Really Disappointed with Doctor!

[ethansmom]

I have been having problems with my doctor for about a year now, but lately it has gotten ridiculous. He diagnosed my POTS and has been treating me for 2.5 years, and I am thankful that he was there and helped me when I was so sick- he was so compassionate and caring and bent over backwards for me all the time. He even offered me a job and I was working for him part time for a while, which made it easier to access him when I had a question or issue. BUT now I'm not working there anymore (see previous post from April, they just up and closed the office I was working in one day out of the blue). So I am having the hardest time getting ahold of him now. I went for an office visit 2 weeks ago, and when I drove an hour to get there, he wasn't even in the office that day and no one bothered to call me and let me know! So I had the other doctor he works with (who doesn't even treat POTS) order some bloodwork on me, and the Epstein-Barr test came back positive which *could* explain why I've been sleeping all day lately and feeling just awful- and I couldn't wait to discuss the results with him because it's another avenue we haven't explored. But I put in phone call after phone call and he never bothered to call me back- and yesterday I called my friend that I used to work with there and explained the situation, and she put the test results in front of him along with my phone number 5 times that day and he STILL never called me. Instead, he had her call me back at the end of the day to tell me to increase my Florinef if I am feeling bad, and that the test probably meant nothing but the fact that I might've been exposed to EBV at some point in my life. I know that could be true, but I was also hoping he would care a little more than that and possibly do more bloodwork or testing just so we might know more about how I contracted POTS and look into Chronic Fatigue a bit more.

I was livid, because if he took the time to look over my chart and stuff, he would know that I cannot tolerate any higher of a dose of Florinef than what I am taking already, and that I've been having these viral flare-ups on a regular basis and would like some answers. He just acts like I have to deal with this and we'll never know why I have it and Florinef is the only answer for everything.

I have no options at this point as far as doctors are concerned because I have no insurance, and this doc treats me for free. I thought about seeing Dr. Khurana in Baltimore, but I've heard that he won't treat anything without repeating all the tests- which would cost me a fortune that I don't have. SOOO...I just wanted to vent about how stuck I am right now, and how awful I am feeling every day. I could sleep 12-15 hours and still be too tired to move. And I am so dizzy/lightheaded that I can't even stand to go in stores or anything...and I was doing so well for over a year, I just don't understand what is going on, and it's been a solid month of this with NO good days. I am down in Florida right now, and I can't even go to the beach or play outside with my son...this really bites. My parents are taking him on his first zoo trip tomorrow....and guess who gets to miss it?

Thanks for listening to my ranting everyone...any suggestions would be appreciated

[morgan617]

wow jessica, so sorry about all this! if you read my post i'm pretty fed up too. but it makes you wonder what's going on with him that he has suddenly changed so much. is he taking on new patients and becoming too busy to deal with the ones he already has? some docs never know when to say enough. sorry about your vacation too. i only get out about once a week on average, so know how frustrated you must be. and it really bites, having no insurance. if that's his problem, then he bites. sorry i can't help you more but can certainly sympathize! hope ypu get over this bad spell soon. morgan

[Merrill]

Oh, Jessica, your post makes me so sad!!! I'm so sorry you've been having such a hard time lately--I didn't realize it had gotten so bad! I was thinking the same thing Morgan was about possible reasons for your doctor's change in behavior ... but knowing the causes doesn't help so much if the effects are the same!

Hey, I just wrote that last sentence as I was thinking about your doctor and why you're having so much trouble getting in to see him. But as soon as I typed the exclamation point I realized that the same could be said for what's going on for you physically. You sound eager to find out how you contracted POTS ... With many symptoms, I think, if you find the cause you can begin the cure. But with autonomic nervous system problems, it seems like you can just WAIT and treat the symptoms as best you can. There's nothing I can do, for example, to make the veins in my legs constrict when I stand! So I do the basics, wear compression hose, drink a ton, keep electrolytes up, and salt my food like crazy. It helps some, and some days are more exhausting than others.

I guess all this is to say ... Take care of yourself as best you can these days, and have faith that your situation will improve. Sleep when you need to, let others help as much as they can, and do all those medical (florinef--the dose you tolerate) and low tech things you can to help ease your way. (If you're sleeping at ton, you may be more dehydrated than if you were up and moving and drinking every step of the way.)

(Any chance someone can push you in a rented wheelchair at the zoo tomorrow? I know how much you want to be there with your son and family...)

Be well, stay cool, and I hope you feel better soon.

Merrill

[futurehope]

Jessica, Maybe you could find a doctor on www.cfids.org who specializes in chronic fatigue or fibromyalgia in your area and they would listen?

[Jersey Girl]

Maybe you could have your medical records sent to either Vanderbilt Clinic-Dr. Robertson or NIH-Dr. Goldstein to see if you qualify for any of their free clinical studies. I felt emotionally better (reassured?) after seeing Dr. Goldstein, even though he didn't offer up much. (I haven't responded well to any of the medications that were prescribed--most of them made my symptoms worse.)

[briarrose]

It's true about the EBV. They say that 95% of adults have been infected. I think they can do a mono test, IGG and IGM.

I'm sorry I don't have much else to offer. Hang in there and think about applying for a research study. At least you'll get free medical testing.

steph

[morgan617]

if you are a student and work part time and have a son, do you qualify for medical coupons? my grandkids and daughter in law have them because my son's income is low enough to meet the standards. you might try that. morgan

[ethansmom]

I'm not familiar with medical coupons? Any info would be helpful, although the problem is always that our income is too high for us to qualify for assistance (yet not high enough to be able to afford health care with no insurance, that's for sure!!). I bet I'm not the only one that has this problem...but we plow through it anyhow

[EarthMother]

Sorry you missed the zoo trip. I know how much I've missed the zoo with my kids as I have been living through this medical zoo safari. I know you must wish you could just get out of this jungle and back to some semblance or normalcy.

I find with some doctors even ones that were wonderful for many years, that it becomes time to move on. Seek out new faces and other healing paths. On my journey I have found wonderful healers among them have been accupuncturists, chiropractors, massage therapists and even a pranic healer.

When money is tight (and when isn't it) I stock up on healing books. There are wonderful healing stories out there .... one day yours will be among them! Remember the wisdom inside your own body. It can and will heal -- even if and when the doctors don't return our calls.

Keep the faith,

EM

[ethansmom]

Thanks EM for the wonderful words, as always

My parents ended up deciding NOT to go to the zoo, so I was very relieved this time Ethan isn't old enough yet (at 17 months) to really know that he's missing anything, but I do worry about what it'll be like later on. I'm just plugging along, doing my best! I'm still on vacation and mostly we've just been relaxing and napping a lot, catching up on rest and being laid back- but later this week we've got some exerting activities planned, so I'm hoping to be along for the beach trip tomorrow and a concert on Saturday...then we have a family reunion Sunday and I fly home with the baby on Monday...whew!! I have a pedicure Thursday which will be AWESOME but everything else is going to be tiring, I know. I decreased my Florinef 2 days ago, and am only taking Pro-Amatine as needed and I actually feel much better- not great, but am sleeping less and functioning more. So we'll see what happens....