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!
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.
I'll definitely look into getting those scans. If nothing else, it would make me feel better just to see them for myself.
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!
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.
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.
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...
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 : )