Re: My Story

[Guest guest]

Wow Ann,

Your story is very similar to all the struggles my sister has been through. I did not go into as much of the clinical struggles in my story is that more what you are looking for? If so let me know and I will try again. You have been a very brave lady through your journey!

HUGS!

O and crew - Kira, , and Krisalynn Mitochondrial Myopathy-MIDS Maternally Inherited Dysautonomia- NVD ( Nuro Vascular Dystrophy) and dad Enrique

Visit our web page: WWW. caringbridge.org/ca/mitooggo

Help support my sister in her new business at : Come and see what's NEW! http://www.youravon.com/elleenmiller Your AVON representative (Sign in passcode: ElleensAVON if you are signing in for the first time :-)

[Guest guest]

Hi, Pat. Welcome to our family. In many ways, members of this group are closer than our own family members. I'm sorry you had to find us because of our mutual acquaintance with the sarc monster.

We just recently had someone else from the UK contact us, just in the last couple of months I think. At the bottom of each message to the group are a series of links; if you click on Archives it will take you to our message archives. In the search link, type in U.K. and I think you can find some messages. You'll need to enter your Yahoo ID & password. While you are at the website, you can check out the Photos section. It's nice to put a face with the name.

There are many options to taking steroids for years & years. In the Links section are many resources describing other drugs to take in place of Pred, or to at least decrease the dosage & try to lessen the serious complications of long-term steroid use. Where in the U.K. do you live? Also in the Links is this website:

http://www.sarcoidosisonlinesites.com

At the bottom of the opening page is a section for sarcoidosis doctors. If you click that, the next page has USA on the left & international on the right. Go to U.K. near the bottom of the right column & click to see info on doctors. I believe there are 2 listed in London and one in Wales.

I'm impressed with your detailed history. Have you kept records, or just able to remember pretty well? I don't know much about the British system of medical records, but if at all possible, it's a good idea to obtain copies of all your medical records & keep your own file. I've been in nursing since 1969, the last 20 as a nurse-midwife, and I know first-hand that medical records can disappear--accidentally shredded, taken home by clerical staff and doctors (yep; I knew a doctor who carried patients' charts around in his car all the time. Scary, huh?), and mysteries (Twilight Zone, anyone?). Anyway, better get off my soapbox before I fall off & injure myself!

One of the frustrating aspects of sarcoidosis is the wide range of symptoms, the fact that weird symptoms can come & go, in different locations. I doubt that any two patients have identical symptoms. I've also experienced strange skin sensations, including a feeling like cobwebs on my face, which gradually turned into more of a feeling like a tightness around my eyes & cheeks, kind of like a facial mask. Eventually that left, to be replaced by the pain of trigeminal neuralgia on the left. I've had electric shock sensations in my arms, legs & feet; vibrations in my leg & back; numb spots that come & go. And yeah, most doctors just want to change the subject. Tremors, heck; I can't even remember everything. I'd have to go back through all my symptom diaries. Even the best doctors really don't want to talk about all this, probably because they have no idea what to do about it.

So, you will read many stories similar to yours, but with each of our own unique variations. But our emotions & determination to support each other are universal. This is a place for giving & gaining information and support, for venting, crying, whining, cursing, laughing. Again, welcome!

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: My StoryDate: Tue, 10 Apr 2007 15:25:25 -0000

Hi. As a new member I thought you would like to hear something of mystory.I am now 66 years old and in retrospect realise I have had sarcoidosissince I was 32 and possibly before that.When I was 32 I had 2 young children and a busy life but complained offatigue which I was told was natural with the amount I was doing. Ithen dveloped numbness of my face and both thighs. I was investigatedfor MS but was told that was not the cause but noone could say whatwas the cause and as the syptoms subsided investigations stopped.A couple of years later I developed a problem with my breathing and ittook me a considerable time to convince my doctors that it wasn'tasthma. I was eventually sent to the National Chest Hospital whereSarcoidosis was diagnosed but the disease had been active for sometimeand I have permanent scarring in nasal passages,trachea and bronchus.I was treated with steroids and was told to stay on a maintenance dosefor the rest of my life. I was told that sarcoid was self limiting andthat although I would have problems with the scarring I no longer hadsarcoidosis. Over the years I have continued with maintainance dose ofpredniisolone which is increased when I have chest infections.Over the years I have periodically complained of transient numbness inmy face and thighs,periods of unnatural tiredness,mood swings,depression, unnatural crying reaction to emotion, poor balanceetc.etc. and 2 years ago I had 4 small TIAs which I thought were amanifestation of the Sarcoid but my consultant didn't. I have also hadrecurrent chest infections some of which required hospitalisation (onein Kenya but that is another story)My recent history is that I started feeling unwell about 6 months ago.I did have a valid reason to be depressed and at first thought thatwas all it was but I couldn't 'get back to the surface' even after thecause was relieved. I had some discomfort in my left arm and leg whichat times was ?painful (I am sure you will recognise the ?) this wasfollowed by numbness in my face and in all my limbs. The numbness istransient and worse when I am active. The worse problems are beingunsure on my feet and the feeling of fatigue and lethargy. Yet again I have diagnosed myself. Having rcognised the similarity towhat happened 30 years ago a lot of things seemed to make sense andalthough I am not happy with the diagnosis in many ways I feel morecomfortable with myself and have much more self understanding. I amcurrently waiting to see my neurologist but do not have much faiththat he will accept that the problems are with the Sarcoidosis but weshall see.I have now told you much of my disease history but for those of youwho are still young and newly diagnosed I will say that my life hasnot been easy but I held down a very demanding job as bussinessmanager of a health centre and later as an IT consultant for mediacalpractice. Since I retired I have been teaching Bridge and am currentlychairman of a large U3A. I am finding both very difficult during thiscurrent crisis but hope to be able to continue. I have great supportfrom my husband and 2 married daughters but it is still great to comeonto a site like this and find people with similar problems to mine.It is a great site so congratulations to you all and keep up the goodwork.Yours in love and friendshipPat

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[Guest guest]

,

I'm so sorry to hear of all you are going through. Maybe it is you who should be

giving up on the doctors and not the other way around?

