Update

[Guest guest]

<bonita458@y...> wrote:

> now on to the goooooooooood news.my wls was on april 19.2004.with

> some ups and some downs i have manage to loose a grand total of 83

> pounds.i went from 458lbs to 375lbs(oh happpppppppy day).

That is wonderful news. You must be ecstatic. Did you keep all your

previous clothes? I dread the thought of having to buy new clothes

every few months, but shopping, not eating, will become my new treat!

[Guest guest]

That is wonderful Sherri! Keep up the great work!

in Delaware

Lap RNY 3/10/04

261/178/120

[Guest guest]

Congratulations!!!! It sounds like you have been doing great!!!

Alice hardestyal hardesty@...

Update

Hey everyone. Whats happening? its been a while since i posted but

i have been reading the messages... Its good to see how much

everyone is willing to to help the next person out. Well i had my

surgery on December 16, 2003. while going to the doctor for pre-

surgical consulting i weighed 423lbs, i never knew i weighed that

much until i started going to the doctor... i always thought i was

like 360-370. Anyway, at the time of the surgery i weighed 390lbs.

After surgery, i think the first week was the hardest for me the

pain was terrible... but the pain was more from the scar of being

cut open then from the actual surgery to the stomach. I was walking

around slowly in a couple of days and back to work in about 3

weeks. (the first monday after New Years Eve) I was on light duty

for three months... was on a liquid diet for about 3 weeks, soft

foods for about 3 months then my surgeon just let me go. Once i was

cleared i began going to the gym. I started going to the gym 6 days

a week. light cardio (eliptical machine) and weight lifting (arms,

chest, shoulders, back and legs) I havent started working the

stomach yet. I can eat pretty much anything i want just not as much

as i use to. i dont eat fried foods... (i have had fried chicken

ONCE since the surgery)and i stick to alot of vegetables and meat.

I need high protein since i work out so often so i also drink a

protein shake before i go to the gym. I have experienced dumping

once (apple pie and ice cream) and extreme cramping due to gas once

(drank gingerale to fast)

I must tell you i was always scared of the lifestyle change that i

had to make once i had this surgery, but since the surgery i have

truly embraced the changes that has happened. being able to play

with my son, ride a bike, workout, hell just walk up stairs and not

be winded is such a blessin that at times i just look at what has

happened to me and... well it can be overwhelming.

anyway... I now weigh 245lbs and my doctor said the goal weight is

210lbs which i will try to hit by the end of this year then i will

build myself back up to about 220-230lbs (i have no intentions of

being a little man) this was done for health reasons but getting in

shape is definitely a great benefit. It's good to follow the rules

with this surgery but just remember to be strong and if u fall get

back up. I have made it a lifestyle change but not so strict that i

loose out on what i use to love. I eat things that i am not suppose

to from time to time... i drink alcohol when i go out... but those

few indescretions are balanced out if not dwarfed by the amount of

changes that i have made in my lifestyle. so when u fall, just

remember that there is a path and get back on it.

well thats enough for me... god bless

dee

[Guest guest]

it will go by faster than you expect trust me. i started this process a year

ago and i now over 5 months post-op. i can't believe how the time has gone by.

hang in there. it will all be worth it.

in Delaware

Lap RNY 3/10/04

261/171/120

[Guest guest]

,

It will be here before you know it. In total time from beginning to surgery it

will be 9 months for me. But you know what, looking back at it the time does

not seem so long. I was so busy fighting with insurance that it flew by. Now

my time waiting on my surgery date is flying by too. It will all fall together

before you know it.

Dora in Tennessee

Lap/Open RNY 9/20/2004

Vanderbilt Hospital

[Guest guest]

Wow Crystal, that is wonderful (the weight loss and pregnancy)!!! Please

keep us all posted on your progress, what a joy it will be!

--

Sagel Burns

Lap RNY April 9, 2004 (-80 lbs.)

