AJVDK Posted July 21, 2006 Report Share Posted July 21, 2006 Hello Everyone, Well today had to doctor appointments the first one was with my EP and it didn?t go well at all. It as though he is stuck with me, due to everything he has done, and he?s the one that placed the pacer, but he doesn?t want to do anything. I talk to him today about IV treatment as little has helped, and he was like what am I going to do have you come here and do the treatments here? I am going to have to look into it and talk to your other doctors. Then I asked him about the fact that after 7 months of not working things are still not getting better and asked what he thought about how things are going to go. He said well I think you need to see Dr. Grubb. I said last time I thought his waiting list was so long g it was like al least 6-9 month to get in, he said well we should get you on the list as I don?t think anything?s going to change. ( ok I would like a little hope) I am so tried of getting no hope from doctors. I feel like my EP doctor has given up on me. I asked him about my SSDI, as before he has not helped much, he said have my lawyer call him and let them know what they need from him ( this is good for me, but he was the only one with hope things where going to get better. When I left this appointment today I felt more confused and more helpless then I ever have. I feel like giving up the hope of getting better, but then another part of me thinks there has to be something else out there for me.Then this afternoon I had an appointment with my family doctor, and expressed my concerns about everything, from really wanting to try IV fluids to see if it will help, we talked about my migraines and how they are not getting better, he gave me a new med to try. Also they drew blood and are doing a lyme?s disease test to see if I have lymes. I will get the results back on Monday. My doctor and I both are hoping the results come back positive. We said if they do we will start treatment on Tuesday. If not I am going to get my next procrit injection, and talk about IV treatment. Also we talk about the letter I got from Cleveland talking about doing 3 months of physical therapy at home to help build my muscles, my doctor said that I am not ready for this, and called the doctor there to express how bad things have gotten, and that he feels I am not ready for physical therapy. So I am not sure what to think.Part of me is hoping that my lymes test will come back positive, and that will be the answers to why I been so sick. But I don?t want to get my hopes up as it is a shot in the dark at this point. I know that there is more then just POTS/ NCS going on its just find out what. My family doctor told me not to give up hope and that we will get to the bottom of this but after 6 years of fighting, I am tired, I am a fighter, and will keep fighting, but I really need a break. ( Is that to much to ask for?)Sorry for venting, just had a really bad day!Amy Quote Link to comment Share on other sites More sharing options...
bttrflyamby1981 Posted July 21, 2006 Report Share Posted July 21, 2006 Vent all you want! I'm sorry you feel so confused, and I hope you find some relief soon!Take care,Amber Quote Link to comment Share on other sites More sharing options...
mom4cem Posted July 21, 2006 Report Share Posted July 21, 2006 Sorry about your visit to the ep. It sounds though that your family doc has not given up hope, and will keep working with you to find the right treatment. That is very hopeful.Hang in there Quote Link to comment Share on other sites More sharing options...
desiree942 Posted July 21, 2006 Report Share Posted July 21, 2006 Dr. Grubb was scheduling for March 2007 when I was there but the time does pass and you can always call periodically and ask if they have cancellations. Maybe you could get on the list, you can always cancel later if things change. My appointment actually got moved UP six weeks because he was going on vacation. Quote Link to comment Share on other sites More sharing options...
AJVDK Posted July 21, 2006 Author Report Share Posted July 21, 2006 Thanks for the support. I feel alittle better today. I got so much need sleep last night, and am trying to stay postive! I am going to tell the doctors to go ahead to get the referal to Dr. Grubb. At least then I have it if things do not get better! Amy Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted July 21, 2006 Report Share Posted July 21, 2006 You don't need a referral to make your appointment--although your insurance may require that you have one when you get to his office.Nina Quote Link to comment Share on other sites More sharing options...
AJVDK Posted July 21, 2006 Author Report Share Posted July 21, 2006 Nina,For BCBS to pay I need a referal for out of state. ( I need them to pay, but they way it looks we is in the network so it will be 80/20 which it nice) So even thought I need to wait for the referal, its ok to get the insurance to pay! But thanks for letting me know!Amy Quote Link to comment Share on other sites More sharing options...
Jacquie802 Posted July 21, 2006 Report Share Posted July 21, 2006 Amy,Sorry about the apptmt with your EP/Cardio, however, I'm glad your PCP is still behind you 100%. Jacquie Quote Link to comment Share on other sites More sharing options...
Patricia Gallup Posted July 22, 2006 Report Share Posted July 22, 2006 I want to clarify that I am almost positive a referral is NOW necessary to see Dr. Grubb. NOT an insurance referall (which many do also need) but some evidence from your doctor that you do indeed have suspected dysautonomia or a diagnosis that is worth his time to see you. This has been in place since he got back to work last year and had to reschedule some 500 patients in addition to his regular patients, and new ones trying to get in.With regards to hope and honesty, I personally would rather a doctor be honest with myself and my family instead of filling us with false hope, to my knowledge no one with a confirmed POTS diagnosis is told that treatments will be a definite cure, unless they wanted to be sued. To be frank I don't believe people should set goals of "getting better" or "getting their life back." I always wonder what that means because I believe the life we are living is what hand we've been dealt, so what is there to go BACK to? We ARE living OUR LIFE right now. I guess I've just learned to accept my life is lived with illness, and should one day out of the blue I get "better" than I'm blessed, until then I'm sick and I should probably learn to live within the limits my body needs. I just don't believe "hope" is an area a dysautonomia doctor should dwell on. Dr. Grubb will most likely talk to you about finding a "new normal" and let you know that your old normal will probably never exist again unless your reason for POTS has a cure. So if you don't like hearing that from your currect doc, Dr. Grubb will probably be no different, as he's very realistic. I digress, I also wonder why a doctor would not suggest physical therapy, as far as I've read ONE person on this site with seemingly undiagnosed issues has not been able to complete therapy. How could exercise done with the RIGHT therapist who knows about dysautonomia, at the RIGHT PACE not be a place to attempt improving yourself? I'm curious as to why he believes "you are not ready for PT" when the whole goal of PT or OT for the chronically ill is learning to do basic activities, with a chance of improvement, and to build muscle mass instead of stagnating and deteriorating your body?I guess we've just never looked at the medical community for cures, we definiely use the guidance of Dr. Grubb but he's a large proponent of the POTS basics and helping yourself when even the meds don't work and not trying to be your former self. I'd imagine since he advocates for swimming and PT so much, he'd be baffled why your doctor said no to PT as well? Good luck to you. Quote Link to comment Share on other sites More sharing options...
AJVDK Posted July 22, 2006 Author Report Share Posted July 22, 2006 Patricia,Thanks for the reply. I am still wanting to know to about the PT. My understanding is he said the PT order was too much for me. He said to do leg lifts, and things I can do in bed. I was doing PT for my neck/ headaches and he pulled me out, as he thinks there is somthing else going on. He told me to push myself around the house, but that he wanted somthing else other then the PT order from Cleveland at this point to help get me up and going again. He is more upset that he refered me to cleveland. I went out got the DX of POTS, low blood volume, and rapid blood flow, and then they send you home. There follow up has been really bad it took 3 1/2 week to get the 3 months of P.T. As for the meds they still havn't got back to him. So there alot going on. Thats why my family doctor want to refer me to Grubb, as he know for getting to the bottom of whats going on. ( But I worry the follow up is going to be the same as Grubb is busier then Cleveland.) Who know's let hope I will have a better day with my doctor appoitment in tuesday! I turst my family doctor, he turly wants things to improve. I just want to know if thet are not!Talk to you later! Amy Quote Link to comment Share on other sites More sharing options...
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