3weeks to see if

there are any changes or improvements. I'll have my fingers crossed

until then.

Tammy

> > Hi all,

> >

> > Just wanted to give you an update on . (She has been

being

> > treated for pneumonia since April 03). Well we drove to our

> > neighboring province today to have seen by another CF

Team

> > and the consensus there is that she does not have, and does not

> > appear to have had pneumonia. The diagnosis is right middle

lobe

> > atelectasis. Just wondering if anyone else here has experienced

> > this and if so, what was the course of treatment.

> >

> > Thanks

> > Tammy (mom to 14y/o wcf)

[Guest guest]

It will be a chore for to excerise when she is already short

of breath and not feeling well. I hope that the excerise and

prednisone work quickly for her. Prednisone can cause big mood

swings. Please keep us posted on 's progress.

Gale

> > > Hi all,

> > >

> > > Just wanted to give you an update on . (She has been

> being

> > > treated for pneumonia since April 03). Well we drove to our

> > > neighboring province today to have seen by another CF

> Team

> > > and the consensus there is that she does not have, and does not

> > > appear to have had pneumonia. The diagnosis is right middle

> lobe

> > > atelectasis. Just wondering if anyone else here has

experienced

> > > this and if so, what was the course of treatment.

> > >

> > > Thanks

> > > Tammy (mom to 14y/o wcf)

[Guest guest]

Becky,

I hope that this is just a 24 hour flu and it is gone by the time you

read this email. Get well soon!!!

Gale

> Hey

> I came home for Thanksgiving but the same night I came home Brad

came home

> from work sick with what has ended up being a bad case of the

flu...well I woke

> up this morning and feel like total poop. Im still on IV's ( until

Sunday

> night) but feel just rotten.One minute Im sopping wet the next Im

freezing.

> He either picked it up visiting me in the hospital (its running

rampent

> there) or at work...one of the customers as he says the employees

aren't sick. He

> of course is having a fit b/c he just went back to work after a

yearly tune up

> and is calling out.He told them he'll be back SUnday but the boy

can barely

> move....

> Anyways....we are sick......

>

> Becki

> YOUR FAVORITE LilGooberGirl

> YOUNGLUNG EMAIL SUPPORT LIST

> www.topica.com/lists/younglung

> Pediatric Interstitial Lung Disease Society

> http://groups.yahoo.com/group/InterstitialLung_Kids/

>

>

>

[Guest guest]

Becki,

I hope you are both feeling better soon. Hospitals are germ city.

Update

Hey

I came home for Thanksgiving but the same night I came home Brad came

home

from work sick with what has ended up being a bad case of the flu...well

I woke

up this morning and feel like total poop. Im still on IV's ( until

Sunday

night) but feel just rotten.One minute Im sopping wet the next Im

freezing.

He either picked it up visiting me in the hospital (its running rampent

there) or at work...one of the customers as he says the employees aren't

sick. He

of course is having a fit b/c he just went back to work after a yearly

tune up

and is calling out.He told them he'll be back SUnday but the boy can

barely

move....

Anyways....we are sick......

Becki

YOUR FAVORITE LilGooberGirl

YOUNGLUNG EMAIL SUPPORT LIST

www.topica.com/lists/younglung

Pediatric Interstitial Lung Disease Society

http://groups.yahoo.com/group/InterstitialLung_Kids/

[Guest guest]

Becki,

I hope you and Brad are both feeling better soon.

mom of 5 with CF and one on the way

Update

Hey

I came home for Thanksgiving but the same night I came home Brad came home

from work sick with what has ended up being a bad case of the flu...well I

woke

up this morning and feel like total poop. Im still on IV's ( until Sunday

night) but feel just rotten.One minute Im sopping wet the next Im freezing.

He either picked it up visiting me in the hospital (its running rampent

there) or at work...one of the customers as he says the employees aren't sick.

He

of course is having a fit b/c he just went back to work after a yearly tune up

and is calling out.He told them he'll be back SUnday but the boy can barely

move....

Anyways....we are sick......

Becki

YOUR FAVORITE LilGooberGirl

YOUNGLUNG EMAIL SUPPORT LIST

www.topica.com/lists/younglung

Pediatric Interstitial Lung Disease Society

http://groups.yahoo.com/group/InterstitialLung_Kids/

[Guest guest]

The nausea, on the other hand, is

> unrelenting. I also still have that awful weakness and sick

feeling,

> which is getting worse each day.

I was just in your local ER last night trying to get my

nausea/vomiting under control. Tried Zofran for the first time and

that stuff works a *lot* better than the phenergan I had been taking.

Here is a link if you have not tried it yet, the quick dissolve

tablets are very convinent

http://www.zofran.com/

If you're already doing the full range of antinausea drugs, disregard

And have you ever noticed that New Hanover is really creepy at 3 am?