348/268/140 (begin/current/goal)

carrie@... - www.carrieburns.net

On 9/7/04 8:46 PM, " SouthernAngelsPC@... "

wrote:

> Hi everyone,

> Just a little update on myself. I had Lap RNY on 11/18/03. I am

> currently down 150 pounds and 11 weeks pregnant with TWINS!!! We was totally

> shocked

> to find out we were pregnant to begin with then to find out its TWINS has

> really thrown us for a loop..LOL

> All is well even though I am still loosing weight the docs say its cool.

> They have me eating every hour because i can still eat so little. Hopefully

> we will soon be able to find out the sex of the babies!

> Congrats to everyone on their weight loss and good luck to everyone

> still trying to get the surgery.

> Crystal

> 365/215/165-175 goal

> 11 weeks pregnant with TWINS!!

>

>

>

[Guest guest]

Crystel

Congrats on your weightloss and on your pregnancey as well.WOW twins

thats awsome... You actully had your surgery on my b day LOL . anyways just

wanted to say congrats

Love Debbie

-------------- Original message --------------

Hi everyone,

Just a little update on myself. I had Lap RNY on 11/18/03. I am

currently down 150 pounds and 11 weeks pregnant with TWINS!!! We was totally

shocked

to find out we were pregnant to begin with then to find out its TWINS has

really thrown us for a loop..LOL

All is well even though I am still loosing weight the docs say its cool.

They have me eating every hour because i can still eat so little. Hopefully

we will soon be able to find out the sex of the babies!

Congrats to everyone on their weight loss and good luck to everyone

still trying to get the surgery.

Crystal

365/215/165-175 goal

11 weeks pregnant with TWINS!!

[Guest guest]

Hi,

Congrads on the twins and you weight loss. I too had the surgery 11/13/03

started off at 333 and am 239 now. I have come to a slow down and need some

help on how to jump start the weight loss back up. I don't know if this

happened to you if it did can you please tell me what you did to start it

back up again.

Thanks

Marge

Tobyhanna PA

>From: SouthernAngelsPC@...

>Reply-To: Gastric_Bypass_Family

>To: SouthernAngelsPC@...

>Subject: Update

>Date: Tue, 7 Sep 2004 20:46:37 EDT

>

>Hi everyone,

> Just a little update on myself. I had Lap RNY on 11/18/03. I am

>currently down 150 pounds and 11 weeks pregnant with TWINS!!! We was

>totally shocked

>to find out we were pregnant to begin with then to find out its TWINS has

>really thrown us for a loop..LOL

> All is well even though I am still loosing weight the docs say its

>cool.

>They have me eating every hour because i can still eat so little.

>Hopefully

>we will soon be able to find out the sex of the babies!

> Congrats to everyone on their weight loss and good luck to everyone

>still trying to get the surgery.

>Crystal

>365/215/165-175 goal

>11 weeks pregnant with TWINS!!

>

>

>

[Guest guest]

Congrats!! That is great progress for you. I know that i had a hard

time even when I was down 50 pounds because I still have this big

belly in front. But I know it's because I had a few setbacks and

cannot go to the gym and strength train until this Tuesday. Be very

proud of your accomplishments and know that they will keep coming.

Did the doctor still seem concerned about the legs? It has been

awhile now. I know that mine would tingle very bad to the point of

hurting in the beginning until I was about a month out and then it

just stopped. When I asked him about it, he said it was probably a

pinched nerve from the surgery. I hope you are feeling better soon!!

Tina

> Hello everyone just a post to let you know about me. I doing ok,

> except my thighs still giving me the devil other than that I doing

> good. I am down now at 5 weeks 41 pounds. I was really

disappointed

> when I looked in the mirror today and couldn't tell if I was

losing,

> yes I could feel it in my clothes but I guess I wanted to see it

and

> couldn't so I called my primary doctor and ask if I can come in

and

> be weighed and he said yes so I went this morning stepped on the

> scales and weighed 343 now mind everyone I never could be weighed

> when I went to my doctor because the scales went up to 350 and I

> weighed 384 the first time I never known what I weighed was when I

> went in for my surgery confirmtation with my surgeon and they

> weighed me then. Now I am so proud of myself I am back on regular

> scales.

