Intro

[Guest guest]

> Hi

> My name is Kim Weigel, and I had the surgery at Beth Israel on 12/17/99. I

> had originally lost 120 lbs, and have since regained 86 lbs. I am looking to

> start over and improve my life, health and weight. Thanks Kim

Hi Kim,

Welcome. I am kinda new to the group and I believe you will learn a lot here to

help you, I know I have. They are a great group of people.

kathy

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

Open Roux-en-Y

with 150cm Alimentary Limb

07/05/02

416 Highest weight

411/236/150 (hopefully)

[Guest guest]

I thought I would finally introduce myself. I've been lurking for

about a month now. My name is Shelly and I live in Monticello,

Arkansas. I had WLS on September 20, 2002, while we were living in

Alabama. My surgeon was Dr. Les Miles in Birmingham, AL. So far

I've lost 136 pounds. I do bounce around with about 5 pounds but I

keep an eye on my weight, making sure I don't go over that 5

pounds. My weight loss has slowed down a lot, if not completely

stopped. I started out at 317 pounds (at 5'10 " tall) and am down to

181. I'm totally happy where I'm at. I actually got into a size 12

dress the other day (down from a size 26). Anyway, just wanted to

say hello. I've really enjoyed reading everyone's posts and

hopefully I'll get to meet some of you in Seattle.

Shelly

317/181/perfectly happy!

[Guest guest]

What exactly is "dying off"--yeast?Hi ,no-energy and achiness could be die-off symptoms. It seems like people have really different die-off symptoms. Some have terrible D, some have headaches. For me it was EXTREME low energy, mental fog, and terrible crankiness. It lasted about 5 days (during which, like you, my GI symptoms did improve), and then my energy returned and I have felt normal again. In fact, I think I have more energy now on this diet than I did previously, probably because I'm not eating sugar or grains.As many folks on this list will tell you, this is a gradual healing process, and there's lots of up and down at the beginning (and even later, so I hear--I'm still relatively new to this!). Try to stick with it, and do rely on this list--everyone is incredibly supportive!Best wishes,MishaOn Thu, Aug 12, 2010 at 9:39 AM, <ginkgotree12 (AT) gmail (DOT) com> wrote: Hi everyone.I am new to the group, and I have had UC since 2006ish. I have known I was gluten intolerant since about 2000, and obviously I am intolerant to a host of other foods as well.I have struggled ever since. First, I was on meds from the doctor, but then began doing my own research and became terrifiedabout what I heard about the drugs I was taking so I quit (prednasone and asacol). I then went to see a "holistic" doctor who gave me some new drug that helped for a while. Then I came across the book "HealingColitis and Crohn's" (have you all heard of the book?) that advocates a vegan diet, which made me sicker. And then I ate according to "Eat Right for your Blood Type" which helped tremendously. I now go by that book and have been on SCD seriously for about two weeks. My bleeding and diarrhea have stopped, but I have no energy, and I am achy. (When I ate icecreamlast month, it triggered all kinds of systemic problems which I have struggled with in the past which I had no idea what the cause was--iritis, sciatica, depression, etc. I was soooo sick for an entire week,and then I began doing more research and became serious about this diet. So here I am.I lost a relationship because of how sick I was all the time for the last year. But I am on to greener pastures. It has been completely debilitating. I sit here now feeling better than I have in months even though I am extremely low energy.I am going to the gastroenerologist today, and I am nervous. I do not want to go on any meds, but I feel that I need to be in the care of a doctor to test my hemoglobin andto administer the yearly(???) colonoscopy. (ick). Is there anything else I should ask for? Oh, and isn't is strange how people look at you like you are a leper when you say you have food allergies? I think most people think we make it up.I never say I have UC but instead food allergies to not call so much attention to it. But people definitely aren't interested.Thanks.

[Guest guest]

Hey - welcome! What you are feeling is totally normal! I did 5 days of the

intro and felt just awful- but what did I expect after giving up a

caffeine/sugar/carb addiction cold turkey??? So, not only are you probably

feeling those effects, but also the effects of die-off, which Misha explained

pretty well already.

You can have your coffee, but maybe try to ease back into it. Someone suggested

a 50/50 ratio (coffee to water) to me to qualify for " weak coffee. " It was hard

for an espresso drinker like me to do that, but at least I knew I wasn't

unraveling all of the hard work I had started. Do you have any coconut oil? If

you put a little in there with a little honey it is really good! That is the

only thing that got me through having to give up my " normal " coffee.