(<G>)

Margaret-who threw up grape popsickle all over her white shoes!

[Guest guest]

Hi everyone.

Just giving a quick update. No new changes. We have been on the diet for

about 4 or so weeks. The only real thing I notice is chewing. He chews on

the sleeves of his shirt to the point that they are getting wrecked.

He is quite bitey too. Could this be yeast?

He has had some infractions (Halloween) and yesterday got into some rice

puffs (for my daughter). But the chewing has been going on for weeks now

with no promise of ending any time soon.

He is currently on:

L.Acidophilus

Cod Liver oil

Complete Omega (SCD legal)

Mag citrate

MB12 injection (everyday)

FOODS:

almond flour, almond butter, honey, eggs, zuchini, butternut squash, meats,

brocolli, spaghetti squash, apple cider, OJ (SCD legal),

pecans, almonds, coconut (all in cookies).

coconut, olive or safflower oils.

Everything we eat is organic, including all nut flours and meats.

I am thinking of trying goat yogurt (made at home) but he has been casein

free so I am a little hesitant.

Any ideas would be great. I am thinking of starting all over again...with

the intro diet.

Thanks,

Tumpa Reinhardt

To the world you may be one person, to one person you are the

world~Anonymous

[Guest guest]

Patty,

She also mentions coconut. That is very advanced as well. I'd drop that one,

too.

Meleah

update

Hi everyone.

Just giving a quick update. No new changes. We have been on the diet for

about 4 or so weeks. The only real thing I notice is chewing. He chews on

the sleeves of his shirt to the point that they are getting wrecked.

He is quite bitey too. Could this be yeast?

He has had some infractions (Halloween) and yesterday got into some rice

puffs (for my daughter). But the chewing has been going on for weeks now

with no promise of ending any time soon.

He is currently on:

L.Acidophilus

Cod Liver oil

Complete Omega (SCD legal)

Mag citrate

MB12 injection (everyday)

FOODS:

almond flour, almond butter, honey, eggs, zuchini, butternut squash, meats,

brocolli, spaghetti squash, apple cider, OJ (SCD legal),

pecans, almonds, coconut (all in cookies).

coconut, olive or safflower oils.

Everything we eat is organic, including all nut flours and meats.

I am thinking of trying goat yogurt (made at home) but he has been casein

free so I am a little hesitant.

Any ideas would be great. I am thinking of starting all over again...with

the intro diet.

Thanks,

Tumpa Reinhardt

To the world you may be one person, to one person you are the

world~Anonymous

[Guest guest]

> Just giving a quick update. No new changes. We have been on the

diet for

> about 4 or so weeks. The only real thing I notice is chewing. He

chews on

> the sleeves of his shirt to the point that they are getting

wrecked.

> He is quite bitey too. Could this be yeast?

> He has had some infractions (Halloween) and yesterday got into

some rice

> puffs (for my daughter). But the chewing has been going on for

weeks now

> with no promise of ending any time soon.

>

> He is currently on:

> L.Acidophilus

> Cod Liver oil

> Complete Omega (SCD legal)

> Mag citrate

> MB12 injection (everyday)

>

> FOODS:

> almond flour, almond butter, honey, eggs, zuchini, butternut

squash, meats,

> brocolli, spaghetti squash, apple cider, OJ (SCD legal),

> pecans, almonds, coconut (all in cookies).

> coconut, olive or safflower oils.

>

> Everything we eat is organic, including all nut flours and meats.

>

> I am thinking of trying goat yogurt (made at home) but he has been

casein

> free so I am a little hesitant.

>

> Any ideas would be great. I am thinking of starting all over

again...with

> the intro diet.

>

>

Daily mB12 inj? What amount/ratio (neubranders' ?). In addition to

what has been sugggested I'd be interested in hearing how long on

mB12, what his weight is, what his inj hx is (you did not start with

dailies, did you?). No folinic/folapro? mB12 inproves peripheral

nerve damage...and the shortest ones are in the tongue/mouth.

Chewing is not an uncommon s/e in inital stages of mB12 therapy.

Zinc?

-christine

-son glenn, scd+ 2/05

[Guest guest]

First of sorry, I can't seem to snip this message!

Patti,

The chewing had started pre SCD. He actually went through this when we first

started MB12 with Dr. Nubrander 2 years ago. He did the mouthing for 2

months and then boom gone!

I have introduced some advanced foods, good news is ever since I did. My son

who used to go every 5-7 days without bowel movements is now going every day

(formed stools). He is happier, calmer and is doing good at school.

He is more playful with dad and his siblings.

I guess I was focusing on the negative (chewing) rather than the positives.

Infractions are hard to stop when you have other kids in the family, to tell

you the truth though we noticed absolutely no difference after the

infraction. I was ready to start the intro diet again if there was. But we

are doing this as strict as we can be!