>

> Oh yeah I was disappointed in that weigh but I know I could lost

> more but there is some days when my thighs hurt and burn so bad so

> all I want to do is stay in the house. But I know I am blessed so

I

> going to take whateva I lose and jump for joy.

>

> 384/353/343/goal is 150

[Guest guest]

Hi Nikki,

I am glad he will be seeing you again on Monday. Please let us know

what you find out when he removes the wires and takes a peek.

Hugs,

Fran

> Hi guys!

>

>

>

> So today I went to see my OS and told him about the hole in the

roof of my

> mouth, is it supposed to be there, etc. He was surprised and told

me that

> there is not supposed to be such a hole. I told him it's not

bothering me,

> it's just is it going to close up or what. He told me he's going

to see me

> again on Monday, and at that time if the hole is still there

(which it will)

> then he will unwire me and take a look see. just wanted to let you

all know.

> It's because of this hole I can't really suck anything through a

straw, etc.

>

>

>

>

> Have a good day!

>

>

>

>

[Guest guest]

, sorry to hear you've been through so much, rest and take care of yourself, they did put you on something to help the ulcers heal?  well thanks for checking in, and take it easy, real easy.

Blessings, Marla .

 

Hey guys, just wanted to let you all know that I've been in the hospital again.. about 3 weeks ago I had a colonoscopy and a EGD ran, I had a couple of polpys removed but everything else seemed normal.. however, I was having horrible pain in my upper R abdomen, I was swollen, sore to the touch, couldn't move,it hurt so bad.. still I was sent home, they thought it was just a gas bubble and that it would all just go away..anyway, 2 weeks later it hadn't gone away but I tried my best to make it go away..with suppositories, laxatives etc.. Mother's day I started passing blood through the bowels, (sorry for the TMI)  so I went to see my regular physician she was pretty excited when she found that it was blood, she talked my GI into scoping me again this time he found 2 bleeding ulcers he said that they were huge.  He told me to go home and if I started having problems to come back and he would admit me.. Well wouldn't you know that when I woke up Saturday morning I couldn't stand up straight, everytime I tried I'd black out.. So back to the hospital I go for 3 days.. but they did get the bleeding to stop.  I've had a lot of pain and soreness in my Right side, but its slowly getting better..  I still have shakes, chills.. I go see my pcp tomorrow..  and I'm not even in a ranting mode.. haha  Anyway, glad to be home.. To all of you guys, take care of yourselves.. Tracie, honey that means you too!

 

Hugs,

teresa

NS Moderator                                                                                                                                                               

[Guest guest]

Matt,

You so amaze me-- while you are having to walk in the fire of 's illness, you hold us in prayer! My friend-- thank you- we are all humbled.

Where is Lehigh and Good Shephard Rehab-- I know many of our members would love to send a card or note--

Please get with the facilities social worker so that you can find out how to get the needed in home caregiver she needs. They should be able to help you co-ordinate this-- and guide you through the channels so that even if your insurance won't cover this-- that you can still make it happen without bankrupting yourself.

My heart goes out to you, and again-- thank you for your graciousness.

Tracie

NS Co-owner/moderator

To: Neuro Sarc <Neurosarcoidosis >Sent: Thu, June 3, 2010 4:32:43 PMSubject: Update

Been off line for several days while I have dealt with the issues stemming from 's illness. On Sat she had a seizure and in an attempt to get out of bed she fell face first into our heavy dresser in the bedroom. Needless to say she broke her nose and badly bruised her face. (She looked like a victim of domestic violence) She was sent to Lehigh Valley Hospital and remained there until yesterday when they sent her to The Good Shepherd Rehab facility. She will be there most likely for a couple weeks. Then I am not sure what they will do. In reality she needs at home care, and I am not sure the insurance comapny will honor it. I am trying to remain positive in the face of it all. I hope that everyone else in the group is doing as well as they can. I will continue to keep you all in my

prayers. Matt

[Guest guest]

