where to seek help?

[nikkisorbet]

I have been researching this hard in the last few days, and I am sure I have chiari malformation. Where do you go to seek help, your family doctor, an ER? I have been having some alarming to me thing going on in the last cpl months, and most especially in the last week, but my fam doc isn't back for another 12 days. Can you tell where/how you got diagnosed etc? Thank you so much, I am so stressed right now and kind of scared :'(

[selmaS]

  I am sorry to hear about your Aunt....but it is possible she had Chiari and not MS as so many have been misDX'd  over the yrs.....

Even fibro....I was told I had that and now my Drs are telling me no it is EDS not fibro....my sister and my mom have a fibro DX too....

It is funny how the more you know and look around how we can see how all the dots connect with this one....

[nikkisorbet]

The only thing I know about my family is there are people on both sides who have been diagnosed with things that CM can be misdiagnosed as, but that's not much to go on. Our family isn't really close. On my mom's side her mom has fibromyalgia, and I have a cousin on that side with some hypermobility, my dad's sis had MS before cancer took her. I havnt heard of anything else going on, but moms side is estranged.

[selmaS]

That pressure HA when you cough, sneeze...laugh is a typical one of Chiari....and yes the brain fog too.

Oh Ok.....much of those could be Chiari and not  Irlen's....

Does anyone else in your family have HA's or any of the symptoms you have?

Keeping a journal is a good idea so you have it to share with your Drs....

Keep in mind Chiari symptoms cycle and can flare....so changes to symptoms can be a constant thing...

Keeping a log or journal will help you remember which ones you have had how long they lasted etc....very helpful when a Dr asks.

[nikkisorbet]

Thank you for your kind words. I know there may be things going on, that it may end up not CM, I am usually very in tune with my body, and something def is not right. I forgot to.mention the huge pressure feeling in my head whenever I cough, sneeze, bend over, and the perpetual fog I've been in for years. I havnt gotten tested for irlens, sorry I was half asleep this morning when writing, but I do have almost all the visual things associated, like the visual noise, and weird text things. a friend posted about her aspergers/spd diagnosis and I started reading out of interest, and this is what started me down questioning everything, because so much fit, that it felt like a light went off, looked some associated things, like irlens and eds, and it really freaked me out how much fit almost exactly. What led me to chiari was the pressure in my head, I have a bad cough right now and I was looking up what the possible causes are.

[selmaS]

  Hi and welcome to the Chiari forum.

Getting a Chiari DX can sometimes take time...as not all Drs feel Chiari is anything but an incidental finding....so, ALWAYS request copies of ALL testing...along with the reports....this will make it easier to get other opinions.

When were you DX'd with Irlen's?  What testing did they do?

I have many of the same issues as listed for Irlen's.....but have never heard of it...and I am sure we all could find DX's on line our symptoms fit into....there are many non related conditions that share symptoms with Chiari and we even have related conditions with the same symptoms....so figuring it all out is not easy and can be quite frustrating.

See a NL to have testing and as I stated above request copies to be sent to you of the test and reports....once you have those tests results you can send to a true Chiari specialist for review.

We do have a list of Drs compiled by the members here...the list is not a referral nor an endorsement, but it is meant to be used as a tool to research Drs....a starting point....
Educate yourself on Chiari and ALL related conditions as that will help you know when you have found the right Dr for you.

Know you are not alone <3

[nikkisorbet]

I have also recently discovered I have Irlen's syndrome, and my whole world is rocked with things I took for granted as normal, and discovering that they aren't.

[nikkisorbet]

http://chiaricare.com/chiari-1-malformation/symptoms.aspx
About 98%ish of what's on this list. I've suffered from huge throbbing swooshy headaches all adulthood, related to be neck tension at the base of the skull, almost everything has been a slow,  vague progression. In November I started having tingly, numb fingertip, and it's now 2 fingers partially numb, and hands arms lose feeling very rapidly when using them up at all.This week I started to be having some weird breathing difficulty, where I just seem to forget for a few moments?  Or heavy chest, it's weird and nothing like anything I've experienced.
I also have a bit of a strange skull shape to me, the back does not protrude much, and I have a point on my head (tiny). I am also suspecting EDS based on other lifelong things.

[Lottida]

Hi.....sorry that you are having problems.  Chiari can cause so many symptoms, but related conditions can cause them also.  The symptom severity depends on if you should wait to see PCP (family doctor) or go to ER.  Chiari is diagnosed with MRI of brain, however it is usually found accidently.  Not very common to have MRI to rule out Chiari since many doctors are not familiar with CM-I.  What type of symptoms are you having??

Selma will respond to you at some point on this forum.  She is very knowledgeable of CM-I & gives great advice.  I would suggest to keep a detailed log of all of your symptoms & write any questions that you have for your MD visit once made.  Any doctor can diagnose CM-I via MRI of brain, however you will need Chiari specialist to treat it accurately.  Keep researching also so that you have as much knowledge as possible.  Good luck with your search & sending prayers for symptom relief.