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2640940 tn?1465231732

EDS?

Good Morning,


I was diagnosed with Chiari Malformation in 2008 , Decompressed in 2012!
I moved to ID recently to escape the long harsh Winter months in CO! I have been doing better here then I have in yrs! That is until Mother's Day weekend!
I've been trying for yrs to get tested for EDS! Right now I'm having issues even getting into a Neuro?
The DR's here won't listen and I'm getting worse by the day!
I bruise super easy, dislocate ribs, SI joint, double jointed, I've had 5 kids who were all 9lbs and over, I'm 5'7 and go between 112-120! Even myOB made a comment about what other Mothers would give to have my skin? Because I was huge yet not 1 stretch mark!
I was shocked when I looked up EDS to see the definition of club foot! There was a picture of the same brace I had to wear when I was little! I have had flat feet, orthopedic shoes in Middle school but I'm the only Survivor in my family and can't ask the questions?
I forgot to mention my Father, his 2 brother 's and my grandfather all passes away before 50 from Vascular and heart disease! I have a cousin on my Father's side who had a stroke at 30. They sent her home Several times saying she was too young? Now she's in a wheelchair and can't function very well! Why do they make us suffer?

I was also diagnosed with an unusually large amount of White Matter Lesions on my brain and the last MRI showed they have increased in mass and quantity over200!
I'm getting desperate! I have spent the last month stuck home on my couch, heart palpitations, cold sweat's, ringing in my ears, numbness and tingling, problems getting words out, that's just the short list! I've lost all my muscle tone over the last month or so, my legs have always been thin but now look like chicken legs! I'm having a lot of stomach issues also.
I went back to the Internal med Dr here and begged for a referral to Neuro and once again I've been refused, I asked for an MRI no?
I was feeling so horrible and frustrated i teared up! He then asked me if I'd considered a Psychiatrist??
Then he did the Fibro touch points?? I know my body and can tell something is really off! My ICP is bad headaches, burning pain in my head! That's not Fibro!

I'm in the Boise area any help or suggestions would be so appreciated!!
Thank You
2 Responses
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620923 tn?1452915648

  Most Chiari Drs will  rule out MS as the symptoms are so similar....not sure why your Drs have stopped looking into other possibilities.

I know how difficult it is to get people to listen and understand Chiari....there are many Drs and Drs that are NS's that do not understand how it can and does affect us, so we need to give our family and friends slack.....

What type of INS do you have that the Drs do not want to deal with it?
Helpful - 0
620923 tn?1452915648

  Hi Deb and welcome to the EDS group.

I had a similar experience in that while in high school I too was sent to a psychiatrist....and DX'd with fibro....only I had more tender points then the 18 for fibro....but the Drs here said that is what it was ....once I got to a true Chiari specialist that is also well informed on EDS, I was told it was EDS and not fibro......I was also referred to a geneticist that specializes in EDS for a more in depth DX as there are several types of EDS.

Did you have a LP for the white matter lesions? I know it is possible to have them due to headaches, but with the number you have MS should be ruled out.

I am sorry I do not know of Drs in your state....but have some in neighboring states if you can travel to one....I posted in the Chiari forum  a reply there also .
Helpful - 0
1 Comments
Thank You Selma!
I explained to that Dr before my Chiari diagnosis they thought it was a possibility, but afterwards they were sure it was Chiari. I explained I understood some of the similarly between them, but as you said I have many other points and symptoms.
If they had to deal with what's been going on in my body the past month they would have a few tears and frustration!
I was watching some of the CSF videos on YouTube this AM! It's so obvious that this is Neuro and Stem from Chiari or one of the Sister diseases like EDS.
I don't understand why I can't get an MRI?
As for the Lesions, once I was diagnosed with Chiari my other Drs quit looking into any other issues I've had.. So no, I wasn't tested for M.S..
I live alone and don't have much support here. I have a Son but he doesn't want to learn about Chiari, I've sent him videos, Articles etc yet he told me I need to be stronger push through , I'm making myself sick? So he won't even go to the store for me because he thinks it's enabling me to stay home and be Lazy!
Sorry about the long reply again ! I'm so grateful for your advice and being able to talk to someone who really understand's..
I've been legally disabled and have Medicare, this is another issue I'm running into most of the Specialist I've contacted won't take me due to M y insurance..
Again thank you ! It helps knowing I'm not totally alone..
Debbie
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