Thanks for the good words. The Good Shepherd rehabilitation hospital is in town PA. I know it is a good place, but it is so hard to see jenny there, not knowing if she will be able to come home. I am trying to explore the home health care for her to return home. I have to meet with a lawyer tomorrow morning to start the nasty business of advanced directives and power of attorney etc. I have learned over the years that when I am dealt these bad blows

there is always someone else out there who is way worse off than I. I will always be thankful that I have had my jenny for all these years. 25 this Nov. and I take the good with the bad. I only hope that someday they find a cure to this awful illness so that others do not have to suffer so much. MattSubject: Re: UpdateTo: Neurosarcoidosis Date:

Thursday, June 3, 2010, 8:41 PM

Matt,

You so amaze me-- while you are having to walk in the fire of 's illness, you hold us in prayer! My friend-- thank you- we are all humbled.

Where is Lehigh and Good Shephard Rehab-- I know many of our members would love to send a card or note--

Please get with the facilities social worker so that you can find out how to get the needed in home caregiver she needs. They should be able to help you co-ordinate this-- and guide you through the channels so that even if your insurance won't cover this-- that you can still make it happen without bankrupting yourself.

My heart goes out to you, and again-- thank you for your graciousness.

Tracie

NS Co-owner/moderator

From: D. <dmatt1960 (AT) yahoo (DOT) com>To: Neuro Sarc <Neurosarcoidosis@ yahoogroups. com>Sent: Thu, June 3, 2010 4:32:43 PMSubject: Update

Been off line for several days while I have dealt with the issues stemming from 's illness. On Sat she had a seizure and in an attempt to get out of bed she fell face first into our heavy dresser in the bedroom. Needless to say she broke her nose and badly bruised her face. (She looked like a victim of domestic violence) She was sent to Lehigh Valley Hospital and remained there until yesterday when they sent her to The Good Shepherd Rehab facility. She will be there most likely for a couple weeks. Then I am not sure what they will do. In reality she needs at home care, and I am not sure the insurance comapny will honor it. I am trying to remain positive in the face of it all. I hope that everyone else in the group is doing as well as they can. I will continue to keep you all

in my

prayers. Matt

[Guest guest]

Hi Matt,

Your posts have made it obvious you are a loving, caring person. is as lucky to have you

as you are to have her and I'm sure she knows it. Best wishes to you during a challenging time.

Darrin

To: Neurosarcoidosis From: dmatt1960@...Date: Thu, 3 Jun 2010 18:09:56 -0700Subject: Re: Update

Thanks for the good words. The Good Shepherd rehabilitation hospital is in town PA. I know it is a good place, but it is so hard to see jenny there, not knowing if she will be able to come home. I am trying to explore the home health care for her to return home. I have to meet with a lawyer tomorrow morning to start the nasty business of advanced directives and power of attorney etc.

I have learned over the years that when I am dealt these bad blows there is always someone else out there who is way worse off than I. I will always be thankful that I have had my jenny for all these years. 25 this Nov. and I take the good with the bad. I only hope that someday they find a cure to this awful illness so that others do not have to suffer so much.

Matt

From: tracie feldhaus <tiodaat2001 (AT) yahoo (DOT) com>Subject: Re: UpdateTo: Neurosarcoidosis Date: Thursday, June 3, 2010, 8:41 PM

Matt,

You so amaze me-- while you are having to walk in the fire of 's illness, you hold us in prayer! My friend-- thank you- we are all humbled.

Where is Lehigh and Good Shephard Rehab-- I know many of our members would love to send a card or note--

Please get with the facilities social worker so that you can find out how to get the needed in home caregiver she needs. They should be able to help you co-ordinate this-- and guide you through the channels so that even if your insurance won't cover this-- that you can still make it happen without bankrupting yourself.

My heart goes out to you, and again-- thank you for your graciousness.

