rehab center didn't want to take me in, now what????

[corina]

and finally the rehab center let me know that they won't take me. when i asked them why not, the man told me that i don't have pots ?????????? i couldn't believe him and really thought i went crazy (think a lot of you know how it feels ). after telling him that my neuro diagnosed me (after my cardio thought about pots in the first place) and my pcp and pt know and why on earth they would doubt all that???

he offered me a ten week course (one day a week in a place which is a drive of an hour) and advised me to let go of my pots ideas.

i was sooooo astonished, i mean: i tell them everything about my life and they just tell me there is no pots, the symptoms i have are there because it's in my head. and i told him my neuro said that i'm his worst pots case (not that this information helped me, as i told him), but he didn't want to believe me. i think that is what hurted me most: that they didn't believe me.

of course i fought back (i can't let this happen, not for me or anyone else having pots ) and finally it seemed there was a line in a report, where a doc i saw once for about 10 minutes 2 years ago, had said that my symptoms are caused by stress (after he examined me while i was on meds).

i called my pcp to ask how that line came into his report (think he didn't like me asking that) and to immediately delete it, which he promised me. he would call the rehab center and talk to the man and call me back.

i was crying and crying and didn't know what to do. all i want is to get my life back and i need people to help me as i can't exercise or anything. i think i might call dr grubb and ask him to start a rehab center for all us potsies where we could learn how to get some life back and help eachother (and laugh together) at least we wouldn't tell others that it might be in their heads!!!!!!!!

i think it was ernie who once said: it is in my head but not in my brain (please correct me if i'm wrong here, i'm still a bit confused about everything).

do you guys have any ideas left??? please let me know.

corina

[Jacquie802]

Hi Corina,

I'm sorry about your experience. I can't believe they said you don't have POTS...HELLO, you got the test results to prove it!!!! It's one thing to have to deal with POTS, but to then be told you don't have anything wrong with you........I hope your doc figures it out for you and you can get into the rehab center to get better. Keep us updated on how you make out and what your doc says when he gets back to you. Goodluck!

Jacquie

[biatecki]

Corina,

I am so sorry that you had this happen. I`m presuming that the person you spoke to would have been the Physiatrist. I do wonder what kind of rehab you could expect from them when they are obviously so ignorant about POTS. I am a PT myself and before getting Dysautonomia I would not have had a clue how to treat it .

As you already see a PT would it not be best to continue to work with him/her?

Should you really want to persue a full rehab programme then I would suggest you get your Neuro write them a letter, get as much info as you can to gether ... Dr Grubbs new article has good basic info for uninformed docs...and flood the rehab center with facts about POTS.

Hey maybe we can start a summer camp like the DYNA kids...I`ll do the exs classes......

Margaret

[sally]

Hi Corina,

I'm confused, how can a rehab center refuse someone who has a diagnosis written in the chart by numerous doctors? Did the doctors write a referral or prescription for rehab? Why does this mans viewpoint over ride a physicians? Is this an insurance issue? I would call this man right back and tell him that he cannot over ride what your physicians have already stated and documented. He does not have the power or authority to do that, especially if he is not a physician.

That treatment by this person towards you is totally out of line. Good luck and I hope your physician can help straighten out that person and clear things up. But, I would also call to speak with who ever is in charge over there to enlighten them abit about what has happened and how you were treated by this person especially denying what your physicians has already plainly stated in your records about your diagnosis of pots and the attitude you received just because this guy doesn't believe in it. Also I would consider looking for another place if you have that available to you, as they don't seem to be educated on Pots nor want to be shown by this persons actions. Maybe send them information on pots, maybe that would help them for the future to help them understand the issue.

Best wishes,

[AJVDK]

Sorry to here what happen. I kind of understand where you are coming from after my last cardio appointment. I really agree I wish there was some where where we could go and received the treatment we need without all the problems. Well if I had the money I would build a center in the middle of the woods. It would be relaxing and have the best doctors, and treamtent. Too bad I am broke and waiting for SSDI!

Who know when that will come though.

Good Luck keep your head up! Hopfully you PCP will get somewhere when he calls.

Amy

[biatecki]

Corina,

I am so sorry that you had this happen. I`m presuming that the person you spoke to would have been the Physiatrist. I do wonder what kind of rehab you could expect from them when they are obviously so ignorant about POTS. I am a PT myself and before getting Dysautonomia I would not have had a clue how to treat it .

As you already see a PT would it not be best to continue to work with him/her?

Should you really want to persue a full rehab programme then I would suggest you get your Neuro write them a letter, get as much info as you can to gether ... Dr Grubbs new article has good basic info for uninformed docs...and flood the rehab center with facts about POTS.

Hey maybe we can start a summer camp like the DYNA kids...I`ll do the exs classes......

Margaret

[MomtoGiuliana]

This is so confusing--you poor thing--of course what can you do but cry as a first response?! How very strange that they can diagnose you just by reviewing your records. I thought an examination was necessary. Can the doctor who diagnosed you at least help you by being an advocate now to get you in to this long-term program? It sounds like you need an effective advocate at this point.

I am so sorry it has to be this hard.

Wouldn't it be wonderful if there were a POTS/dysautonomia physical therapy centre somewhere in the world? It would help people significantly disabled with this in both physical and emotional healing. What a wonderful vision.

Thinking of you.

Katherine

[morgan617]

Oh Corina, I am so sorry, and so tired of all this. Being so sick and having to defend being sick is just the worst. And they'd rather go by one sentence than a whole pile of evidence. Appalling. I wish I could help you, but as you know, I'm in about the same circumstances as you. I am just so sorry.... morgan

[Sophia3]

Corina,

I am saddened to hear of your frustration and how one comment from a doctor might have ruined this for you.

