More confused than ever

[seamatty]

Ok so to make a long story short I have had neuro symptoms for over 12 years. Dizziness, imbalance, tingling, headaches, head pressure, etc etc

I had been checked for everything...Ms, lupus, autoimmune - all came out clear. 2 years ago it was found on like my 10th MRI that I had chiari 5mm. Saw 2 chiari specialists - dr. Dr at Cleveland clinic and dr ellenbogen at Uw. Both fantastic doctors by the way. Well dr ellenbogen saw me a year ago and thought I had chiari but was def NOT surgical. In fact he told me to run like mad if anybody wants to operate on me as my cine study looked fine and he thought I had enough space in my cranium. Here is where things get confusing.

I saw dr E about 2 months ago and after viewing my latest MRI he said my tonsillar herniation is 3mm or less and now is not sure I have it. I have every symptom but I am not sure what to think of all this.

Now trust me I am not trying to rush it I surgery or any diagnosis. Just after 13 years and thousands of dollars I feel I am back to square 1. Any thoughts or advice would be appreciated

Thank you all for your time

Matt

[selmaS]

  Yes, I know it can seem confusing, and the beighton score is used for both...what is ur DD's score?

I am going to post a letter in my journal that may or may not help clarify all this...I hope so...as I know  it is very confusing and I am still learning all about this as well.

  

[seamatty]

Selma

Are hypermobility and eds hypermobility type the same? It seems so from reading it. My daughter definitely has hypermobiity but it seems that is real common. Nevertheless when I read about the Beighton scale it seems all you need is to score a certain score and then you are diagnosed with hypermobility or eds (type 3) as though they are the same???

Does my question make sense?

[selmaS]

  Well, I happen to have TC...I do not get a pulling at my head tho, more in my lower back....

TC is not always seen in a MRI and bcuz of that is also known as Occulta TC and Occulta means hidden.

A indication u may have TC would be in ur brain MRI if u have an elongated brain stem.

Another indication would be a sacral dimple or a patch of hair....

  One test they can do if u have bladder issues is the urodynamics which tests the bladder muscles and how it works....

  I had many UTI's over the yrs, so it all fit....

[seamatty]

Sorry last question...how much do you know about tethered cord? I get a pulling sensation in the back of my head from time to time but I did have a lumbar MRI (twice) and nothing was mentioned about it. How much do you know about TC?

Thx for all your input - your the best

[selmaS]

  I do not think EDS is rare...just as I do not think chiari is rare...JMHO tho..


  I was not aware some issues I was having was hypermobility issues...I do now...when I sleep on my side my shoulder dislocates and hurts...I had no idea, only felt the pain...now I know it is popping in and out of joint.

SO yes, I do have those symptoms in addition to my slow healing and easy bruising....I also have an issue with the cold, it is called raynauds phenomenon  which is an EDS issue too.

[seamatty]

Also did you have any hypermobility symptoms with your EDS?

Sorry for all the questions :) im trying to educate myself on all this...you are good!

[seamatty]

Selma, is Eds quite rare? I read 1 in 20,000... Is that true?

[selmaS]

  The NL that was in house with my NS dx'd my EDS...and yes, u can get some HA's from EDS....it all depends on the type of EDS u have.
Chronic recurrent headaches may constitute the neurologic presentation of EDS in the absence of structural, congenital, or acquired CNS lesions that correlate with their symptoms. Individuals with EDS may be prone to migraine due to an inherent disorder of cerebrovascular reactivity or cortical excitability....

EDS also can cause cervical cranial instability and autonomic dysfunction  these will cause HA's ..too.

Here is a link u may want to look at-http://inthefringes.wordpress.com/eds/

[Rylanesmom]

No that is your chiari.  It can cause cranial instability which is a concern for surgery.  It also can cause healing and rejection issues.  Chek out the ehler danlos syndrome forum and google it too.  It is just something to be checked.

[seamatty]

Selma

What symptoms does EDS usually produce? Does it cause occipital head pressure?

[Rylanesmom]

My chiari specialist (Oro) diagnosed me ith EDS.  The problem is that you then need another specialist.  I finally found a rheumo Dr that treats EDS in my area and he was a waste of my time.  He really did not help a lot and said that since it is not vascular (based on testing I had one) the others are not life threatening and they would only treat symptoms.  The problem is ... Which pain and symptom are my EDS and how do we treat them urg.  I old like to know hat kind regardless of what that means.  So again I though I did the leg work to get a Dr to help .... and not so .... after chiari healing I will find EDS Dr.  

[seamatty]

Selma

Who diagnosed you with EDS? Was it a chiari specialist?

[selmaS]

  When I heard those were the symptoms I also said that was not me, but after a Dr checked me, I was found to have it....I had no idea how flexible my joints r, and no, not all the symptoms r  noticeable and  not everyone has all of them.

I knew for yrs that I was slower to heal and bruised easy...and those 2 were on the EDS symptom list that fit me....

In the EDS group here on MedHelp I posted a few videos by a Dr that also has EDS and she does a great job explaining the different types....

http://www.medhelp.org/forums/Ehlers-Danlos-Syndrome/show/417?controller=forums&action=show&id=417&camp=msc

[seamatty]

No lesions just went to the next step to try and rule out ms - that was ruled out completely after LP

[seamatty]

Is eds pretty obvious being some of its symptoms are visible - I.e. - stretchy skin and joint flexibility - I don't think I have either of these problems

[selmaS]

  So, did they see multiple white lesions on ur brain to suspect MS that they did a LP? Or did they do the LP b4 the brain MRI?

[seamatty]

Yup for MS

[selmaS]

  Yeah it has to do with the optic disk...and the nerves in the eye....but most times they do the LP....

Was the orig LP being done for MS? If so, that is y, they drew it for fluid, not looking at pressure.....

[seamatty]

Youll love this... They didn't check the pressure... Nice job docs :) I heard they can diagnose ptc thru an eye exam too... Have u heard that?

[selmaS]

  Yes, that would be a LP...but, if u have the right person doing it knowing u have cerebral tonsil herniation they can draw slowly.....plus they do not need to remove ne fluid as in a MS test, they only need to get an opening pressure.

The biggest issue is to stay flat afterward no lifting etc...and keep hydrated so u do not get a leak....if done properly this test can be done.

If u already had the LP, do u know what ur opening pressure was?

[seamatty]

I know for ptc they have to do an LP...I refuse to have that agin. That sent my headaches down a bad path

[selmaS]

  A NL should be able to handle Dxing all of them,but  a rheumatoid does specialize in EDS....

[seamatty]

What kind of doctor would I see to rule those out?

[selmaS]

  Yes, it is considered a bony structure.....so they may have checked it......

So that leaves PTC, POTS, and EDS to rule out.