Tracie

NS Co-owner/moderator

From: D. <dmatt1960 (AT) yahoo (DOT) com>To: Neuro Sarc <Neurosarcoidosis@ yahoogroups. com>Sent: Thu, June 3, 2010 4:32:43 PMSubject: Update

Been off line for several days while I have dealt with the issues stemming from 's illness. On Sat she had a seizure and in an attempt to get out of bed she fell face first into our heavy dresser in the bedroom. Needless to say she broke her nose and badly bruised her face. (She looked like a victim of domestic violence) She was sent to Lehigh Valley Hospital and remained there until yesterday when they sent her to The Good Shepherd Rehab facility. She will be there most likely for a couple weeks. Then I am not sure what they will do. In reality she needs at home care, and I am not sure the insurance comapny will honor it. I am trying to remain positive in the face of it all. I hope that everyone else in the group is doing as well as they can. I will continue to keep you all in my prayers. Matt

[Guest guest]

Thanks for the good words. Today saw a tiny bit of improvement as she did not argue with me when i left that i was not taking her home with me. I told her she needs to get strong enough to come home. I take it day by day. Everyone be well. Matt

From: tracie feldhaus <tiodaat2001@ yahoo.com>Subject: Re: UpdateTo: Neurosarcoidosis@ yahoogroups. comDate: Thursday, June 3, 2010, 8:41 PM

Matt,

You so amaze me-- while you are having to walk in the fire of 's illness, you hold us in prayer! My friend-- thank you- we are all humbled.

Where is Lehigh and Good Shephard Rehab-- I know many of our members would love to send a card or note--

Please get with the facilities social worker so that you can find out how to get the needed in home caregiver she needs. They should be able to help you co-ordinate this-- and guide you through the channels so that even if your insurance won't cover this-- that you can still make it happen without bankrupting yourself.

My heart goes out to you, and again-- thank you for your graciousness.

Tracie

NS Co-owner/moderator

From: D. <dmatt1960 (AT) yahoo (DOT) com>To: Neuro Sarc <Neurosarcoidosis@ yahoogroups. com>Sent: Thu, June 3, 2010 4:32:43 PMSubject: Update

Been off line for several days while I have dealt with the issues stemming from 's illness. On Sat she had a seizure and in an attempt to get out of bed she fell face first into our heavy dresser in the bedroom. Needless to say she broke her nose and badly bruised her face. (She looked like a victim of domestic violence) She was sent to Lehigh Valley Hospital and remained there until yesterday when they sent her to The Good Shepherd Rehab facility. She will be there most likely for a couple weeks. Then I am not sure what they will do. In reality she needs at home care, and I am not sure the insurance comapny will honor it. I am trying to remain positive in the face of it all. I hope that everyone else in the group is doing as well as they can. I will continue to keep you

all in my prayers. Matt

[Guest guest]

Matt,I am sorry it's been so hard for you two, you're in my prayers.  and I'm glad to hear that   sees she needs to get stronger, if she comes home too soon, she may end up back there, it's such a tough road for the care giver.  You are doing an excellent job, we have had care givers walk away from what you are embarrassing with love, give your self a hug.

Blessings, Marla

 

Thanks for the good words.  Today saw a tiny bit of improvement as she did not argue with me when i left that i was not taking her home with me.  I told her she needs to get strong enough to come home.  I take it day by day.  Everyone be well. 

Matt

From: tracie feldhaus <tiodaat2001@ yahoo.com>Subject: Re: UpdateTo: Neurosarcoidosis@ yahoogroups. comDate: Thursday, June 3, 2010, 8:41 PM

 

Matt,

You so amaze me-- while you are having to walk in the fire of 's illness, you hold us in prayer!  My friend-- thank you- we are all humbled. 

Where is Lehigh and Good Shephard Rehab-- I know many of our members would love to send a card or note--

Please get with the facilities social worker so that you can find out how to get the needed in home caregiver she needs.  They should be able to help you co-ordinate this-- and guide you through the channels so that even if your insurance won't cover this-- that you can still make it happen without bankrupting yourself. 

My heart goes out to you, and again-- thank you for your graciousness.

