Jump to content
RemedySpot.com
Sign in to follow this  
Guest guest

new member

Rate this topic

Recommended Posts

Guest guest

,

I lost 146 lbs the first yr and got down 202 lbs by yr two. Been

stuck there for the last 18 mo, except for a little regain that I

have finally gotten back under control. Started at 364 at 5'6 " and

would like to be around 150/155 for a goal, but really just want to

get into a size 10, no matter what I weigh. Currently in

comfortable 12's. Probably won't happen until I get rid of ALOT of

excess skin! Happy as a lark with where I am and my regained health

and energy! Welcome!

Reba in Auburn, AL

> Hello, I just wanted to introduce myself. I am from FL,

and am 1

> year out as of yesterday. I have lost a total of 145 pounds and

have been

> lurking here, off and on, for quite a while. I started in a

5X/32W and am

> now a misses large/14-16 shirt and misses XL 16/18 pants. While

I'm very

> pleased with how far I've come, I still have about 60 pounds to go

and ever

> since I hit the 9 month mark, it's been really slow going. I have

gone back

> to " protein only " and that made no difference in my weight loss.

I really

> never went too far from straight protein, but had added some

vegtables and

> occasionally a piece of bread here and there, so I've cut those

back. I am

> currently trying to stay focused on my walking, mostly because I

feel so

> much better when I do it. Can anyone who needed to lose 200+

pounds please

> share with me how long it took them to do it and how much they

lost after

> their 1 year mark? Thanks. Anyway, I'm happy to be here, and

finally

> legal!

>

>

> Lap RNY 8/2/02

> Dr. Marema

> 369/224/160

Share this post


Link to post
Share on other sites
Guest guest

Dear Reba,

I hear ya. I am in mostly comfortable 12/s too. I would like to be an 8 or a

10. I am currently hanging around 185 and hope to get to about 145-150 before I

am done, but probably will have to have some excess skin removed to accomplish

that also.

You and I will get there one day I am sure.

Take care

Peachy hugs,

Share this post


Link to post
Share on other sites
Guest guest

That's very true, . I also consider myself very lucky in that

I'll be 4 years out in a few days (8/11), and I've continued to lose

through my third year...30 pounds in year #3 alone. I haven't

changed anything, I just count my blessings.

in NJ

open RNY 8/11/99

306/153/whatever

***********************

>

> Anyway, many people do continue to lose after the one year mark -

so

>

> from Washington

> Lap RNY Sept 2001

> Minus 208.5 pounds

> 333.5/125

> http://www.wworw.com

>

>

Share this post


Link to post
Share on other sites
Guest guest

Hi Ellen Welcome to a wonderful site with wonderful people. I have NS and this group has helped a lot.

My brother-in-law has Liver sarcoid. He has had it for 12 years or more. He watches closely what he eats and drinks. He keeps active as possible and takes a bunch of meds like most of us do. I think his attitude helps him get through this monster thing.

You ask away because the moderators are great. (I get points for saying that. *wink*) You can cry, vent or laugh and we will do it with you.

I am so sorry you had to meet all of us this way but believe me you will loved at this place.

Again welcome and God Bless You.

Merry Christmas to you and yours.

Jackie

new member

hi my name is Ellen, I have sarcoid of the liver and I do know really if I belong among you but I feel afraid,confused, and all alone at this point. I had it for 4 yrs and its gettings worse, I need others like me to help me try to understand and compare notes. please forgive me if i dont belong in this group, I dont know what to .

Share this post


Link to post
Share on other sites
Guest guest

hi ellen i neurosarcoidosis of the spine,brain,and lungs. i just joined

this group about a week ago and the love and response is unbelivable!

they are warm and friendly and already feel like family! sorry you had

to join for this reason to but with help from this support group and

the amount of faith, i belive we can all beat this. happy holidays and

merry christmas to you! your new friend barb.

Share this post


Link to post
Share on other sites
Guest guest

Welcome to the group, Ellen. You have definitely found the group you need for sarcoidosis of any type of the body. Try not to be afraid , there is help out there. You will find a lot of information and support from the group. Feel free to ask any questions you want.

