Chiari Malformation Community
New and Undiagnosed
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This patient support community is for discussions relating to Chiari Malformation and Living with Chiari Malformation.

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New and Undiagnosed

I just joined here, so I wanted to say hello.  I have yet to receive a diagnosis of any sort, but the more I read about ACM, the more concerned I am that I may have it.  I've done a lot of research regarding my symptoms over the years, but this is the only thing I've found that seems to cover ALL of them.  You can read my whole, long story on my profile page.  

My biggest problem right now, honestly, is convincing myself to go see someone.  I saw numerous doctors when I first started having issues with the dizziness and headaches, but none of them ever seemed terribly concerned.  Even when they did a CT scan the only answer they could come up with was a sinus infection.  I had plenty of sinus infections as a child, and I knew that was none had ever made me feel like that.  I was devastated and disgusted, and I haven't seen a doctor since.  

Now, I'm at a point where I haven't been able to work (I can't drive to get there and I'm not sure how well I could handle working anyway) for years.  So I have no insurance, no income, and no way of paying for medical care.  I intend to apply for Medicaid, but my gf/driver works during the day so getting to where I need to go to get the paperwork done is something of an issue.  And it can take up to 60 days to get approved (assuming I do).  My symptoms have gotten worse lately and more persistent, and I don't know how long I should wait.  I'm considering going to the ER and hoping they'll write off the expense (that's what they did the last time I went) or just paying for it when I can, if not.  

But I keep battling with myself.  One moment I'll have myself almost convinced, and then I'll talk myself out of it again as soon as I start to feel better.  And now I'm rambling.  Sorry.  Anyway, I just wanted to sort of introduce myself and say hello and maybe get some advice.  Thanks for listening!
8 Comments Post a Comment
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620923_tn?1405964489

  Hi and welcome to the Chiari forum.

Many of us have had a similar time with Drs not being able to get a Dx, for this reason we suggest u request copies of all tests along with reports so u have them and readily available to get another opinion.

Many times it is clearly visible that chiari or a syrinx is the issue, but many Drs do not feel they r symptomatic conditions and may not report to the patient they have them....so, it is good to get the copies and have them reviewed by other drs.

Glad to welcome u, sorry about the reasons.

If I can help in any way let me know : )
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2192667_tn?1338321405
Thanks for the welcome, Selma!  It's good to know I'm not alone in all this.

I wish I'd thought to get a copy of that CT scan they did a few years ago.  It's always bugged me because they asked when they were done if I'd ever experienced any sort of head trauma, which made me wonder what they saw.  But I told them I hadn't and it was never mentioned again.  

I know it's possible to get ahold of your medical records, but I don't really know how to go about it.  Thinking I should look into that...
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1968463_tn?1374761413
Hello and welcome. SOrry to welcome u under these circummstances. I feel for you. Here is a tip.... if you get medicaid....they can  have drivers that will pick u up and drop u off at your Dr appts... for free. It is a nice extra for those who are unable to carefully drive themselves.

I will keep u in my prayers and pray that you will find the answers that you need soon.
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620923_tn?1405964489

  U may be able to contact the facility u had the testing done and request copies, since it was a few yrs ago it may take some time for them to pull them up and make copies...just tell them u have continued issues, and need them for comparison. I got yrs worth of MRI's and found I had TC or that it was seen on a MRI yrs B4 I was dx'd and told about it , all from getting old MRI's.

So u will be able to get it.It is sad, but we have to push for answers.
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2192667_tn?1338321405
I had no idea they did that!  That's wonderful!  The only sort of transportation assistance I knew of was for senior citizens, and I'm only 28, so that's out.  :P  It's a bit frustrating to see all the help that's available for children and seniors and to be stuck in between.

Thank you!
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2192667_tn?1338321405
I'll definitely look into getting those scans.  If nothing else, it would make me feel better just to see them for myself.  
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1925822_tn?1333709217
Welcome to this great forum.getting the diagnose is scarry...but more scarry is the fact of so many uneducated doctors.go and get urself the answers u need and get a specialist.i am 29...i know it feels too young to be in a situation like this...for anything u need...this forum is the right spot.
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2192667_tn?1338321405
Thank you for the warm welcome and the support.  It never ceases to amaze me how unwilling some doctors are to consider any diagnosis that isn't relatively common.  I had a doctor once, back when I was having some skin issues that turned out to be allergy related (I think...) who told me he wanted to see if I had dermatographia because it was one of the major symptoms of something I had a lot of other symptoms for, but he didn't think it was really that because it was very rare.  He never even told me what it was.  Even when it turned out that I DID have dermatographia.  Instead, he said my symptoms were from stress.  Ugh.

I'm sure I'll be around here a lot.  This seems like a really wondrful, welcoming, helpful group, and I'm glad I found it.  Thanks again!
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