blood work to look for

[harboy]

When my daughter was sent home from ER two weeks ago, they gave us a copy of the reports. Im not a licensed medical professional.  Does your blood work become affected by chiari?  Her immune level was down a lot.
Please tell me what you have experienced  what you wish the drs would have told you in the beginning. I need help,
Thank you Cindy  

[Elisaandbucky]

Hello. I experienced my symptoms for a long time (headache, daily nausea, and vomiting. But, like Selma said, it wasn't until MRI that I got a diagnosis. Then from there, the frustration began, as not all doctors even recognize Chiari. My neurologist told me it was "nothing," and sent me to a surgeon who kind of chuckled and agreed. Long story short, I did some homework to find a true Chiari specialist. Only then did I receive options to take for my own Chiari. Read, read, read. It's the only thing that will arm you with the knowledge you will need to know what steps to take.

[selmaS]

  No worries, I may have left a few things out, but hit the highlights.....with Chiari we tend to forget and after we hit post we are like ...duh I forgot this or that ...lol...

I am glad you were able to see some similarities....

When I was younger MRI's were not around...so  there was no way for a DX...so your DD is lucky that they can DX at a young age, and she does not have to wonder what is wrong....

[harboy]

Thank you so much for sharing your story. I felt as if you were narrating my daughters childhood.  I am so sorry you had to live so long without the answer of a diagnosis.  You must be a tough gal. I admire you.
Your experience has taught me so much and I am having ah ha moments with my daughters life.  Thank you
Warmest regards,
Cindy

[selmaS]

  I always had some sort of pain...when I was very young Drs said it was "growing pains" I had leg pains, and IBS issues as long as I can recall....I did not like the feeling I got swinging on a swing, or watching a Merry go round, blowing up balloons and bubbles also was something I could not do for extended periods.....I hated gym class....yelling, jumping etc caused headaches....

I had several black outs no idea what they were, passing out or what or why....

headaches increased until when in high school I was sent to s shrink....he claimed I did not have a brain tumor, or that I would die, and asked what I was going to do after I graduated....on the 3rd visit of the same statements and NO testing was done so how he knew there was no brain tumor was my concern...but I stood and said I knew what I was not going to do and that was waste my time going there, I walked out...lol...

Many meds were given over the yrs....but no answers until I was 48 and that was found after I had a black out or drop attack as I now know it was, that lead to injuries that required surgery.....my knee and ankle needed to be fixed and my knee surgeon suspected lupus and referred me to another Dr that sent me for a MRI and my Chiari was found,....

I hope this helps.

[harboy]

thank you Selma.
I understand medical advise is a no no. Is it ok to ask you to tell me your story of how or what your body was doing that let to the DX that you have. I understand if it is too personal.

Anyone else is welcome to respond too ..... I have so much to learn...

Thank you ,
Cindy

[selmaS]

  Hi Cindy, I believe you asked this in another thread...and yes, we can have autoimmune conditions or connective tissue disorders which can show in our blood panels....we can also have low levels of vitamins and minerals...and malabsorption....

  I can not really tell you more then that...not being a medical professional I can only share what I have been told....I do have an autoimmune thyroid condition Hashimoto's thyroiditis....and I have Ehlers-Danlos a connective tissue disorder...and EDS can affect how we absorb vitamins and minerals....