Welcome, Guest. Please Login
MCD - Mast Cell Disorders
  Signup for free on our forum and benefit from new features!
  HomeHelpSearchLogin  
 
Pages: 1 2 
Send Topic Print
Possible link between Ehlers Danlos Syndrome... is there one? (Read 15841 times)
Anaphylaxing
Guru
*****
Offline


Hang in there! You can
do it!
Posts: 836

Re: Possible link between Ehlers Danlos Syndrome... is there one?
Reply #15 - 10/31/11 at 10:15:52
 
I agree from personal experience with Lisa's comments about Mayo. MCAS/MCAD is not on the radar and treatment without BMB is not attempted.

I have ?EDS III, MCAD vs indolent systemic and POTS am in MN getting checked an no one has brought up possible links or having seen this before...
Back to top
 
 
IP Logged
 
Lisa
FORUM MODERATOR/ADVISOR
*******
Offline


I am not a doctor.
Posts: 1499
Volta Redonda, RJ Brazil
Re: Possible link between Ehlers Danlos Syndrome... is there one?
Reply #16 - 10/31/11 at 23:41:30
 
What is it with the Mayo Clinic?????  It seems that almost everybody I´ve spoken with who has been there in the past 4 years of talking to patients have had trouble!!    If you are not a classic case of SM they won´t catch you!!!   I think their strong point are other diseases.  

All I can say if, if you are going around in circles with your doctors and they can´t find you to be a classic cast of Systemic mastocytosis, then you need to face up to this fact and go to those authorities who are KNOWN to be INTERESTED and KNOWLEDGEABLE about MCAS!!  Within the States and Canada, that is basicly only 3 known doctors that I´m aware of, Dr. Castells, Dr. Schwartz and Dr. Afrin.  In Europe I know of only two, Dr Escribano in Spain and Dr. Molderings in Germany.  

Lisa
Back to top
 

Don´t forget, there is so much more to life than being sick!
 
IP Logged
 
issie
Rookie
*
Offline


Keep On Keepin On!
Posts: 6

Re: Possible link between Ehlers Danlos Syndrome... is there one?
Reply #17 - 11/09/11 at 07:09:48
 
Got back from my Mayo visit.  He had read  most all the information that I sent to him from what was e-mailed to me and also had looked at some of our conversations in regard to what is being done for us.  He corrected me in my statement about the immediate testing and not wanting to do it because of needing to take the antihistamines.  He said to go ahead and take the antihistamines - it won't interfere with the test.  He wants to catch me in a flare and see what the mast cell levels go up to from my baseline.  He said if its a significant rise than we would say its mast cell related and go from there.  Until we know that these flares are increasing mast cells in the blood - because they are usually in the bone marrow - we can't say for sure that its a mast cell activation disorder.  That makes sense to me.  So, the next bad one - I'll be off to the hospital for the blood draw and the 24 hour urine test.

Because I don't want to take the pneumonia vaccine challenge to check out my immune system response.  He is going to just check my IGG and other levels like that every 6 months for awhile and see what is happening there.  If it's still dropping, going up etc.  Sounds like a good plan to me.

I also was able to talk with him about POTS and the research that is being done in regard to the different subsets.  Us with HyperPOTS, very possibly have low NO (nitric oxide) this can also affect mast cell issues.  Seems to be a connection there.  Trying to get the pieces put together.

He has a pile of information from me and is reading it.  So, feel very hopeful.  He is at the AZ - Mayo.  His name is Dr. Lewis - in the allergy dept.
Back to top
 
 
IP Logged
 
Pages: 1 2 
Send Topic Print