My Journey-my first post

My Journey-my first post (Read 970 times)

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Amberr

January 27, 2010, 05:58:59 PM

thoose diagnosis's seem to be playing hide and seek
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hello,
would just like to say before i start, that i think this is the most wonderful website i have come across!

my name is Amber and i am 14 years olds, i have been bearing the brunt of an undiagnosed illness since i was 8 years old. I devlop the most painful water blister all over my body. These blisters can range from 3.5 cm to 10cm in diamater and have covered my arms,legs,abdo,back, neck and face(including lips and mouth.)I have seen five dermotologists and a rhem i have confused all of them and have been abondened by all but one derm, who has currently gone on maternity .I have had 7 biopsy's all showing extremly high neutrophil levels which lead to Dr beginning to think it was either pemphigus or bullous pemphigioid, both autoimmune disorders. however the direct immuno-flourecents tests always come back negitive. I have had three ANA blood tests, the first came back at 1:1600 and the other at 1:1500 and the last at 1:400, we have put the 1:400 results down to the fact i was on 80mg prednisolone when it was taken. I have several other health worries, including severe joint pain/swelling, palpations, high blood pressure( 164 over 140), spinning sensations, and heahaches.

I have been on various medication, including; Prednisolone, CellCept, Dapsone and various topical treatments. At the beginning of my last my last hospital stay (Jan 2010) they decided to take me off the prednisolone,dapsone and cellcept and leave my just on the topical treatment, with the addition of Codeine for pain and chlrophenamine and hydroxozine for the itch.

I would be lying if i had said that over the last year i have come to the end of my tether, trying to live with this but also trying to maintain and act like everyone else my age.
Thanks and sorry for it being such a long message.
Amber
x Huge Hug

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"we are all joined together by a common hope and an uncommon bond"

Samantha

January 29, 2010, 03:25:39 PM

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Posts: 921

I Will Be Diagnosed !

to the forum Amber

Your symptoms sound so painful Cry

Have you ever thought about trying alternative therapies Question

Herbalist, naturopath, or maybe even acupuncture Question

one may help with the pain while the Doctors work out the problem.

I hope you have good family support

Sammy

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Amberr

January 29, 2010, 07:23:50 PM

thoose diagnosis's seem to be playing hide and seek
Newbie

Gender:

Posts: 5

Hey,
hope you are well, and everythings going well!

. You were right things are pretty painful even with the codeine im still in a lot of pain. We have tried the natural approach on so many occasions but it seems to be anything that could remotly improve my immune system and everything goes into over drive, which is one reason why i am very scared about comming off all the steriods and immunosupressant as they will enable my immune system to build its self back up and i know from previous experience that it means nothing but hell for me. I never knew that i would get to the point were i actually didnt give a damn what the diagnosis is, i just need a name- its like untill we can get a name we are so limited to treatment options, as they dont want to go down the iv treatment line due to the money.
my family have been an excellent support, we have our moments and theres alot going on with other family illness going on but, we always pull together.

Huge Hug

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"we are all joined together by a common hope and an uncommon bond"

Samantha

February 23, 2010, 06:55:41 AM

Group: Administrator
VIP Member

Gender:

Posts: 921

I Will Be Diagnosed !

I know how you feel, it's so real and so painful it's such a dissapointment when all tests come back normal Sad

Keep pushing and whatever helps the pain go for it

Sammy

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mello

August 10, 2010, 11:38:21 PM

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Posts: 7

on a quest for health

Hello little amber, i am so sorry for your troubles, it is terrible for you that you have to go through this so young. In my experience homeopathics only make things worse as they stimulate the immune system which is already over active and needs suppressing rather than stimulating. Chinese herbs seem to work on a different principle and so are much safer for people with autoimmune problems. I am not a health professional but this is my opinion based on my own experiences, and those of other autoimmune sufferers. MUCH love to you, i'm sorry i cannot be of more help.

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just because doctors give up on you does not mean you should give up on yourself!!

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