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Undiagnosed Illness Forum  > Recently Diagnosed > Recently Diagnosed > Topic: Multiple Sclerosis, AOSD, AS, HS, Chiari Malformation, And Jaundice
May 21, 2012, 09:07:05 PM
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Multiple Sclerosis, AOSD, AS, HS, Chiari Malformation, And Jaundice  (Read 4492 times)
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Offline  Keilia
October 09, 2010, 04:16:43 AM

Formerly Undiagnosed
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Gender: Female
Posts: 455

Told You It Was Not All In My Head!
Well, the jaundice is new and it comes and goes, have no idea why that is happening. BUT, after 4-5ish years I guess, maybe longer, this was my first diagnosis that was taken back (The MS) Turns out I DO have it. Big fat white lesons on my cervical spine. I also have Adult Onset Still's Disease and Ankylosing Spondylitis as well as Hydraentitis Suppuorative (spelling is wrong I am sure). Today I was diagnosed both with MS and Chiari Malformation. Baically part of my brain is sinking into my spinal colum. So yeah, Im happy to be 99% diagnosed, but I kinda wish I didnt know cause when I thought I was being a hypochondriac I was ok. Jut *sigh* It could always be worse.


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~Keilia~
   
Offline  Samantha
October 10, 2010, 08:27:20 AM

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Posts: 920

I Will Be Diagnosed !
Wow Keila so many conditions  Confused my GOD why they didn't find these previously  aggressive
I have to research some of these when I get time as I have no idea what they involve (other than loads of pain)  Sad


I hope your family are taking good care of you sweety.
 Huge Hug
Sammy


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Offline  Keilia
October 11, 2010, 03:24:57 AM

Formerly Undiagnosed
Sr. Member
****

Gender: Female
Posts: 455

Told You It Was Not All In My Head!
My pain is actually now well managed. Medical MJ has been a Godsend. It covers the anxiety/PTSD, the depression, (but I still take Prozac) the muscle cramps, the shaking, the vomiting is gone when I have it, but will come back within a few days if I don't. It makes the pain gone most days, some days its tolerable, but it's never really bad anymore. BUT, my memory sucks bad. Thankfully my hubby (married 13 years today, WOO HOO!) is always around to fill in the blanks where my memory fails. I am also on 2 anti inflammatories. I had my pilonidal cyst removed 2 weeks ago. Next is surgery either for the HS, or the Chiari Malformation and totally screwed up discs in my neck (c4-c7 are severely degenerated and slipped) In between all this, I will be investigating the jaundice. It comes and goes and does not happen often.

I hope everyone is doing well <3 <3  Huge Hug


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~Keilia~
   
Offline  Keilia
October 11, 2010, 03:26:25 AM

Formerly Undiagnosed
Sr. Member
****

Gender: Female
Posts: 455

Told You It Was Not All In My Head!
I still think they were not found because I was labeled a hypochondriac and a junkie, when I was not. I saw one rheumy for about a year now, and she has been an angel. The new neurosurgeon is FANTASTIC also. He even laughed at my jokes.


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~Keilia~
   
Offline  New28
October 11, 2010, 06:48:23 AM

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Gender: Female
Posts: 339

When all else fails, play dead!
Meh. THEY may have thought you were a junkie and a hypochondriac, it takes someone who's more then that to come and look for answers.

I don't like the idea of surgery, doctors tend to think it'll fix everything. I think that when you're able to fix a problem, you also have the potential to make stuff much worse too. They down-play the risk.


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Offline  Samantha
October 11, 2010, 08:16:24 AM

Group: Administrator
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Gender: Female
Posts: 920

I Will Be Diagnosed !
Happy 13th Anniversary Keila  Dance

I knew "It wasn't all in your head" just took way to long to find the right Doctor to help you out  Smile I'm so excitied for you, finiding a diagnosis does help

 Huge Hug
Sammy


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Offline  Keilia
October 12, 2010, 12:46:29 AM

Formerly Undiagnosed
Sr. Member
****

Gender: Female
Posts: 455

Told You It Was Not All In My Head!
 Huge Hug Huge Hug Huge Hug Dance Dance Dance


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~Keilia~
   
Offline  Keilia
October 16, 2010, 10:05:52 PM

Formerly Undiagnosed
Sr. Member
****

Gender: Female
Posts: 455

Told You It Was Not All In My Head!
Ok, warning, I am not sure if this happens to others or not when they are diagnosed -