Tracie

NS Co-owner/moderator

 

From: D. <dmatt1960 (AT) yahoo (DOT) com>To: Neuro Sarc <Neurosarcoidosis@ yahoogroups. com>Sent: Thu, June 3, 2010 4:32:43 PM

Subject: Update 

Been off line for several days while I have dealt with the issues stemming from 's illness.  On Sat she had a seizure and in an attempt to get out of bed she fell face first into our heavy dresser in the bedroom.  Needless to say she broke her nose and badly bruised her face.  (She looked like a victim of domestic violence)  She was sent to Lehigh Valley Hospital and remained there until yesterday when they sent her to The Good Shepherd Rehab facility.  She will be there most likely for a couple weeks.  Then I am not sure what they will do.  In reality she needs at home care, and I am not sure the insurance comapny will honor it. 

I am trying to remain positive in the face of it all.  I hope that everyone else in the group is doing as well as they can.  I will continue to keep you

all in my prayers.  Matt

[Guest guest]

Matt, I'm sorry, it truly never ends, but fight till  you win:)  again your in my prayers. Marla

 

Thanks...Now i begin the insurance fight.  It never seems to end. 

Take carematt

From: tracie feldhaus <tiodaat2001@ yahoo.com>Subject: Re: UpdateTo: Neurosarcoidosis@ yahoogroups. comDate: Thursday, June 3, 2010, 8:41 PM

 

Matt,

You so amaze me-- while you are having to walk in the fire of 's illness, you hold us in prayer!  My friend-- thank you- we are all humbled. 

Where is Lehigh and Good Shephard Rehab-- I know many of our members would love to send a card or note--

Please get with the facilities social worker so that you can find out how to get the needed in home caregiver she needs.  They should be able to help you co-ordinate this-- and guide you through the channels so that even if your insurance won't cover this-- that you can still make it happen without bankrupting yourself. 

My heart goes out to you, and again-- thank you for your graciousness.

Tracie

NS Co-owner/moderator

 

From: D. <dmatt1960 (AT) yahoo (DOT) com>To: Neuro Sarc <Neurosarcoidosis@ yahoogroups. com>Sent: Thu, June 3, 2010 4:32:43 PM

Subject: Update 

Been off line for several days while I have dealt with the issues stemming from 's illness.  On Sat she had a seizure and in an attempt to get out of bed she fell face first into our heavy dresser in the bedroom.  Needless to say she broke her nose and badly bruised her face.  (She looked like a victim of domestic violence)  She was sent to Lehigh Valley Hospital and remained there until yesterday when they sent her to The Good Shepherd Rehab facility.  She will be there most likely for a couple weeks.  Then I am not sure what they will do.  In reality she needs at home care, and I am not sure the insurance comapny will honor it. 

I am trying to remain positive in the face of it all.  I hope that everyone else in the group is doing as well as they can.  I will continue to keep you

all in my prayers.  Matt

[Guest guest]



I have been on Merhotrexate for five years. It is working great for me. I am still on pill form and hope to stay on it as long as I can. If It isn't broke don't fix it.

Jackie

Re: Update

Yes I hope the methotrexate works out well for you. jenny was on that for a few years before they moved her to the Cellcept. We had fairly good results with the methotrexate in pill form and then with the injection form as well. Continue to be well.Matt

I have just had a most successful visit to my specialist. The lymphocyte level has now been reduced to the point where he wants it to be, with the result that the ACE level has dropped. This means that the MTX is now at the correct dosage and things should start to improve. Next visit is slated for September, which is also a good sign. It also means that I won't be going down the Remicade (Infliximab) route either. Good news all round.Best regards,

[Guest guest]

Hi Rose,

Recently,you asked for an update on things. Last Friday, I saw my

neurologist for a checkup. From the results of tests, together with recent

history, we have concluded that the methotrexate is having no effect and so

has been stopped. The changes in the way that I have been feeling are down

solely to the different levels of predisolone that I have been taking.