I saw a neuro ENT a few weeks ago familiar with ANS and even had Dr. Grubbs' book...and went on and on about how this is a complex illness to treat...blah, blah, blah. and had a complete change of face on my second visit. I wont go into it here.

You sometimes want to ask "are you the same doctor I saw last time??" "Did you have a lobotomy?"

He wasn't a doctor I would have to see again so I let him pontificate his "clueless opinion".

But when it RUINS a chance at rehabilitation for somebody like you, that makes me mad.

I hope you are able to get things straightened out..tie another knot in the rope and hold onto your sanity and frustration level (Easy for ME to say I know)

I just feel helpless when I read about this kind of treatment.

Do keep us posted.

Sophia

[corina]

thanks you guys, for your replies, it means so much to me.

biatecki, my pt stopped exercising with me 1,5 years ago as she felt it became to dangerous. she treats me for my bakc and neck. she is a GREAT help for me as well fysically as emotionally.

i love your dynakids camp idea, count me in for that!!!!

sally, you are right, the man was out of line, my pcp and pt told me that also. i really don't understand why, it doesn't have to do with insurance. this center was chosen because they have special programs to help you fysically and emotionally dealing with chronic illness.

morgan, i really hate to spend the energy i have on fighting the doctors and people who don't believe us. it sems sooooo useless. i'd rather spend my energy doing fun things with my family!!!

katherine, i agree a special center for us would be very helpful, wherever it would be, i would buy a ticket and fly there (of course i would want to take my family!!!!).

sophia, you are right about people (docs) changing their views, i don't understand why, but i so hate that we have to deal with them.

thanks again, for thinking for and with me, it so helps me to know that i've got all you guys, who understand. so here's to us, let's keep keeping our heads up!!!

corina

[Ernie]

Hi,

I am so sorry that you got denied on a false diagnosis. I hope that your PCP will be able to sort it out. Could you contest the decision?

[yogini]

Hi Corina,

I don't have much time to respond, but I am very sorry to hear about this. I had an incident earlier this week where I went to a doctor and he told me to go off my meds, which to me was the equivalent of "you don't have this anymore." I felt very frustrated and upset, so I can imagine how you are feeling (which is probably how I am feeling times 100!) It all comes back to the fact that none of these doctors know much about POTS, and so they try to tell us that it's not real. It's them, not you. I hope that you are able to appeal the decision. You are strong, and I am sure you will find a way to get the care that you deserve.

-Rita

[Guest tearose]

Oh Corina, these flimsy brained bimbos are in every country!!! Every field...

I am sorry that they were so ignorant and questioned your dx.

Remember, their ignorance is their problem and you should not give them any power over you!

Take back your self esteem and sit up tall and speak your mind.

You may have to speak to the administrator of the rehab center to resolve this. Let them know you want to be treated there because it is close to your home and they have to overcome the misinformation they have!

hugs, tearose

[MightyMouse]

No words of wisdom... just that I'm sad that you were turned down, and angry that it was for such a stupid reason. What a backward way of thinking... Perhaps you could send a letter of complaint to whatever government agency oversees the hospital; I know here in the U.S., each state has medical boards of review, as well as an external agency called the "Joint Commission" which accredits hospital facilities.

Again, I'm so sad for you. I hope your doctor can fix their mindset that your disorder is psychological.

I don't know if this might help YOU feel better, but you might think about printing out articles on POTS; there are many linked to DINET through the references for each section on the main site, as well as the selected research section. If it were me, I'd probably send a note saying something to the effect of their staff requiring further education in autonomic disorders and that they mistakenly labled you as having a psychological problem rather than a physical problem. I would also make sure that the things I print out are from PEER REVIEWED journals (JAMA, Lancet, American Family Physician, Neurology, Cardiology, etc.) and not just someone's personal website description.

Nina

[dizzygirl]

Corina.. I am so very sorry that the bone head that you had to deal with such ignorance!! GRRRRRRR!!

just wanted you to know that I'm thinking of you and wishing there were something that I could do to help you!!

take care dear

love and hugs

linda

[StaceyYount]

It just makes me crazy that doctors and people who are suppose to help you can look at you look at your chart and then say well you don't have this. Idiots! I so understand your frustration and I am so sorry this happened.

This was not the place for you, I was once sent to a rehab place who had no idea what POTS was and they kept trying to tell me I had anorexia nervosa and that I just needed to start eating and get up!

I wish they were the place you needed to go but it seems as if they would not have been able to help you because if they don't understand the illness they won't devise a specific plan for you. So though I am sorry you had to go through that with that stupid stupid man I am glad that you found out before you went it was probably not the best place for you to go.

As for now what, since i am in that same hole with you I have no advice but to send you many many hugs and much support and love.

[DSM3KIDZ]

Sorry I'm late to post but I wanted to tell you I'm so sorry and how frustrating it is when you have to prove your illness to everyone. Through all this I have learned to never judge people and it's just sad that the rest of the idiots out there are judging everyone!

Hang in there

Dayna

[Miriam Poorman-Knox]

I agree, IDIOTS. The thing about rehab facilities is that they usually have more ineed than resourses, so they can pick and choose what they do more of. I assume this physiatrist you saw can't buy a clue. Could you have your pcp or other Docs. call and speak direstly, then you will maybe know. Miriam

[corina]

thank you so much for your responses everyone!!! i won't name names anymore as i'm afraid i will forget someone which always makes me feel bad.

my pcp called me yesterday and told me that he had talked to the guy and explained what had happened. they still want me to forget about the pots. i really can't understand them, so i guess stacey is right: this is not the place for me. i'm thinking on how to move further now, but it will take time. in the mean time: let's enjoy life as much as we can, it can be over before we know!!!

love, corina