Guys I don't know what to do(job related)

[Derek1987]

So I've been on short term disability since September. They stopped it December 12th. For no reason other than that was when I got my brain MRI results and that was the last test done by my autonomic dysfunction specialist. I did a tilt table, 24 hour urine, blood test, and a brain MRI with my autonomic dysfunction specialist. I did all of this within a course of a month.

 

They found I've been exposed to Rocky mountain. My specialist said it messed up my nervous system. My heart rate jumps up 50BPM plus 100 percent of the time upon standing. Verified by the TTT and my own tests. I am taking Mestinon now to help that.

I asked my specialist when I would be able to return to work through their online portal. She said it depends on how I respond to treatment and going over the test results the next time I see her. I actually sent that screenshot to my disability  insurance company. My next appointment isn't until February. 

Here's where the problem came in. My disability insurance company contacted my specialist. My specialist said she never took me off of work and she gave me no restrictions. Although during my visit I was concerned about returning to work and not losing my job. She said don't worry about it. She told me not to even drive. Thats a restriction technically right there. So now the disability company is making it impossible for me to get approved even though they saw what the doctor said on the online portal. In my eyes that's technically a medical document.

 

The off work restrictions started with my primary care doctor then continued with my cardiologist but for some reason my autonomic dysfunction specialist won't vouch for me. She said its in the hands of my primary care doctor. So my primary care doctor wrote a note saying my autonomic dysfunction specialist has me off until I see her again. I sent the letter to the disability company and they told me that's not enough information to support my claim. They want restrictions from every single doctor I go to. The problem is not all doctors give restrictions. My cardiologist said they can only cover me for the time up until I saw the autonomic dysfunction specialist. My autonomic dysfunction specialist won't do restrictions period. The nurse for my primary care doctor says all she can put on the note is what my specialist said. 

 

My last effort with my primary care doctor is to ask if she will write me a restrictions letter. But it seems like they aren't interested in doing that. It's as if doctors are scared to vouch for me. 

 

So it's either I go back to work sick and probably end up quitting because I can't handle it. Or get fired. I have a family to take care of. My wife is actually disabled from bone/nerve diseases. She was approved by the judge November 7th so we are still waiting on that. That's a positive but we literally have no income. It looks like I'm gonna have to go back to work and see how long I last. I stand on my feet the whole day. Man I am stressed.

 

[StayAtHomeMom]

22 minutes ago, Derek1987 said:

So I've been on short term disability since September. They stopped it December 12th. For no reason other than that was when I got my brain MRI results and that was the last test done by my autonomic dysfunction specialist. I did a tilt table, 24 hour urine, blood test, and a brain MRI with my autonomic dysfunction specialist. I did all of this within a course of a month.

 

They found I've been exposed to Rocky mountain. My specialist said it messed up my nervous system. My heart rate jumps up 50BPM plus 100 percent of the time upon standing. Verified by the TTT and my own tests. I am taking Mestinon now to help that.

I asked my specialist when I would be able to return to work through their online portal. She said it depends on how I respond to treatment and going over the test results the next time I see her. I actually sent that screenshot to my disability  insurance company. My next appointment isn't until February. 

Here's where the problem came in. My disability insurance company contacted my specialist. My specialist said she never took me off of work and she gave me no restrictions. Although during my visit I was concerned about returning to work and not losing my job. She said don't worry about it. She told me not to even drive. Thats a restriction technically right there. So now the disability company is making it impossible for me to get approved even though they saw what the doctor said on the online portal. In my eyes that's technically a medical document.

 

The off work restrictions started with my primary care doctor then continued with my cardiologist but for some reason my autonomic dysfunction specialist won't vouch for me. She said its in the hands of my primary care doctor. So my primary care doctor wrote a note saying my autonomic dysfunction specialist has me off until I see her again. I sent the letter to the disability company and they told me that's not enough information to support my claim. They want restrictions from every single doctor I go to. The problem is not all doctors give restrictions. My cardiologist said they can only cover me for the time up until I saw the autonomic dysfunction specialist. My autonomic dysfunction specialist won't do restrictions period. The nurse for my primary care doctor says all she can put on the note is what my specialist said. 