How did you make your fruit when it made you feel bloated? I was okay with

apples right away, but a lot of people say that pears are easier to digest. You

could try just making a pear sauce (peel them and cut into chunks and then cook

the heck out of them and then puree them). I have been on the diet almost a year

and I still don't eat raw fruit. In fact, I still eat it all pureed! But, it

gets to be more fun as you can tolerate more of a variety- I just made a sauce

with apples, peaches and apricots and it tastes like candy it's so good!

And by the way, your comment made me laugh so hard:

Oh, and isn't is strange how people look at you like you are a leper when you

say you have food allergies? I think most people think we make it up.

I totally know what you mean. When I start to explain what I can and can't eat

when I go out I can see the server's eyes glossing over... Marilyn has created

an awesome " allergy " card that I now send to the cooking staff wherever I go.

It's been a lifesaver!

Well, hang in there. It does get better

-Joanna

SCD 9/2009, Crohn's 1992, 22.5mg Prednisone

[Guest guest]

Hi Marla and Rose,

Thanks for the replies. I'm sorry you guys are sick, but it's nice not to be

alone. I am a couple hours away from Oregon Health Science University, where

I've been referred to the neurology department. They've been sitting on that

referral for several weeks now, not even a phone call (patients can't call

them). OHSU has a sarcoid expert in pulmonology and one in

opthalmology/immunology. At this point I don't have eye or lung issues (except

for chest tightness) and I'm afraid of getting stuck in neuro up there like I've

been stuck in neuro down here - with doctors throwing up their hands and saying

" I don't know. " I suffered for two decades with vulvodynia before this, and I'm

quite sick of doctors looking at me like I'm nuts. (Yes, I do believe the vvd

might be related to this.) My GP, who is very supportive but doesn't do biopsies

himself, agreed with me this week that OHSU would not be the best place to go

for neurosarcoid. He says Oregon doesn't have very many sarcoidosis cases, so

there aren't a lot of experts. We're thinking UCSF - after I can get a biopsy or

something else to indicate that this is what it is. Last week's serum ACE

results aren't in yet. I haven't had a spinal tap, I think a biopsy would be

better. So, I'll try to get the soonest available appt. with an ENT. If it looks

like sarcoidosis I'll call UCSF. If I can get in to OHSU sooner than anywhere

else, I'll do that too, just because I'm desperate. It's getting worse a lot

faster than I can cope with. Thanks.

Janet

>

>

> Janet, where do you live? Are you near a major medical center? Some (not

all) have sarc clinics or doctors interested in sarc. Is it possible to get

another neurology opinion, or better yet, immunology. Immunologists are often

the most knowledgeable about sarc. Have they checked an ACE level? That's not

going to say " yep, it's sarc, " but it's another piece of the puzzle. You sure

sound like a possible candidate for this very exclusive club that nobody wants

to belong to! I'm sorry you are having so many troubling symptoms, but the

improvement in your hands has to be a blessing. This group will provide

support, suggestions, encouragement, tips for dealing with doctors & planning

for appts. Just let us know where you are located, and we may be able to offer

some ideas for evaluation. You are correct in wanting this condition diagnosed

& treated before further damage occurs.

>

> Many doctors think that we are nuts or hypochondriacs because we report so

many seemingly unrelated symptoms. I saw a doctor on TV recently who said that

doctors are either lumpers or splitters. Splitters tend to view each symptom

separately--you may even see a different " ologist " for each symptom. Lumpers

look for a way to connect all or most of the symptoms. You definitely need a

lumper.

>

>

> Ramblin' Rose

> Moderator

>

> A merry heart is good medicine. Proverbs 17:22

>

>

>

>

>

>

>

>

> > To: Neurosarcoidosis

> > From: janetdonnelly42@...