Hope you had a nice Christmas,

Debbie T.

Co-moderator

Subject: new memberTo: Neurosarcoidosis Date: Tuesday, December 23, 2008, 4:40 PM

hi my name is Ellen, I have sarcoid of the liver and I do know really if I belong among you but I feel afraid,confused, and all alone at this point. I had it for 4 yrs and its gettings worse, I need others like me to help me try to understand and compare notes. please forgive me if i dont belong in this group, I dont know what to .

Share this post


Link to post
Share on other sites
Guest guest

HI Eddie,

Welcome to the family. We wish you did not have to be here-- but if this is NS, then you've found a place for alot of great info and sharing.

Ns is bit overwhelming, in that for some, the sarc will resolve itself in a period of years. For others of us, it can become a chronic problem.

Right now, it sounds like your neuro is looking at a possiblity that you have Bells Palsy-- that's the face droop and nystagmus. I hope also that he has checked thyroid issues, along with any other endocrine issues.

High ACE angiotensin converting enzyme is a blood test that shows you have systemic inflammation in your body. It is not specific for sarcoidosis, but is a signal that they should check further. He's done right by ordering a chest xray, as more than 90% of sarcoidosis shows up in the lungs. Sarcoidosis is considered an autoimmune disease, they seem to think that it is virus started, then the body gets the signal to fight off the infection, and it doesn't stop attacking once the virus is gone, so it builds white cell on white cell which calcify and end up as granulomas. Easy way to think of it is to see that this changes the structure of our organs and then the organs don't work correctly.

The medical community doesn't yet know what causes sarcoidosis, and we don't have a cure. So, they treat the inflammation with anti-inflammatories, prednisone and if you need long term treatment, they will use drugs known as DMARD's-- Disease Modifying Anti-Rheumatic Drugs--Imuran, Arava, Azathioprine, methotrexate or Plaquenil or BRM's-- Biological Response Modifiers.--Enbrel, Humira, Remicade and Cellcept. The advantage is that BRM's knock out only a part of the immune system, instead of the your entire immune system.

Most often they start with the standard prednisone, but studies now show that this is just masking the problems-- and creating sometimes more problems with blood sugar, mood issues, weight gain and osteoporosis. So it's not a fix all. Sadly, none of the others are either, but they do a better job with less side effects than the pred.

Your doc will want to start with pred-- it's considered to be the least offensive, and then add or change and try other combinations so that you can continue to function as well as possible.

It's important to pace yourself, as with all inflammatory disease, you run a low grade fever pretty much constantly, and this really wipes you out. It also seems to keep us borderline dehydrated, so keeping your fluid and electrolyte levels as close to normal really helps. You can do this by cutting out the caffeine, the high fructose corn syrups, sodas, and alcohol. Decaf teas, 100% fruit juice, and water become your friends. You'll find you hurt less and have alot less body pain if you make these changes.

Get away from processed, fast foods, and go as natural as possible. Whatever you can do to keep moving, exercise-- keep doing it. With NS it can effect both the central nervous system, as well as the peripheral nervous system. It's the PNS that messes with the extremities, making your muscles and ligaments and joints (we tend to develop a sarcoid-induced arthritis) and if it involves your nerves, then signals can be disrupted to your hands and feet.

Sarcoidosis is not a cake walk, but it's not a death sentence either. It will teach you to listen to your body. If you're tired--rest. If you find you get wiped out with the regime you're on, change what you're doing. Take it easy-- and don't do the macho work out-- take a walk if you're able, but you may find you can't climb the mountain.

In our MESSAGE ARCHIVES as well as the LINKS we have a tremendous amount of information. You are welcome to go to these sections of the group site and you can search by topic-- and print out and share the info with your docs.

You will find that you are going to be teaching them about sarc-- as there is still a tremendous amount of "old school" that still thinks that pred is the only choice and that this will burn itself out in a couple of years. If you have NS-- it probably will need treatment-- so ask they can do a steroid sparing option-- Methotrexate or Plaquenil. Know that these take a few weeks to get to a therapuetic level-- so it will take patience.