 

My last effort with my primary care doctor is to ask if she will write me a restrictions letter. But it seems like they aren't interested in doing that. It's as if doctors are scared to vouch for me. 

 

So it's either I go back to work sick and probably end up quitting because I can't handle it. Or get fired. I have a family to take care of. My wife is actually disabled from bone/nerve diseases. She was approved by the judge November 7th so we are still waiting on that. That's a positive but we literally have no income. It looks like I'm gonna have to go back to work and see how long I last. I stand on my feet the whole day. Man I am stressed.

 

I would try talking to your direct supervisor and see if they can do anything to accommodate you. Usually when you work for a corporation the local people you work with are more understanding. I would talk to them before you head back to work though. Or maybe your PCP can override the specialist in the eyes of your job. 

[Derek1987]

14 minutes ago, StayAtHomeMom said:

I would try talking to your direct supervisor and see if they can do anything to accommodate you. Usually when you work for a corporation the local people you work with are more understanding. I would talk to them before you head back to work though. Or maybe your PCP can override the specialist in the eyes of your job. 

My insurance company contacted my employer about that already. I never heard anything back so I'm guessing that's not an option. The insurance lady asked me on the phone if I'd be interested in a sit down job and she would contact my employer. I was like lady i don't know I even faint sitting up. And this was after they saw the message from my specialist I won't return to work until I see her again. I was like why would I say yes and my doctor is saying no but the problem is she won't vouch for me. I'm totally getting screwed here.

 

It's on my primary care doctor. But it seems like my primary care doctor doesn't know what to do and are being cautious and putting it right back on the specialist. Nobody will just vouch for me. I'm basically about to lose my income. My primary care doctor's nurse is actually the one writing up the notes for me. I guess I'll have to contact my primary care doctor yet again and see if they will do a restrictions note .But the nurse already told me she can only put what my specialist said. I guess they are too ignorant on autonomic dysfunction and are covering themselves just in case. All this is doing is bringing on more heart palpitations🤦‍♂️

[Pistol]

@Derek1987 - it is the responsibility of your PCP to determine your ability to work. My autonomic specialist even has it posted in his office that he does not give restrictions - that patients are to go to their PCP for that. In my case I worked for 4 years with POTS, I kept passing out and they accommodated me with giving me a desk job and less hours but I still was unable to work due to syncope and seizures. I also am not allowed to drive ( and I live 1 hour from where I used to work ). My PCP had wanted me to quit working for years but I was the main bread winner and kept at it Eventually I used up all of my FMLA and had to face the reality of stopping work. I had both short term and long term disability insurance and my PCP wrote a note that I was unable to return to work indefinitely. Since there was proof that I was unable to work despite my employer accommodating me this was accepted by the insurance company. I am now on SSDI. So - yes, your PCP is responsible to determine if and when you can return to work. He also is supposed to give a time limit i.e. until next appointment, 6 weeks or until syncope-free for 3 months - something they can go by. And no - the insurance company is not supposed to have a note from all of your doctors since this is absolutely up t your PCP. Also - yes, a comment on the patient portal is part of your medical record. But to be precise I would ask your PCP to write a note that you can give your insurance company. --- I feel for you b/c I had to go through the same thing and it was hard. Hang in there!!!!!!