We are even doing Christmas here this year so that the foods for Cole will

be SCD compliant.

I will continue on with this diet because it is so healthy...I will limit

his nut and coconut intake until later in the diet. The nuts were chopped

(almond rocca, and snickerdoodles).

I was thinking that the almonds might be the cause of all the biting too. I

was going to remove it from the diet for a week and see if the biting stops,

re introduce and see the effect.

Does anyone know of where I can find hazelnut or pecan flour?

Thanks for all your help!

Tumpa

Re: update

It's very difficult to pinpoint problems with the diet when there has been

infractions with illegals. You're just not going to make much progress

unless you can eliminate these events. I know it's hard... but that's the

truth.

The other thing I see is that he's eating foods that I personally would

consider too advanced for someone at four weeks. Broccoli may be " tolerated "

as far as you know.... but there's no getting around the fact that it is in

a more advanced, more difficult-to-digest food group (cabbage family).

You also list pecans and almonds.... do you mean WHOLE nuts? If so, this

is VERY advanced.

If you're going to restart the diet, I would urge you not to use the above

mentioned advanced foods. And, I would suggest swapping out the nut flour

for nut BUTTER in recipes for cookies, etc.

Also... is the almond butter you're using made from blanched almonds? Or

does it have the little brown flecks in it.... that come from the almond

skins? Just curious.

I would not suggest starting goat yogurt yet. You really need to go back

to square one with the basic diet.... keep up the acidophilus, though.

As far as what's causing the chewing behavior.... is this something that

started before you started SCD? Or after? You list almond flour, almond

butter and almonds in the foods he's eating.... I'm wondering if he could be

bothered by the high salicylate content in almonds? We find that quite a few

of the kids with autism are sensitive to these compounds in almonds.... and

do better on another nut butter/flour.... pecan butter, hazelnut butter,

macadamia butter.

Definitely think about restarting with intro and figuring out a strategy

for 100% strict compliance.

Patti

update

Hi everyone.

Just giving a quick update. No new changes. We have been on the diet for

about 4 or so weeks. The only real thing I notice is chewing. He chews on

the sleeves of his shirt to the point that they are getting wrecked.

He is quite bitey too. Could this be yeast?

He has had some infractions (Halloween) and yesterday got into some rice

puffs (for my daughter). But the chewing has been going on for weeks now

with no promise of ending any time soon.

He is currently on:

L.Acidophilus

Cod Liver oil

Complete Omega (SCD legal)

Mag citrate

MB12 injection (everyday)

FOODS:

almond flour, almond butter, honey, eggs, zuchini, butternut squash,

meats,

brocolli, spaghetti squash, apple cider, OJ (SCD legal),

pecans, almonds, coconut (all in cookies).

coconut, olive or safflower oils.

Everything we eat is organic, including all nut flours and meats.

I am thinking of trying goat yogurt (made at home) but he has been casein

free so I am a little hesitant.

Any ideas would be great. I am thinking of starting all over again...with

the intro diet.

Thanks,

Tumpa Reinhardt

To the world you may be one person, to one person you are the

world~Anonymous

[Guest guest]

My MRI showed NO Sarc too.  However,  my Neurologist, said that the granulomas are so small, they don't always show up, and he pointed out where he believes I have the granulomas due to my symptoms,  in the base of the brain and all down the spine.  Also like Tracie said earlier, it could be vasculitis related to the Sarc.  The hardest part of this Disease is it doesn't scream " Sarcodosis " . 

Just because it's neg. does not mean it's not there.  My Neurologist completely believes I have NeuroSarcodosis.   So don't be down, just educate your docs., that's what many of us have had to do.

Hang in there.  Marla

 

Had mri done. I have stenosis L4-S1 minor disk bulge and hemangioma throughout my thoracic spine. No sarc however.

Sent via BlackBerry by AT & T

[Guest guest]

I used to have a terrible time finding the right word. I would be wanting to say"umbrella" but it would come out "balloon."I still have word retrieval problems but I find they are less severe since I started doing the daily crossword in the paper. Don't ask me how it helps, but it does.Hope your problem improves soon.To:

Neurosarcoidosis Sent: Mon, November 22, 2010 9:17:29 PMSubject: Re: Update

When I started having memory problems, I was put in speech and "something" therapy, the speech one help me, I was told when thinking of a word, try thinking of something like it or sounds like it, even say it out loud, then when/if the word comes to you, you can correct yourself. I find it works about 50% of the time, I do hate it though, the other was occupational therapy, and she help me to organize better, however if you saw my office right now you wouldn't think so:)

I hope this helps some of you. One of my biggest fears was I would get lost, and couldn't remember my way home, and couldn't remember I had a phone to call, once I sat on the sideof the road for 2 hours before I remembered where I was and how to get home, that got better when I was put on Remicade.