Do take care, listen to your body- and know you can ask questions and one of us will get back to you ASAP-- the moderators and owners of the group are sick also, and this is the first year we've all be knocked out at once-- so if it is a day or two, know we will get back to you.

Sincerely,

Tracie

NS Co-owner/moderator

Subject: New memberTo: "Neurosarcoidosis " <Neurosarcoidosis >Date: Wednesday, April 15, 2009, 8:29 PM

Hello folks. My name is Eddie, from Georgia. I am 42 and have suffered from recurring bouts of headaches that have become chronic. Finally, I found a great neurologist who was determined to help me and ran a whole bunch of tests, as usual everything came back normal except that I had a very high angiotensin converting enzyme level. I am having nystagmus as well as a palsy on one side of my face that seems to be getting worse over time. The doc seems convinced that it is sarcoidosis and is re running the blood and has sent me for a chest xray. I am glad it finally has a name but don't know what the future holds. Would love some feedback. God BlessSent from my iPod

Share this post


Link to post
Share on other sites
Guest guest

HI MITCH,

You story is similar to many of us. It sounds like you've got all the classic sarc-induced arthritis, the lymphatic involvement, the etc...

Like you, I was told that I had an 80% chance the spots on my lungs were advanced cancer-- or 20% that it was "just" sarcoidosis. That was 19 yrs ago-- and it's just been in the last year that my sarc has advanced into pulmonary hypertension with cardiac involvement.

The last 5 yrs or so, I've been on Plaquenil, Methotrexate and Remicade (infliximab). The Remicade has done a good job keeping my body and inside the bone pain quiet--- and it has really helped with my cognitive issues. The down side is that I'm exhausted all the time-- but that has more to do with the fact that last year when Calif caught on fire-- we live in the middle of the area that was hit the hardest-- that my lungs couldn't handle 4 months of smoke inhalation- day and night. I ended up with a collapsed lung that wasn't caught on xray until I ended up at 3 different facilities and the final one the angle was just a wee bit different, and we could finally see where it had folded itself back under itself, and was seriously fibrosed and pneumonia was hanging on -- 3 courses of Levaquin, Rocephin and one other antibiotic finally kicked the infection, but the fibrosis is here to stay. They don't want to

inflate it-- they're afraid there is too much damage and we'd get some kind of bacteria floating in my body if we do-- so I use portable oxygen pretty much all the time now.

Sarc's an interesting disease, and the best they can do is treat our symptoms and try to handle the problems that come up as it effects the organs.

As you know, it loves to change the structure of the organs, so they can't do their job. It's all the secondary issues that are the hard part-- and that become life threatening.

What I've found that works best is to make sure I get the rest I need, stay hydrated (it's a mantra, but it works!) == dehydration with an inflammatory disease serious business. IF you don't get enough fluids down, that systemic inflammation causes more pain, your lymph nodes become more toxic, which sends the message to the immune system to send it's warriorers to fight whatever is the problem, and we build granulomas from those cells.. (SEARCH TNF-A and TNF-b in the MESSAGE ARCHIVES) Also, if you have inflammation anywhere, you run a constant low grade fever-- and this takes fluid from your body to try to "cool" you down-- and your electrolytes become inbalanced. This creates more inflammation and pain. So-- it's drop the caffeine, sodas, alcohol, and high fructose corn syrup juices-- and you'll feel a whole lot better. Add decaf teas, 100% juice, water, water, water.

The other thing that really helps is MSM Powder. It's a natural mineral that we should have in our food-- but has been depleted by over planting, and over processed foods. I recommend www.puremsm.com as the site where I get mine. I use 2tbsps 3x day in 1/4 cup water-- and within 10 min the pain is so much better.

There is so much we can share with you, and I'm sure you have ideas and questions for us-- ask away. Do know that the owners- and moderators are also sick with sarc-- so it may be a day or so before we get back to you-- but we will!

