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New Cardio Specialist GRRRRRRR


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Hi All,

I went to the appointment I have been waiting for for months with a cardio specialist. It was a waste of time. She told me I could go back to work and wrote restrictions, no lifting, breaks every three hours.( Im sure my patients would love to see me crawling around on the floor vomiting. ) Thats it. And she gave me a RX for Lasix. (does she want to kill me, my bp was 86/54 and ive lost 10 more pounds). Im so upset.

I am currently on short term disability but my family doc doesnt do long term, the only truely understanding doc I have seen, a pediatric cardiologist who knows POTS and Dr Grubb, doesnt do disability at all. Im running out of time on my leave from work. I have to get a doc to do the long term before I get fired so I can keep my private long term disability benefits.

So the search is on, gotta find a doc to do my long term disability b4 I wind up living in a tent.

Anyone been through this? Any suggestions?

Thanks and Peace

Janine :)

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I am so sorry. I wish I could offer you some better feedback but I know little about short and longterm disability through private insurance. However, I have just complete the SSD process with the US government. It has taken almost two years but FINALLY my disability has been approved and my benefits will kick in any day. (I will also receive about two years of back payments). So, my advice is if you live in the US go ahead and apply for SSD since you have a work history and the process can take several months to hear an initial determination. I will be glad to give you more information about this process if you are interested.

Carmen

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I'm so sorry you had this experience!!!

Did the Dr say why she felt you could return to work?

The only thing I can say is look for another Dr and in the meantime, if you have to return to work keep track of EVERYTHING. How you function, what symptoms you have, if they get worse how they get worse and how it affects your ability to do your job. You could also contact JAN (Job accomdation network) to see if they can offer any assistance with how to deal with your employer with a disability.

Keep us posted!!

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Thanks fo the support Carmen,

How did you get the medical necessity for disability? Was it hard to get? Thats basically what I need. i hae all the tests and documentation. I just need to find out what doc to go to that does the disability paperwork.

I hope your check comes soon!!!!

Peace

Janine :)

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Thanks Pooh,

She told me she didnt have enough info to justify continuing my short term disability. Obviously she didnt get all my med records because my chart was way too thin. ( I used to hae every copy of every med document, test ect... but when I went to Duke they took the pile to copy and i didnt get it back).

Im calling my family doc who originally wrote me out of work in the morning. Im going to ask her to extend my leave, do the paperwork etc.. for short term since it was her offices fault my med records didnt get there.

As far as long term goes, I need to find a doc who does it for both private disability and social security. I have no clue who to go to.

Thanks

Janine

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How much time do you have left for short-term leave?

Do you have another cardiologist or a neurologist you could go to? Try to take all your records and also maybe you could print some articles off the web about Dysautonomia to take as well.

I think it's harder to keep private disability benefits than SS (that is once you get on SS disability). I've gone through the process of both and am currently receiving benefits from both.

SS is a lengthy process but it is one I would also recommend you start. Be very detailed and specific when you fill out their daily living questionaire and how your symptoms impact your ability to do daily tasks (both at work and at home).

If you don't already have a neurologist maybe you could look for one in your area that specializes in MS. I say this because they tend to have more experience with unusual symptoms and may understand how this impacts your ability to work better than the "average" Dr (even better than the "average Neurologist).

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You can go to the Social Security website and fill out an application online. You don't necessarily have to have a doctor complete "forms" per se. You will have to have all your medical records forwarded to Social Security. I urge you to get this process started ASAP because it is a long and tedious process. Make sure Social Security has all your info. My cardiological records were missing from my appication (despite several requests to the Dr.'s office) and I was initially turned down. However,when my doctor asked me about how my disability process was going I told him what had happened and that I had appealed the decision. He graciously wrote a letter on my behalf with my diagnoses listed and stated point blank that gainful employment was impossible for me. The appeal process takes about a year and my hearing was this past April. The judge and the doctor for soc.sec. (they use their own to have an "outside" opinion with your regular doctors opinions). agreed that I was definitely disabled and had been since January of 2003. They made this determination because I had a terrible tilt table in which my blood pressure was neither audible or palpable (sp?). My diagnoses that Soc. Sec. found severe were as follows: MVP, dysautonomia, and NCS. Now, having said this, it is hard for dysautonomia patients to get disability but more and more doctors are seeing how debilitating the disease can be. Please note that I am on approxiamtely 12 hours of iv's a day so my situation is not typical. So, I would certainly go ahead and apply but there are no guarantees for anyone. But, if you don't apply you definitely won't get it- so, good luck!

Carmen

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Janine, MomtoGuilliana posted a bunch of resources on disability issues several months ago. Here's an excerpt:

"...disability paperwork issue is also discussed in the below thread already--

http://dinet.ipbhost.com/index.php?act=ST&f=1&t=2070

I definitely understand the frustration and the hurt regarding apparent lack of compassion from doctors who have devoted their lives to understanding ANS conditions. Morgan, I agree, it is nothing short of devastating not be be validated, especially when it is regarding a condition that has so affected your life. On top of it, it is an uphill battle for many to get disability.