Presently, it looks as though I need to have a constant baseline of 10mg

per day to bind the sarc monster - or at least keep it at bay. He has

ordered cyclosporine as the next med of choice, starting at 200mg, rising

in a few weeks to 300mgs. I have to watch my blood pressure, so will be

checking that daily to start, then less fequently if all is going according

to plan. I also have to have kidney function tests regularly, which I need

to arrange. So I went to the chemist with my script - and was told the

cost was £498 (around $750). I am trying to sort out a way of working

around that right now. This can be easier in the UK, perhaps, than in the

US. If this doesn't work, it's likely to be Remicade (Infliximab) with all

that that entails.

I hope this has been useful. It certainly brings the story up to date.

God bless,

[Guest guest]

, I take cyclosporine as eye drops (Restasis). Would you be taking it orally or by injection? You said if you couldn't find a way to pay for it, the next choice would be Remicade. Is the $750 for a month's worth? From what I've heard on this list, Remicade is much more expensive than the cyclosporine. I wonder if you are eligible for the needymed.org site in the UK.

Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22

> To: Neurosarcoidosis > Date: Sun, 19 Sep 2010 20:11:03 +0100> Subject: Update> > Hi Rose,> > Recently,you asked for an update on things. Last Friday, I saw my> neurologist for a checkup. From the results of tests, together with recent> history, we have concluded that the methotrexate is having no effect and so> has been stopped. The changes in the way that I have been feeling are down> solely to the different levels of predisolone that I have been taking. > Presently, it looks as though I need to have a constant baseline of 10mg> per day to bind the sarc monster - or at least keep it at bay. He has> ordered cyclosporine as the next med of choice, starting at 200mg, rising> in a few weeks to 300mgs. I have to watch my blood pressure, so will be> checking that daily to start, then less fequently if all is going according> to plan. I also have to have kidney function tests regularly, which I need> to arrange. So I went to the chemist with my script - and was told the> cost was £498 (around $750). I am trying to sort out a way of working> around that right now. This can be easier in the UK, perhaps, than in the> US. If this doesn't work, it's likely to be Remicade (Infliximab) with all> that that entails.> > I hope this has been useful. It certainly brings the story up to date.> God bless,> > > > > ------------------------------------> > ~~~~ *** ~~~ *** ~~~ *** ~~~~> The Neurosarcoidosis Community> > > > Message Archives:-> http://groups.yahoo.com/group/Neurosarcoidosis/messages> > Members Database:-> Listings of locations, phone numbers, and instant messengers.> http://groups.yahoo.com/group/Neurosarcoidosis/database > >

[Guest guest]

Kieth, I am on Remicade and doing well with it, I am also on Plaquanil, and Methotrexate too.  And that combo seems to be helping me, I have not had any bad effects from the Remicade just good.  

Ms 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:)  

 

Hi Rose,

Recently,you asked for an update on things. Last Friday, I saw my

neurologist for a checkup. From the results of tests, together with recent

history, we have concluded that the methotrexate is having no effect and so

has been stopped. The changes in the way that I have been feeling are down

solely to the different levels of predisolone that I have been taking.

Presently, it looks as though I need to have a constant baseline of 10mg

per day to bind the sarc monster - or at least keep it at bay. He has

ordered cyclosporine as the next med of choice, starting at 200mg, rising

in a few weeks to 300mgs. I have to watch my blood pressure, so will be

checking that daily to start, then less fequently if all is going according

to plan. I also have to have kidney function tests regularly, which I need

to arrange. So I went to the chemist with my script - and was told the

cost was £498 (around $750). I am trying to sort out a way of working

around that right now. This can be easier in the UK, perhaps, than in the

US. If this doesn't work, it's likely to be Remicade (Infliximab) with all

that that entails.

I hope this has been useful. It certainly brings the story up to date.