I am ANGRY. VERY angry. The worst thing I have is the Chiari Malformation. And I have had it my entire life. I cannot even begin to count the MRI's I have had done of my brain and spine in the last 4 years alone. If even I, someone who never even graduated high school, could see the problem then radiologists and neurologists sure should have seen it. I am, I think going through the stages of grief. EVERY SINGLE symptom is explained by the CM1 except the jaundice. We found the autoimmune by chance it turns out. BY CHANCE. My aspiration pneumonia and swallowing difficulty came from the CM1. EVERY SINGLE time I went to the ER in absolute agony they treated me like a junkie. They even started calling me a junkie, a liar, a hypochondriac, etc. I was turned away multiple times and on several occasions considered suicide because of the pain. And all along, a high school drop out if the one who noticed it first. I AM SO FRICKING ANGRY.
 aggressive aggressive aggressive aggressive aggressive


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~Keilia~
   
Offline  Keilia
October 16, 2010, 10:07:27 PM

Formerly Undiagnosed
Sr. Member
****

Gender: Female
Posts: 455

Told You It Was Not All In My Head!
Dont get me wrong, I am GLAD to be diagnosed. Ecstatic. I still cannot quite believe it. And I am grateful for my rheumy and for my brand new neurosurgeon who found the chiari. But I am VERY angry too.


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~Keilia~
   
Offline  Keilia
October 17, 2010, 02:11:36 AM

Formerly Undiagnosed
Sr. Member
****

Gender: Female
Posts: 455

Told You It Was Not All In My Head!
I think I will be calling my shrink about it Monday. I think I am also uptight because I have no idea what will happen to me with the autoimmune...I tested positive for the genes for a couple of them but every single symptom except jaundice is explained by the chiari. My head is swimming =( aggressive


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~Keilia~
   
Offline  New28
October 17, 2010, 08:44:02 AM

Sr. Member
****

Gender: Female
Posts: 339

When all else fails, play dead!
Look at it this way - they had no idea what symptoms linked to what, they could've tried to add the jaundice in with everything else and ended with 'it's all in your head' and other such crap.
It's as horrible for them coming up with false diagnosis then being proven wrong by some other symptom coming along. There are no dotted lines as to what symptom fits with what, they make educated guesses!


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Offline  Keilia
October 24, 2010, 12:09:31 AM

Formerly Undiagnosed
Sr. Member
****

Gender: Female
Posts: 455

Told You It Was Not All In My Head!
The problem I am angry about - my brain has been this way for YEARS. Someone should have noticed it, considering I have had so many full brain MRI's I am probably magnetic myself by now.  And I am the one who noticed it. And its VERY obvious on the image. I am sure I will be less angry soon. Just <SCREAM> Ok, better =)


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~Keilia~
   
Offline  New28
October 25, 2010, 11:51:43 AM

Sr. Member
****

Gender: Female
Posts: 339

When all else fails, play dead!
I get angry too.  I never finished year 12(probably because my mother decided to give me 1/2 the year 12 workload for 2 years). It wasn't my brain with the problem, my nerves are damaged! 21 years, and those morons still haven't answered anything aggressive

Reading brain MRI's not an exact science, maybe it's because you know what you're looking for now. Add in the wrong symptoms and you're looking at another diagnosis altogether.


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Offline  Keilia
October 28, 2010, 01:06:51 AM

Formerly Undiagnosed
Sr. Member
****

Gender: Female
Posts: 455

Told You It Was Not All In My Head!
I wish that were the case - but on my MRI's it is VERY clear where the brain should be, and where mine is actually stopping up the spinal canal. And its symptoms mimic MS. And its been there since birth. When I first saw it and aske what it was, I had never even heard of Chiari Malformation. But I am less angry now. Past is past.


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~Keilia~
   
Offline  New28
October 28, 2010, 10:32:19 PM

Sr. Member
****

Gender: Female
Posts: 339

When all else fails, play dead!
Ok...can I be infuriated yet? Chiari's VERY noticeable, idiots went to school for years and they bloody missed it? I'd share the diagnosis with all your ex doctors and ask them to explain how in hell they missed it!

Maybe if my docs were willing to diagnose me up to 5 years after this deficiency started showing, I might still be walking!

How did they miss the MS? 6 diagnoses and they missed them all? I'm sorry, your doctors are idiots!! aggressive aggressive aggressive


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