I hope you all have a very Blessed Thanksgiving! MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too

is just today:)

Count me in on this one.

I've had memory issue's that I just thought were age related but now I'm not sure at all. After this last month's episode that almost landed me in the Hospital for a week or two. I have been worse then ever. In fact it took me 5 minutes to think of the word "episode" , I had to write the whole thing around it until it came to me (and I'm not even sure if that's the word I wanted but it fit so instead of making myself crazy, I went with it),. Since that month's bout with Sarc (the worst in over a year and a half, I can't think of easy words that I use all the time in every day life. It's actually scaring me a bit.

Mitch

Re: Update

To: Neurosarcoidosis

Date: Sunday, November 21, 2010, 3:55

PM

It is that I believe that chemical exposures , un-approved shots and the infamous PB pill could have contributed or caused my Neurosarcoidosis. So I have applied to the VA as a possible Gulf War illness. All of my symptoms' I can apply to my Neurosarcoidosis lead all the way back to 1991. Extreme headaches, extreme sinus blockage, memory lost, depression, lost of balance , well I could go on but also one of my symptoms is the inability at times to speak, pronounce words. My doctors can not identify one thing or a group of things that have caused this. Heck since 1991 I have been misdiagnosed with Hep – B and or Meningitis at least during the initial test but when the actual test for those were done the were negative. So since the Gulf War I have had a lot of issues that I now know were symptoms of Neuro growing. When I found and identified it , it almost took my life (I had a stoke) and since Aug 2008 I have not been allowed to work. Was it the Golf War that caused it or accelerated my Neurosarcoidosis?? That I think is the real question. Not sure if I could prove either one, so lets see if the VA can disprove one or both..

Greg

[Guest guest]

I'm 49 and trying to figure out if this is the Sarc or getting old. How old is everyone else who's having memory problems? (if you don't mind saying). I'm getting scared because since the last "episode" (I saw the word from below) I had. I have been much worse then ever before. It's actually scaring me. I can't think of simple words and it happens daily. I'm ordering an MRI of my Brain this week because I am petrified that it's the Sarc

Re: Update

To: Neurosarcoidosis

Date: Sunday, November 21, 2010, 3:55

PM

It is that I believe that chemical exposures , un-approved shots and the infamous PB pill could have contributed or caused my Neurosarcoidosis. So I have applied to the VA as a possible Gulf War illness. All of my symptoms' I can apply to my Neurosarcoidosis lead all the way back to 1991. Extreme headaches, extreme sinus blockage, memory lost, depression, lost of balance , well I could go on but also one of my symptoms is the inability at times to speak, pronounce words. My doctors can not identify one thing or a group of things that have caused this. Heck since 1991 I have been misdiagnosed with Hep – B and or Meningitis at least during the initial test but when the actual test for those were done the were negative. So since the Gulf War I have had a lot of issues that I now know were symptoms of Neuro growing. When I found and identified it , it almost took my life (I had a stoke) and since Aug 2008 I have not been allowed to work. Was it the Golf War that caused it or accelerated my Neurosarcoidosis?? That I think is the real question. Not sure if I could prove either one, so lets see if the VA can disprove one or both..

Greg

[Guest guest]

Well I am 46 and I believe that my memory issues are the result of my neurosarcoidodis and also prednisone use. I am at 2 mg and will be off prednisone. May the Lord protect us all and bless all.Greg Sent from my iPhone

I'm 49 and trying to figure out if this is the Sarc or getting old. How old is everyone else who's having memory problems? (if you don't mind saying). I'm getting scared because since the last "episode" (I saw the word from below) I had. I have been much worse then ever before. It's actually scaring me. I can't think of simple words and it happens daily. I'm ordering an MRI of my Brain this week because I am petrified that it's the Sarc

Re: Update

To: Neurosarcoidosis

Date: Sunday, November 21, 2010, 3:55

PM

It is that I believe that chemical exposures , un-approved shots and the infamous PB pill could have contributed or caused my Neurosarcoidosis. So I have applied to the VA as a possible Gulf War illness. All of my symptoms' I can apply to my Neurosarcoidosis lead all the way back to 1991. Extreme headaches, extreme sinus blockage, memory lost, depression, lost of balance , well I could go on but also one of my symptoms is the inability at times to speak, pronounce words. My doctors can not identify one thing or a group of things that have caused this. Heck since 1991 I have been misdiagnosed with Hep – B and or Meningitis at least during the initial test but when the actual test for those were done the were negative. So since the Gulf War I have had a lot of issues that I now know were symptoms of Neuro growing. When I found and identified it , it almost took my life (I had a stoke) and since Aug 2008 I have not been allowed to work. Was it the Golf War that caused it or accelerated my Neurosarcoidosis?? That I think is the real question. Not sure if I could prove either one, so lets see if the VA can disprove one or both..

Greg