There are also other discussions on here on the topic of successfully obtaining disability benefits. These are some of the most recent ones:

http://dinet.ipbhost.com/index.php?act=ST&f=1&t=2057

http://dinet.ipbhost.com/index.php?act=ST&f=1&t=2017

http://dinet.ipbhost.com/index.php?act=ST&f=1&t=2025

Also--from the general info posting by Nina recently:

Sites with information on disability advocacy, disability law, getting through the process of applying for disability benefits

http://www.disabilitysecrets.com/administr...-law-judge.html

http://www2.rpa.net/~lrandall/disabled.html

http://www.ssa.gov/disability/professionals/publications.htm

http://fmscommunity.org/disability.htm

http://www.disabilityfacts.com/resources/outline.html

http://pbcers.org/SSD-ALL.htm

Katherine"

Good luck! Also, you might want to see if you can get a complete copy your info from Duke to refill your files.

nina

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Thanks All,

Ugh, just dealing with getting up in the morning and getting my pills down is hard these days. Now I have to fight with insurance companies and the government.

The greatest thing about this site is that you all are so helpful with the info. TYVM!!

The second greatest is that when I have a really weird symptom I can come on to this message board and find someone with something weirder. and then I dont feel so bad.

Its a double Klonopin night for me, maybe Ill sleep for more than 4 hours.

Night All, and thanks.

Peace

Janine

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Janine -

Many have already offered good info, but have you been given a reason that your family doc "doesn't do" long term disability? I guess that confuses me if it's your original/primary doc as for me it largely consisted of the doc sending more records to the disability folks with a simple form continued similar to the STD form(s). I realize that all situations are different, and I have had a lot of specialists involved, but my primary has done all the forwarding (with a bit of "encouragement") b/c there's no way all the individual specialists could be kept track of. The whole system is frustrating & exhausting though...since January I have only gotten one check on time & still have yet to see the one that should have been issued a week and a half ago despite the fact that I've been approved through the end of August (for LTD). And when it's most exhausting is when you have the least energy to deal with it...dealing with everything in terms of docs, records, insurance, etc. is seriously a full time job for me some days...luckily at least I can lay down while I'm on hold. ugh. I do agree, from my reading & research, that while it seems harder to initially get on SSDI it seems easier to stay on it...not necessarily forever but rather than the "reviews" are much less frequent. I'm currently applying for SSDI (somewhat halfheartedly) b/c I'm required to by my LTD folks. Good luck - both with with the disability piece & the doctors. I'm sorry the doc you saw today was so unhelpful & in a way harmful...as frustrating as it is I do appreciate it when a doc that doesn't have a clue at least admits such rather than trying to pretend he/she does.

Hang in there & let us know how things proceed,

:-)melissa

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Thanks all,

VERY good info! It helps a lot. I found a neurologist through my original cardiologist who will see me (has already reviewed my records). Of course he is out of my insurance network and wants $600.00 up front. I will have to file and get back %60 of whatever my insurance company feels is customary and reasonable [HAHA $2.00!! :-) ]

Sadly, I am selling my husbands horse to catch up on some bills and pay the neuro fee. He doesnt ride her much but we had her so long she is my sweety. They would have to kill me to take my horse away even if I cant ride, she is my friend and one of the few things I can still enjoy is sitting in the shade brushing her and talking to her.

I started the online SSI form, have to carefully word it because they only give you a 500 character limit to type how it affects your daily life. I also called everywhere I have ever been (medically) and requested that my records be sent to me.

My family doc extended my short term until Aug 1st. So I need to get it together quick.

You know anxiety is part of the progression of this disorder, then having episodes where you feel like you are going to die adds to it, then to top it all off you have to worry about surviving. .......Klonopin anyone?

Thanks for the support ALL of you.

Peace

Janine :unsure:

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Janine,

I don't know what to say....it really stinks when you have to sell and give up the things that bring you enjoyment and the things you've worked so hard for in your life! I've had to give up my job, my car and my house has been on the market for a year and still hasn't sold. (It's a really cute house but the resale market in this area is awful!).

It's good that you have requested all of the records be sent to you. I would stay on them about it and also, one thing that helped me a lot was I gave them 2 weeks and told them I would be by to pick them up and gave them the date I would be by to pick them up. Then, I made two copies of everything and sent a registered/return receipt copy to SS and one to my LTD and I kept the originals.

Good luck! I hope you can find some way to keep the horse!!

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Poohbear is right - make copies of those records! I made 6 copies of mine and Hubby's (he had a head injury and I was struggling with NCS so we were both going after SSDI at the same time!). That way everytime we got kicked out to a new doctor or agency I had copies readily available. I am still fighting with LTD. They sent a form to a doctor I had never seen and he signed that I was OK to go back to work. LTD cut off my benefits and I have been struggling for 2 years trying to get them back.

If your doctor doesn't want to help with your disability claims then be sure to document everything. Print out info here that points out that Lasix would be an inappropriate med for someone who already has low blood pressure and a fluid deficit. That should at least damage the credibility of a doctor who does that then says you can work.

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Hello again -

just wanted to post en empathy post for the SSDI application...the 500 letter thing is super-annoying, eh? and then it gives you loads of space for other things, like the side effect of a single med has more than double that! anyway, i just finished my online app today & in all spent a total of at least 12 hours on it... not all today!)...almost unbelievable. and to think that it's the same thing that one can also do in a 1-2 hour phone or in person appointment...even crazier. anyway, good luck with things. and i'm sorry about the horse:-( my aunt has horses & i used to ride a lot so know how attached i was to the horses.

:-)melissa

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