> > Date: Sat, 30 Oct 2010 18:46:26 +0000

> > Subject: intro

> >

> > Hi there,

> >

> > My name is Janet and I think I might be a sarkie. I was 42, fit and healthy

except for mild asthma, when I was hit suddenly last May with what we thought

was carpal tunnel - shooting pains down my right forearm and incredible pain

every time I moved my thumb. Then the left hand started in. I took large doses

of NSAIDs and went to a hand therapist for a few months. But I also had a

horribly painful tennis elbow thing going on, which really threw the diagnosis

for a loop. Then in July my feet got tingly. And my face went numb and tingly on

both sides. And the pain got worse. All tests, including EMG and MRIs, have been

negative for everything except a herniated disc in my neck that isn't bothering

me. (And I have low vit. D, no surprise.) I made my GP do a chest x-ray last

week; that was negative as well. Ditto for eye exam. Lately I've been waiting on

a referral to a larger hospital (my local neurologist says " nothing explains my

symptoms " ) and doing a lot of research. New things are freaking me out, like the

purplish-black spots that appear on my palate and the inside of my cheeks, then

disappear. The facial pain, which in the beginning only happened every 2-3 days,

is now almost constant (I do have one good hour in the morning). Lyrica is

helping lots but I just had to increase the dose to stay sane. The " paresthesia "

is no longer " peripheral " - it's up my back and in my butt. Everything is worse

on the left side. I'm on a waiting list to get in to an ENT to get one of the

oral spots biopsied, but since the spots aren't there every day I don't know

when that's going to happen. There aren't a lot of known disorders that cause

bilateral facial pain like this. Peripheral neurosarc makes the most sense.

> >

> > Funny thing is, my hands, which were so painful I couldn't work or cook or

tie my shoes in the beginning, are now much better. I can't knit or spin every

day like I used to, but I can type and work again, which has made the rest of

this stuff much more bearable. I think this partial recovery may have something

to do with the steroid patches the hand therapist used on my thumbs. Funny, as I

write this, I'm noticing small, subcutaneous bumps on the back of my hands. I

guess I have good reason to be paranoid at this point.

> >

> > So, the upshot is, I think I have a rare disease that needs to be treated

pronto before I lose more nerve function, and there are no doctors in this part

of the country (even at the hospital I've been referred to) who know how to

diagnose and treat said rare disease. But I need a diagnosis before I can get

into a specialist who knows what they're doing. SO, the strategy at this point

is to hold a local doctor hostage until I can get a biopsy of my mouth so that

somebody else in another part of the country will take me seriously. Make sense?

> >

> > I would welcome any other ideas! Thanks for being there.

> >

> > J

> >

> >

> >

> >

> > ------------------------------------

> >

> > ~~~~ *** ~~~ *** ~~~ *** ~~~~

> > 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]

Janet, I started with lung, and all I had was I got really short of breath when I was walking, it really wore me out, and being a nurse I was always walking, I had Chest X-ray, neg. pulmonary test normal, then when I couldn't stand anymore and said, hey look I know me and I am really sick here, test me while I'm walking, and they did a pulse ox which measures your O2, and when I walked it dropped down into the 70-80s, normal is in the 90s, and would get so Short of Breath (SOB)

that I couldn't stand up, so my doctor a Pulmonologist finally listened, and put me on Prednisone. And ordered a CT of my lungs, with should small granuloma's in the lining of my lungs, at the oxygen exchange.  He doubted me no more, and I was blessed to go into remission, while needless to say that was 16 years ago, I have progressed to Systemic (all over) and NeuroSarc.

OK I'm rambling, point is, don't ever give up, you have tightness in your chest, that is a symptom of Lung Sarc. so if you can get into to see a Pulmonologist, that's a start, I'd try that.  They tend to be the specialist in this field, I see mine every 3 months, I actually don't even see my Neuro, my Pulm. talks to him at the hospital about me and reports back.  So I am blessed.

But don't wait if even you can get into the Pulm for chest tightness take it, it's a starting point, and your not just sitting around waiting and wondering, and who knows maybe this guy/gal can get you into the Neuro clinic faster if he thinks you need it.

Just a thought.  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 Marla and Rose,

Thanks for the replies. I'm sorry you guys are sick, but it's nice not to be alone. I am a couple hours away from Oregon Health Science University, where I've been referred to the neurology department. They've been sitting on that referral for several weeks now, not even a phone call (patients can't call them). OHSU has a sarcoid expert in pulmonology and one in opthalmology/immunology. At this point I don't have eye or lung issues (except for chest tightness) and I'm afraid of getting stuck in neuro up there like I've been stuck in neuro down here - with doctors throwing up their hands and saying " I don't know. " I suffered for two decades with vulvodynia before this, and I'm quite sick of doctors looking at me like I'm nuts. (Yes, I do believe the vvd might be related to this.) My GP, who is very supportive but doesn't do biopsies himself, agreed with me this week that OHSU would not be the best place to go for neurosarcoid. He says Oregon doesn't have very many sarcoidosis cases, so there aren't a lot of experts. We're thinking UCSF - after I can get a biopsy or something else to indicate that this is what it is. Last week's serum ACE results aren't in yet. I haven't had a spinal tap, I think a biopsy would be better. So, I'll try to get the soonest available appt. with an ENT. If it looks like sarcoidosis I'll call UCSF. If I can get in to OHSU sooner than anywhere else, I'll do that too, just because I'm desperate. It's getting worse a lot faster than I can cope with. Thanks.