[Derek1987]

9 hours ago, Pistol said:

@Derek1987 - it is the responsibility of your PCP to determine your ability to work. My autonomic specialist even has it posted in his office that he does not give restrictions - that patients are to go to their PCP for that. In my case I worked for 4 years with POTS, I kept passing out and they accommodated me with giving me a desk job and less hours but I still was unable to work due to syncope and seizures. I also am not allowed to drive ( and I live 1 hour from where I used to work ). My PCP had wanted me to quit working for years but I was the main bread winner and kept at it Eventually I used up all of my FMLA and had to face the reality of stopping work. I had both short term and long term disability insurance and my PCP wrote a note that I was unable to return to work indefinitely. Since there was proof that I was unable to work despite my employer accommodating me this was accepted by the insurance company. I am now on SSDI. So - yes, your PCP is responsible to determine if and when you can return to work. He also is supposed to give a time limit i.e. until next appointment, 6 weeks or until syncope-free for 3 months - something they can go by. And no - the insurance company is not supposed to have a note from all of your doctors since this is absolutely up t your PCP. Also - yes, a comment on the patient portal is part of your medical record. But to be precise I would ask your PCP to write a note that you can give your insurance company. --- I feel for you b/c I had to go through the same thing and it was hard. Hang in there!!!!!!

Thank you for your replies and support. I got a response from my employer on what they are looking for the note to say. I took it to my primary care doctor today. Again. I know they are getting sick of me. I have to turn it in by Thursday or I lose my job. Just from that trip I'm trembling, nauseated, and have that same weird feeling in my gut. Lord have mercy. I gotta lay down. Hopefully this note will satisfy my job and short term disability. This is my last shot to keep my job. I'm fighting for it even though I don't think I can do it. We will see what happens.

[statesof]

Hi @Derek1987 I don't know the full nature of what you can and cannot do physically as part of a job, but what I had to do was get a powered wheelchair because the walking around the office was too much for me and my meds only partly helped for that, having this device has allowed me to not have to worry about my POTS symptoms limiting me (for the most part) when I need to work around our office.

There are also just certain career options I would love to do but cannot simply because my physical limitations, so I pretty much have to do a job where I sit at a computer. I had to just think tactically about what I can do, and where am I limited? And how can I utilize a technology or medication so that I can work sustainably. Hope some of this helps.

[Derek1987]

1 hour ago, statesof said:

Hi @Derek1987 I don't know the full nature of what you can and cannot do physically as part of a job, but what I had to do was get a powered wheelchair because the walking around the office was too much for me and my meds only partly helped for that, having this device has allowed me to not have to worry about my POTS symptoms limiting me (for the most part) when I need to work around our office.

There are also just certain career options I would love to do but cannot simply because my physical limitations, so I pretty much have to do a job where I sit at a computer. I had to just think tactically about what I can do, and where am I limited? And how can I utilize a technology or medication so that I can work sustainably. Hope some of this helps.

Well the update is my doctor wrote me a note that my employer accepted. I am no longer under the threat of being terminated at this time. They can if they want because my FMLA is up.

 

I was talking to my PCP's nurse. She handles the notes. She wrote up my restrictions on a different note for the disability part. I was explaining to her I can't stand up for long periods of time. She said my doctor records from my specialist don't give me a case for that claim. Even though I had a follow up with my doctor and explained to her what the specialist told me.  My specialist told me not to drive. She said it's safer to take baths. She told me the longer you stand, the less amount of blood gets to your brain. I have faint/pre faint episodes. The Tilt table test showed my heart rate sky rockets when I stand. So I'm not sure if I convinced the nurse or not to write me restrictions that take me off of work. I work in a pharmaceutical warehouse. My job.... I am on my feet pushing a mobile computer around. I'm on my feet the whole day. I have to be because I move product around. That's how I came on short term disability in the first place. It was my 3rd fainting episode and I had two within a week. The 3rd was at work. I felt a weird feeling in my gut then I collapsed. I could feel my body trying to faint while I was laying on the ground waiting for the ambulance. It went away in the ambulance then came back while I was at the hospital. When they gave me Ativan my fainting feeling went away.