God bless,

[Guest guest]

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]

Just been recently diagnosed. I was a 36 year old healthy and spry young woman and now..... I am currently on 40 mg of prednisone. Still feeling like crap and having joint pain. Not sleeping and shaky. Not sure where to go at this point. I thought that the prednisone was supposed to help with the energy and joint pain. It seems like my body is getting used to the drug and not responding. Does this happen? I cannot seem to get rid of the inflammation in my eyes. I have been on Durazol (steroid eye drops) for several months. Is there anything else that I can do to get rid of the inflammation in my eyes?

To: neurosarcoidosis Sent: Fri, November 26, 2010 7:38:08 PMSubject: RE: Update

Mitch, have you had a neuropsych evaluation? That can often show which areas of the brain are affected, even if no lesions are seen on Mri. Sometimes the symptoms are from inflammation of the blood vessels, which can be intermittent & not visible on MRI.

Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22

To: Neurosarcoidosis From: mjcv29a@...Date: Fri, 26 Nov 2010 18:55:54 -0500Subject: Re: UpdateI'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: UpdateTo: 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]

La, are you seeing an opthalamogist (M.D.) for your eyes? Opticians are fine for routine eye exams, glasses, etc., but you need an MD for this problem. However, not all docs are knowledgeable about sarc treatments. Have you told your doctor that your eyes are not improving? I know that some folks on this list have gotten steroid injections in their eyes (apparently it's not as bad as it sounds). Maybe you need something like that. I recently researched treatment of eye sarc for somebody. I'll have to look for the post, but I'm thinking that the systemic drugs that often help other sarc symptoms don't seem to help the eyes. I'll try to find that info, to be sure. Remind me again of your Pred dosage. Nearly everyone will need something besides the Pred. Most of us take combinations of drugs, but it often takes some experimentation to find the best combo for each person. Imuran & Methotrexate are common drugs given to allow Prednisone doses to be lowered. As with all drugs, there are potential risks & side effects. Some of our members have been unable to take these drugs, and others, because of side effects. I tolerated Imuran well for 2+ years, and Mtx for another 2 years. There are other options; many have had success with Remicade. However, Remicade is very expensive & insurance companies may not cover it unless other options have failed. Also, you need another drug like Mtx with the Remicade to prevent antibody formation. Here is a brief explanation of the drug options as given by one of our co-owners, Tracie:

Pred is great in the short run-- but long term you will need to look at DMARDS-- Disease Modifing AntiRheumatic Drugs: Imuran, Arava, Methotrexate, Plaquenil-- or BRM's-- Biological Response Modifiers: Enbrel, Humira, Cellcept, Remicade.

These are steroid sparing, and what will happen is that as you wean off the pred, you add one med at a time, until you get a combination of what works for you.

For me, it's been the MTX, Plaquenil and Remicade that has been the best combo. MTX helped with cognition and joint pain, Plaquenil helped with lung inflammation and memory, and the Remicade has helped keep the other symptoms under control-- and has taken away the inside the bone pain, along with the spinal arthritis issues. Hope this gives you some ideas to discuss with your docs.

Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22

To: Neurosarcoidosis From: ladyt19119@...Date: Sun, 28 Nov 2010 14:59:26 -0800Subject: Re: Update

Just been recently diagnosed. I was a 36 year old healthy and spry young woman and now..... I am currently on 40 mg of prednisone. Still feeling like crap and having joint pain. Not sleeping and shaky. Not sure where to go at this point. I thought that the prednisone was supposed to help with the energy and joint pain. It seems like my body is getting used to the drug and not responding. Does this happen? I cannot seem to get rid of the inflammation in my eyes. I have been on Durazol (steroid eye drops) for several months. Is there anything else that I can do to get rid of the inflammation in my eyes?

To: neurosarcoidosis Sent: Fri, November 26, 2010 7:38:08 PMSubject: RE: Update Mitch, have you had a neuropsych evaluation? That can often show which areas of the brain are affected, even if no lesions are seen on Mri. Sometimes the symptoms are from inflammation of the blood vessels, which can be intermittent & not visible on MRI.

Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22

To: Neurosarcoidosis From: mjcv29a@...Date: Fri, 26 Nov 2010 18:55:54 -0500Subject: Re: UpdateI'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: UpdateTo: 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