Sincerely,

Tracie

NS Co-owner/moderator

To: Neurosarcoidosis Sent: Tuesday, October 27, 2009 4:19:47 PMSubject: New Member

Glad I found you guys. Here's my story (briefly) 8 years ago I lost the use of my right arm (went through all the tests and Docs (you all know the drill) Then the spots in the lungs and yearly tests. Hundreds of appointments. 70% of movement came back in arm but was replaced with pain. Started getting URI several times a year. Three years ago it didn't go away got Cat Scan and was told I had Cancer (same type my Father passed away from the year before) Pet Scan showed over 30 enlarged lymph nodes and lung involvement. . For 3 weeks I was told it was Cancer intill Biopsy came back. Curable Cancer or Incurable AutoImmune disease?? Great choice. Was on high amounts of Neurontin which got rid of pain but gave me Narcolepsy (few years before diagnosed with Sarcoid). Then on 80mg of Prednesone, Methotrexate and Plaquinel after a year and a half went in remission for 6 weeks then it got bad. Pnemonia 4 times in 7 months, Hospitalized with double pneumonia,

plurel effusion, atelectasis and septic (105 fever). Now off almost all pain meds,oxy 30 was the only thing that worked. Trying to get approved for Inflibimix and it's moving into my joints. Pulmonologist says he doesn't know if it's from Sarcoid or meds.Pain is bad, breathing is ok for the moment. Guess I just want to know if anyone has a similar story or components and would like peoples thought and advice. Just knowing there are others would helpThanksmitch sarcoid1203@ aol.com

Share this post


Link to post
Share on other sites
Guest guest

Hello to Mitch. I am NE PA as well. I am the caregiver for my wife who is the Neurosarc sufferer. has brain lesions, which has caused a whole host of issues. We see both a neurologist as well as a rheumatologist. We see a team of doctors at Lehigh Valley Hospital Cedar Crest Campus. I will gladly give you names if you need. I know you will find the answers as well as support from this group, In the short time I have been a member (I found them earlier this summer while seking further information for ) they have been wonderful in providing answers to questions as well as their understanding support. Take care of yourself. MattSubject: Re: New MemberTo: Neurosarcoidosis Date: Wednesday, October 28, 2009, 9:30 AM

Tracie,

I just read two e-mails that I got this am, one from someone who had gained 100 pounds and lost half of it (I gained between 40-50 over the last 3 years) and then the personal one from you. I actually cried both for you, with everything you have gone through but to be honest for me because alot sounds so familiar and I'm afraid of the future but also because I realize I'm not alone. I have not run into many people in NE PA that have Sarcoid and no one that has it to my extent. My Pulmonologist who's supposed to be an "expert" makes me feel like I'm the oddball with my symptoms and the responding to then not responding to the meds and just after 12 hours of reading posts I know I'm not crazy. Thank you and thanks to everyone here for just letting me know there's someone to talk to who will understand me.

Thank you

Mitch

New Member

Glad I found you guys. Here's my story (briefly) 8 years ago I lost the use of my right arm (went through all the tests and Docs (you all know the drill) Then the spots in the lungs and yearly tests. Hundreds of appointments. 70% of movement came back in arm but was replaced with pain. Started getting URI several times a year. Three years ago it didn't go away got Cat Scan and was told I had Cancer (same type my Father passed away from the year before) Pet Scan showed over 30 enlarged lymph nodes and lung involvement. . For 3 weeks I was told it was Cancer intill Biopsy came back. Curable Cancer or Incurable AutoImmune disease?? Great choice. Was on high amounts of Neurontin which got rid of pain but gave me Narcolepsy (few years before diagnosed with Sarcoid). Then on 80mg of Prednesone, Methotrexate and Plaquinel after a year and a half went in remission for 6 weeks then it got bad. Pnemonia 4 times in 7 months, Hospitalized with double pneumonia,

plurel effusion, atelectasis and septic (105 fever). Now off almost all pain meds,oxy 30 was the only thing that worked. Trying to get approved for Inflibimix and it's moving into my joints. Pulmonologist says he doesn't know if it's from Sarcoid or meds.

Pain is bad, breathing is ok for the moment. Guess I just want to know if anyone has a similar story or components and would like peoples thought and advice. Just knowing there are others would help

Thanks

mitch sarcoid1203@ aol.com

Share this post


Link to post
Share on other sites

Join the conversation

You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

Loading...
Sign in to follow this  

×
×
  • Create New...