 

So the note for my employer says my specialist recommends me to be off at least until I see her next time. So if my restrictions for disability say I can work, it'll make no sense. I don't understand why my PCP won't just back me 100 percent. My specialist sent me a message through the portal saying my return to work timeframe depends on my next visit with her which I haven't had yet. My PCP has seen this message herself. So we will see. It's been a mess. If they say I can work now, I'll probably just have to quit. Or just go up to work and get sick again. But I do have faith in God so whatever happens, I'll be okay. I'm just anxious to get to where I'm going.

[Pistol]

Dear @Derek1987 - my PCP wrote a note that specified I can not walk more than 200 feet ( based on that is when my symptoms start, not necessarily the fainting ). At work I also - in addition to a desk job - had to use a wheel chair per human resources department. But in the end that too was too much. What finally drew the last straw was the fact that I was too unreliable to work b/c I had to miss so much work and call off due to my symptoms. - Your PCP needs to clarify your abilities, if the nurse is not willing or able to then you need to make an appointment with the doctor and go over it with him. The more specific your restrictions are spelled out the better it is , for insurance purposes as well as for SSDI in the future.  --- I would get the gears rolling and apply for SSDI - even though you probably will be denied initially, but it will get you started. It took me 2 years which is common. And you truly are not able to work from what you say. In my case continouing to work and pushing myself made my POTS worse. At least you will have some income from your wife's SSDI in the meantime. Hang in there - it will get sorted out. 

[Clb75]

I wouldn’t quit, I think you have a stronger case for disability if it shows you were fired because of your symptoms. i Would start keeping notes for your specialist, like vitals, time you can stand before you’re dizzy, all the things you can’t do etc. this information can show them that despite treatment, you’re still symptomatic and give them a better sense of what your limitations are. At the next appointment, she may have a better sense of what to recommend, especially if you have data to back it up with. Good luck.

[Derek1987]

On 1/14/2019 at 5:59 AM, Pistol said:

Dear @Derek1987 - my PCP wrote a note that specified I can not walk more than 200 feet ( based on that is when my symptoms start, not necessarily the fainting ). At work I also - in addition to a desk job - had to use a wheel chair per human resources department. But in the end that too was too much. What finally drew the last straw was the fact that I was too unreliable to work b/c I had to miss so much work and call off due to my symptoms. - Your PCP needs to clarify your abilities, if the nurse is not willing or able to then you need to make an appointment with the doctor and go over it with him. The more specific your restrictions are spelled out the better it is , for insurance purposes as well as for SSDI in the future.  --- I would get the gears rolling and apply for SSDI - even though you probably will be denied initially, but it will get you started. It took me 2 years which is common. And you truly are not able to work from what you say. In my case continouing to work and pushing myself made my POTS worse. At least you will have some income from your wife's SSDI in the meantime. Hang in there - it will get sorted out. 

My doctor wrote up restrictions for me. Initially the disability company claimed they had no restrictions form for my doctor to fill out. Now that my job has approved my absence, the disability company sent my doctor a restrictions form.

 

The doctor wrote sitting or standing for extended periods of time will cause fainting. Also no bending or lifting because the potential to cause me to faint. The disability company STILL isn't accepting that. I received a letter in my email stating they received my restrictions and it's not enough to support my claim. They need restrictions and all doctor records from December first to present. Which isn't much because I'm pretty much waiting to see the autonomic dysfunction specialist. So I have another paycheck I won't be getting. That's 3 in a row and rent is coming up.

 

I called them and asked why they need restrictions. They said they need the most up to date restrictions. I was like this is from Friday and covers me until I see my specialist on February 25th. Then he was like okay the restrictions should be good just to get them the doctor records. Which is basically a visit to my psychiatrist for my Xanax prescription refill. And I did take a CT scan on my adrenal glands. That's it. 

 

They are really trying to screw me. I have enough medical evidence already. I have creditors calling me. My policy for rent is if I don't have it by the 6th, they start the eviction process. And I don't need that on my record because I'm trying to buy a house this year. Wondering if I need to threaten them with legal action. 

