Any thought?

[wingnutt]

I've been having terrible pain over the top of my hip bone for 2 days now with numbness on my inner thigh?Also have3 so far, what they call back mouse cysts on my other side of my back. They're very painful!

[wingnutt]

Very good information! Thank You for sharing that. I think I'll be changing my appointments. I now have an appointment with a Rheumatologist. Thanks again!

[selmaS]

  Thanks Mel.....u experience is invaluable to all of us : )

Hope u feel better soon <3

[Rylanesmom]

I think with the heart issues if you are already referred to a geneticist I would keep the appointment.  Reason being is they WILL know what EDS is and may be better able to get you to the right Dr's. Also it sounds like there are some more things for them to look at.  Here is my story.  I have chiari and was finally diagnosed after over a year of pain and crying and the Dr ordering an MRI to check for MS.  I had done my research and knew that a specialist was the only way I would go and I saw Dr. Oro in Aurora Co. Based on all the information from Selma and this sight I knew I had EDS before I was even seen. Dr Oro confirmed that I had EDS.  It was funny when I met with his assistant and said I think I have EDS.  She said why I showed her all my tricks and she said we don't need a specialist or Dr. O to know you have EDS you have it.  So he confrimed.  He ordered flex xrays of neck (stability for upcoming decompression), and many other tests including a mrv which shoes if I had any brain bleeds previously. He also ordered my staples left in longer after surgery.  I have some veins close to skin and had horrible varicose veins which can be vascular traits. I also had eco, ekg, ct scan of chest etc. Everything was good and I also have 2 kids with no organ ruptures ever.  I am 39 and am also at life expectancy for vascular with no issues.  Because of all of this they felt that surgery was ok without seeking a  geneticist.  They were confident that I had either type 3 (hyper mobility) or classic type.  These are not confirmed by biopsy so the painful tests are costly and unnecessary.  I honestly was a little frustrated because I wanted to see someone who knew what I had and what to do with me.  I had called at least a dozen rheum before finding one that would see an EDS patient that knew what it was and when I finally found one I was disappointed to find there still isn't much they know and my pain is not touchable.  I have hip problems too and Achilles and  it has hurt to walk for over 2 years.  We will get back to that.  Fast forward I knew both of my children had EDS too.  SInce they only treat symptoms I decided not to do anything until needed.  Then my teen started having major neck pain that would not let up.  I knew it was the EDS.  So I taught her pediatrician what EDS was she turned white said you're right and referred me different specialists at the Children's Hospital for all the issues including the geneticist.  One thing that was great is all these Dr's knew what EDS was.  I have a written formal letter of diagnosis for my daughter that she has EDS type 3.  The thing that made me go ok I don't need to see a geneticist was confirmation that my neuro and rheum were right...you don't have vascular so we only treat symptoms.  Unfortunately Dr after Dr will tell you I'm sorry we are trying but we don't know what to do.  My daughters geneticist had 2 generations there my daughter and myself so she would look at her then ask if I would show her etc.  Just by talking to us she knew classic or type 3.  After looking at our skin she said classic would have much more discoloration and scaring.  She decided we were type 3 and did not need the painful tests.  They same type runs in families also so for me I knew I did not need to pay to talk to someone.  My daughters geneticist sent paperwork to peds dr and is now a contact for ped.  So I am still thankful I went but also my Dr's were right I don't need to go.  Back to my hips I have bursitis and band problems meds and shots don't help.  In my Achilles I have tendonitis, bursitis, and spurs.  Finally my rheum said I should see one of the top FOOT surgeons...not just an ortho and we are trying some experimental things....we shall see.  I have learned we just need the top Dr we can get to.  Good luck!  Depending on what your Dr's are saying (and yours did refer you) it might be worth your time to check it out.  They will at least know what EDS is LOL and if yours is not EDS may give you a different diagnosis as well.

[wingnutt]

That would be great! Thxs Selma!

[selmaS]

  That is the way I was told to progress with this, and that many times going to the geneticist is not warranted. I would also think it is expensive to go to one....unless they feel u have the vascular type, u do not need to go .
Again, this is my understanding.....I will try and ask Rylansmom and see what she was told.

[wingnutt]

That's a very valid point. Maybe I'll cancel it and should rather call a Rheumatologist instead?

[selmaS]

  I was told not all of us need to see a geneticist....this  is new to me so I can not really suggest...Rylansmom knows a bit more as she has gone the next step and was seen....

But the geneticist is only for those that require a biopsy to see if u have the vascular type....

A rhuematoid Dr is who I was told to see, and if that Dr feels I need the biopsy then they will refer me to a geneticist....

That is the way I understand it, but I may be off base...do let me know what u find out : )

[wingnutt]

I have located a Geneticists office near me and called them for an appointment to be tested for EDS. Hopefully I'll get some answers on my own. I know my son definitely has EDS! You should see his knee's bow backwards! It's freaky!

[selmaS]

  I have to agree with u on that point, if the staff has no clue what it is or how to spell Chiari then that Dr is not a specialist for it....

The heart issues sound like an EDS issue, and as far as the scoliosis that can be tethered cord, or EDS related too.

I have all three EDS, Chiari and tethered cord, and I have mild scoliosis....if I remember correctly my Dr explained the scoliosis was from the cord being pulled down as a result of being tethered....those with EDS can also develop this as the joints are not as stable as they should be.

I know it is hard to locate a Dr for Chiari, so finding them that understand EDS is also not easy....I have yet to locate one near me...

[wingnutt]

Hi Selma! Thxs for the reply. I really do think I have EDS but, my PCP doesn't do anything to really help me out. All I get is here try this pill let me know how u do! Just had 30 day heart monitor for chest pains, having PVC's on top of the Mitral Valve Prolapse. Now have Scoliosis,wich I presume from the Chiari! I just can't seem to find a doc who's willing to do any checking out of things! Very angry and disappointed in the medical community!! I was going to make an appointment at Mass GENERAL HOSPITAL in Boston with a so called Chiari specialist! His nurse never heard of Chiari and then asked me how to spell it......! I don't think he's a specialist if his help has never heard of it?

[selmaS]

  Hi sorry to hear u r having pain....have u ruled out EDS, as it can cause joint issues, they can dislocate, sublex...etc....EDS can cause diff types of cysts to forum as well....I am not sure if the type u have could be one that may be related to EDS or not, but worth checking it out <3