Overwhelmed and at a loss

[jkhomer]

My husband and I will be flying to Boston this week to have a full autonomic work up for him.  He has been struggling for some time with many of the symptoms I see described here.  Perhaps I don't have a right to post here in that I do not suffer from this disorder, but thought who better to help me navigate supporting my husband through this than those of you. Currently they have said that after having the TTT he does have dysautonomia, however I suppose we will being finding out what type and how severe it is.  At one point they discussed the possibility of MSA, however now we think he is too young to have that.  He is 47.

[acrobatic]

Hi nervous 74,A long time since 2011 but wondered what type of dysautonomia your husband was diagnosed with.I am in Australia and do not know what tests Dr freeman did .
I came down with chronic fatigue 12 year ago now dx with dysautonomia but not tested for subsets.cheers

[Nervous74]

Just wanted to let you know that Dr.Roy Freeman out of Beth Isreal Deaconess Hospital in Boston is a specialist for dysautonomia.  He has his own autonomic lab where he does testing, not just the tilt table.  I am seeing multiple doctors out of Mass General Hospital for mysterious illness and they sent me to see him.  I have been very happy there.  I did have a positive Tilt Table test for POTS, but I am still having fevers and few other symptoms which are even puzzling them.  At least I have some answers now.  Anyways his collegue Dr. Hovaguimian has been wonderful.  She spends the majority of the time with you and my husband and I really liked her...not lots of time with Dr. Freeman in the room, but he is overall in charge of your case.  I am new, but have had 3 appointments since mid November and multiple phone conversations.  They have been very supportive, even with me not being a clear case.  Hope this helps.  It think there may be a physician out of Boston Medical too, but I didn't research there.
To jkhomer:  Hope your husbands appointment went well!

[lucy189]

I hope your husband's appt went well and that you were able to get some answers and help.  If you feel it is appropriate, could you let me know who your husband saw in Boston and if it went well?  We live in Vermont and I am trying to figure out if I should take my son out of state for care.  We have been struggling for help here and have almost run out of options.  There is an ANS specialist locally, but he only sees adults and we do not have an answer yet as to if he will see my 16 year old.

Good luck to your husband and to you as well.

[laurab2818]

Hope your husband's evaluation goes well.  This site has been really helpful for me.  Keep us posted on how your husband is doing.

Laura

[laurab2818]

So is Dr. Freeman a dysautonomia specialist?  

[Nervous74]

I hope your husbands appointment offered some help for both of you.  I was wondering who you are seeing in Boston... I live in the boston area and am under the care of Dr. Freeman at Beth Isreal hospital.  He and his colleague have been very helpful and informative.   I am newly diagnosed with POTS and have lots of questions and they have been great.   I still have something mysterious going on b/c all my symptoms are not matching up exactly, so we are still working.  They are making sure that my other doctors don't relate everything to dysautonomia.  Its difficult journey and can be overwhelming.  I have found this site extremely helpful.
Good luck to you and your husband!
Maryann

[CHRISTYDRAKE]

You have every right to post here, trying to help your husband.  I post all the time, and I don't have any of these issues, but my son does.  Since my son, your husband are sick, it helps if they have some one helping them, advocating for them.  I respond and ask questions in regards to my sons symptoms and what has helped, etc....

I hope your husband is able to get the help he needs in Boston.

Christy