Janet

>

>

> Janet, where do you live? Are you near a major medical center? Some (not all) have sarc clinics or doctors interested in sarc. Is it possible to get another neurology opinion, or better yet, immunology. Immunologists are often the most knowledgeable about sarc. Have they checked an ACE level? That's not going to say " yep, it's sarc, " but it's another piece of the puzzle. You sure sound like a possible candidate for this very exclusive club that nobody wants to belong to! I'm sorry you are having so many troubling symptoms, but the improvement in your hands has to be a blessing. This group will provide support, suggestions, encouragement, tips for dealing with doctors & planning for appts. Just let us know where you are located, and we may be able to offer some ideas for evaluation. You are correct in wanting this condition diagnosed & treated before further damage occurs.

>

> Many doctors think that we are nuts or hypochondriacs because we report so many seemingly unrelated symptoms. I saw a doctor on TV recently who said that doctors are either lumpers or splitters. Splitters tend to view each symptom separately--you may even see a different " ologist " for each symptom. Lumpers look for a way to connect all or most of the symptoms. You definitely need a lumper.

>

>

> Ramblin' Rose

> Moderator

>

> A merry heart is good medicine. Proverbs 17:22

>

>

>

>

>

>

>

>

> > To: Neurosarcoidosis

> > From: janetdonnelly42@...

> > Date: Sat, 30 Oct 2010 18:46:26 +0000

> > Subject: intro

> >

> > Hi there,

> >

> > My name is Janet and I think I might be a sarkie. I was 42, fit and healthy except for mild asthma, when I was hit suddenly last May with what we thought was carpal tunnel - shooting pains down my right forearm and incredible pain every time I moved my thumb. Then the left hand started in. I took large doses of NSAIDs and went to a hand therapist for a few months. But I also had a horribly painful tennis elbow thing going on, which really threw the diagnosis for a loop. Then in July my feet got tingly. And my face went numb and tingly on both sides. And the pain got worse. All tests, including EMG and MRIs, have been negative for everything except a herniated disc in my neck that isn't bothering me. (And I have low vit. D, no surprise.) I made my GP do a chest x-ray last week; that was negative as well. Ditto for eye exam. Lately I've been waiting on a referral to a larger hospital (my local neurologist says " nothing explains my symptoms " ) and doing a lot of research. New things are freaking me out, like the purplish-black spots that appear on my palate and the inside of my cheeks, then disappear. The facial pain, which in the beginning only happened every 2-3 days, is now almost constant (I do have one good hour in the morning). Lyrica is helping lots but I just had to increase the dose to stay sane. The " paresthesia " is no longer " peripheral " - it's up my back and in my butt. Everything is worse on the left side. I'm on a waiting list to get in to an ENT to get one of the oral spots biopsied, but since the spots aren't there every day I don't know when that's going to happen. There aren't a lot of known disorders that cause bilateral facial pain like this. Peripheral neurosarc makes the most sense.

> >

> > Funny thing is, my hands, which were so painful I couldn't work or cook or tie my shoes in the beginning, are now much better. I can't knit or spin every day like I used to, but I can type and work again, which has made the rest of this stuff much more bearable. I think this partial recovery may have something to do with the steroid patches the hand therapist used on my thumbs. Funny, as I write this, I'm noticing small, subcutaneous bumps on the back of my hands. I guess I have good reason to be paranoid at this point.

> >

> > So, the upshot is, I think I have a rare disease that needs to be treated pronto before I lose more nerve function, and there are no doctors in this part of the country (even at the hospital I've been referred to) who know how to diagnose and treat said rare disease. But I need a diagnosis before I can get into a specialist who knows what they're doing. SO, the strategy at this point is to hold a local doctor hostage until I can get a biopsy of my mouth so that somebody else in another part of the country will take me seriously. Make sense?

> >

> > I would welcome any other ideas! Thanks for being there.

> >

> > J

> >

> >

> >

> >

> > ------------------------------------

> >

> > ~~~~ *** ~~~ *** ~~~ *** ~~~~

> > 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

> >

> >