Be Still Posted May 26, 2006 Report Share Posted May 26, 2006 In complying with the rules of this site, I will say that I had a very negative experience with Dr. Grubb?s office.My initial experience was positive and I had great hope for a good relationship with him and his staff. I believe Dr. Grubb to be a warm, receptive and insightful doctor, well versed in autonomic difficulties. Unfortunately, my experience since has been fraught with communication difficulties that have proved frustrating.Today I was devastated to learn that I will be receiving NO assistance from their office with my SSDI claim and my hearing is coming up on Wednesday. This was the main reason I made the effort to go to Dr. Grubb?s. Apparently, office policy has changed since my first visit and I have discovered the details of this only today, too late for me to comply with what might have assisted me.My lawyer?s office seems undaunted by this turn of events and has tried to console me, for which I extremely grateful. Nevertheless, I have been waiting 3.5 years and it has been a long, tedious process, I am eager for it to be over. Quote Link to comment Share on other sites More sharing options...
joiedevivre516 Posted May 26, 2006 Report Share Posted May 26, 2006 I'm sorry you're having trouble! I think one thing it's important to remember is that sometimes doctors have to implement policies that are hard for their patients to understand because of their own legal or professional problems. I know of doctors offices who have encountered major trouble in dealing with SSDI claims. It's awful that you weren't told about this until today, though - I hope everything goes really well with your lawyer and your case!I've encountered so many negative doctors that it's become such a treat to just find someone who's warm, like you say Dr. Grubb is! Hopefully he can work out the staff situation! Quote Link to comment Share on other sites More sharing options...
Guest tearose Posted May 26, 2006 Report Share Posted May 26, 2006 Oh no, I am so sorry!It is devastating to learn this so close to your hearing.I am relieved to hear that the lawyer isn't setback by this.I am always disappointed when I learned some in the medical field are unwilling to support some of our POTS population! I think part of the problem is that dysautonomia is not always "recognized" or "respected" as a serious problem. Even the experts seem confused sometimes! This is a fairly new syndrome/disease process and I think the real ramifications and process will be understood in the next ten years. (Like MS took a long time to gain understanding)Because I felt my problems were all physiologically based, I never allowed myself to get "depression" as a dx although some people here do and get approval for disability on that basis. If you have ever had this dx, it may serve to help you. I am sure your lawyer has all this under control.Keep up your spirits.best regards, tearose Quote Link to comment Share on other sites More sharing options...
AJVDK Posted May 26, 2006 Report Share Posted May 26, 2006 I just wanted to drop a line and say I am sorry to hear about everything with Dr. Grubb! I wanted to wish you the best with The SSDI hearing. I understand everything with SSDI, I am waiting on my letter in the mail right now! I hope all goes well!Amy Quote Link to comment Share on other sites More sharing options...
Jacquie802 Posted May 26, 2006 Report Share Posted May 26, 2006 Hi, I wanted to wish you good luck with your SSDI Wednesday. Let's us know how you make out, when you find out. Jacquie Quote Link to comment Share on other sites More sharing options...
Be Still Posted May 26, 2006 Author Report Share Posted May 26, 2006 Thank you everybody, for your thoughtful replies. I was devastated, but I'm focusing on the positive.I'll let you know how it goes. It feels so momentous, as if you will either finally receive the validation you deserve or will be crushed by more disbelief, invalidation and defeat. It's a very vulnerable time. I have a lot of faith in my lawyer, and that is comforting.Thanks for your support. Quote Link to comment Share on other sites More sharing options...
morgan617 Posted May 26, 2006 Report Share Posted May 26, 2006 One thing to remember is that POTS is NOT recognized by ssdi as a valid reason to receive disability. That can really tie some doctor's hands so to speak, if that's the only thing you are seeing them for.I think the people that get disability usually get it for another health problem. I'm sure mine was for meneires or major deprssion and OCD, as opposed to my pots.Since my pcp helps with all these problems, it made the process easier for me. Even he was pessimistic I would get it with all my other health problems, but some of them are listed as criteria for receiving benefits.Some people are not understanding that until it is officially listed as a criteria, and who knows when that will be, it will not work for getting help. It's so disabling, it boggles the mind that they can't see this, but that's the way of it at this time.It's can also be fairly time consuming for the doctor, so many don't want to deal with it. Sad, but true.I'm sorry this has happened be still but will pray your lawyers are good and you get what you need, and quickly. morgan Quote Link to comment Share on other sites More sharing options...
bttrflyamby1981 Posted May 26, 2006 Report Share Posted May 26, 2006 I'm sooo sorry your dealing with all this!! I wish you luck and send you a very very big ((((hug))))Amber Quote Link to comment Share on other sites More sharing options...
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