My teenage son was diagnosed with Crohn's this summer, and because we hesitated

to put him on 6MP or Remicade, he has been discharged from further care by the

GIs at our local children's hospital clinic. They sent us a certified letter!

The reason we are hesitant to put him on the medications, is because they are

end-of-the-line drugs and when they inevitably stop working or have to be

discontinued due to side effects, the doctors will give up on our son too. The

medical profession has become heartless, blind, greedy and arrogant

The only support for controlling IBD with diet is the support we can give to

each other, doctors still tell patients that diet doesn't matter.

I wish you a complete healing and a new life, free of negative doctors!

AG

>

> Hi SDC'ers,

>

> I have read a couple emails about people expressing their frustrations

> about the diet and the slow process. I just wanted to share my story

> in hopes that it may give a little encouragement about the diet. I am

> 26 and was diagnosed with Crohn's at age 13. Shortly after my Mom

> found the diet and I went on it for two years and went into remission

> completely. I then hit my teenage years/ college years and went

> through that invincible state. In my early 20's, I had a huge flare

> up which has lasted for years. I was on every medication possible,

> have been on pain meds for five years straight now because I had a

> fistula that burrowed into my posterior pelvic bone, and this year it

> got to the point where I had to have surgery. My doctor removed an

> abscess the size of an orange and I felt better. But, a month later

> was back in the hospital with another abscess because the resection

> leaked. I had a second surgery which leaked again and I ended up have

> a severe E Coli infection in my gut. It ruined my intestines and I

> had to have a third surgery that lead to an ileostomy because they

> could not put back my intestines in such a poor condition. It was

> supposed to be temporary but my intestines aren't healing and the last

> time I went to my Doc she said that 'If I were older, she would just

> remove everything " . This really put a fire under my butt. That day I

> went back on the diet. For the first time in five years, my back pain

> is going away. I never thought my Crohn's would get this bad. I

> never thought I would have an ileostomy. I wish that I had decided to

> go on the diet earlier and maybe I wouldn't be in the situation I am

> now. So, if you have the opportunity to be exposed to the diet...as

> hard as it maybe be and as crapy as you may feel in the

> beginning...give it a shot. Take control of your disease. My doctors

> have given up on me..and they have actually said that! Don't let the

> diet be your last resort as it was for me.

>

>

>

[Guest guest]

These stories are really sad. I used to have a good relationship with my

doctors... until I needed them. It changed my outlook. I was always a very

compliant patient and kept with traditional approaches.

I will say that mine are very competent- in their field, but have neither the

time nor the interest in going beyond writing a prescription and moving on to

the next one in line.

My recent experienced changed my relationship with them. I will still go for

medical care, but no longer have the desire to discuss anything with them. It is

infuriating that doctors would " give up " on someone so sick, or discharge a

worried parent from the practice.

I've learned more from this board, and had more support from this board than

from anyone else. I am grateful.

PJ

> >

> > Hi SDC'ers,

> >

> > I have read a couple emails about people expressing their frustrations

> > about the diet and the slow process. I just wanted to share my story

> > in hopes that it may give a little encouragement about the diet. I am

> > 26 and was diagnosed with Crohn's at age 13. Shortly after my Mom

> > found the diet and I went on it for two years and went into remission

> > completely. I then hit my teenage years/ college years and went

> > through that invincible state. In my early 20's, I had a huge flare

> > up which has lasted for years. I was on every medication possible,

> > have been on pain meds for five years straight now because I had a

> > fistula that burrowed into my posterior pelvic bone, and this year it

> > got to the point where I had to have surgery. My doctor removed an

> > abscess the size of an orange and I felt better. But, a month later

> > was back in the hospital with another abscess because the resection

> > leaked. I had a second surgery which leaked again and I ended up have

> > a severe E Coli infection in my gut. It ruined my intestines and I

> > had to have a third surgery that lead to an ileostomy because they

> > could not put back my intestines in such a poor condition. It was

> > supposed to be temporary but my intestines aren't healing and the last

> > time I went to my Doc she said that 'If I were older, she would just

> > remove everything " . This really put a fire under my butt. That day I

> > went back on the diet. For the first time in five years, my back pain

> > is going away. I never thought my Crohn's would get this bad. I

> > never thought I would have an ileostomy. I wish that I had decided to

> > go on the diet earlier and maybe I wouldn't be in the situation I am

> > now. So, if you have the opportunity to be exposed to the diet...as

> > hard as it maybe be and as crapy as you may feel in the

> > beginning...give it a shot. Take control of your disease. My doctors

> > have given up on me..and they have actually said that! Don't let the

> > diet be your last resort as it was for me.

> >

> >

> >

>

[Guest guest]

At 09:25 AM 12/6/2009, you wrote:

So, if you have the opportunity

to be exposed to the diet...as hard as it maybe be and as crapy as you

may feel in the

beginning...give it a shot. Take control of your disease. My doctors have

given up on me..and they have actually said that! Don't let the diet be

your last resort as it was for me.

,

You are a brave person. Thanks for sharing -- and may the Highest grant

you healing in full measure with your bravery.

—

Marilyn

New

Orleans, Louisiana, USA

Undiagnosed IBS since 1976, SCD since 2001

Darn Good SCD Cook

No Human Children

Shadow & Sunny Longhair Dachshund