[Pistol]

@Derek1987 Have you read the policy? There should be info regarding what they require in ways of restrictions. You should be able to get it online if you do not have the policy. It does sound like they are looking for ways to not pay out - if that is the case the policy might give a clue. Also - you can file a grievance with the insurance company so they have to review your case and respond with a detailed explanation why they do not accept the restrictions outlined by your doctor. --- Sometimes the insurance wants documentation from your employer that they can not accommodate your restrictions and that is why you cannot work ( i.e. they cannot give you a desk job until your February appointment ). 

[KiminOrlando]

In all seriousness, you may need to get that attorney. I had doctors who said they don't fill out disability paperwork. I had to drop them. 

And just because your doctor told you not to drive does not mean you are disabled. I was told to catch a ride with a friend, take the bus or a cab. It wasn't their problem. No bus comes by my house. No friend is going to take me because they have to go to their own jobs and a taxi back and forth every day takes a significant dent out of the paycheck. 

An attorney may be able to help sort that out.

[StayAtHomeMom]

As far as the records are concerned make sure they have the records from the doctor that filled out the restrictions. All of them. So that they have that information. Sometimes that can help. Then they will see why the doctor is restricting you. 

[JimL]

Any updates on this?

[Derek1987]

On 2/19/2019 at 8:58 AM, JimL said:

Any updates on this?

To keep it short as possible. I'm still employed. Still on short term going into long term(Lord willing they approve me for LTD). They tried to deny my short term disability and said someone with my condition should be healed by now(there is no cure). The disability manager also said my specialist isn't qualified enough because she's a nurse practitioner. She has a doctorate in autonomic services or whatever. I also told them I was referred to this specialist by a cardiologist. I said okay if I have a doctor look at my records and cosign me being off work, will that satisfy you to get my approval? She said no. Long story short, I had my specialist write the disability company a note of what my disease is. I sent them her background information. I also threatened to get my attorney involved. I didn't hear anything from them until the last day to get valid evidence in their eyes of my disability. Shockingly they approved me. Now I'm filling out things for long term disability. It's been a stressful hassle. 

[JimL]

4 hours ago, Derek1987 said:

To keep it short as possible. I'm still employed. Still on short term going into long term(Lord willing they approve me for LTD). They tried to deny my short term disability and said someone with my condition should be healed by now(there is no cure). The disability manager also said my specialist isn't qualified enough because she's a nurse practitioner. She has a doctorate in autonomic services or whatever. I also told them I was referred to this specialist by a cardiologist. I said okay if I have a doctor look at my records and cosign me being off work, will that satisfy you to get my approval? She said no. Long story short, I had my specialist write the disability company a note of what my disease is. I sent them her background information. I also threatened to get my attorney involved. I didn't hear anything from them until the last day to get valid evidence in their eyes of my disability. Shockingly they approved me. Now I'm filling out things for long term disability. It's been a stressful hassle. 

If you don't mind me asking, what state do you live in? I pay for short and long term disability, so as long as I have a doctor sign off, I can get up to 6 months on short term. Long term is through my retirement fund, which is the state where I live. I've heard SSI is very hard to get. I just want to get back to where I was or close, to be functional. If I can't, it's going to suck. I feel for you as you seem to be young. Having something like this with the more life in front than behind would really suck. 

[Derek1987]

24 minutes ago, JimL said:

If you don't mind me asking, what state do you live in? I pay for short and long term disability, so as long as I have a doctor sign off, I can get up to 6 months on short term. Long term is through my retirement fund, which is the state where I live. I've heard SSI is very hard to get. I just want to get back to where I was or close, to be functional. If I can't, it's going to suck. I feel for you as you seem to be young. Having something like this with the more life in front than behind would really suck. 

I live in TN. I'm 31. Been experiencing chronic fatigue since my early 20s. I'm guessing I've been dealing with this for a long time and my body cant keep up anymore. Now it's like since September 2018, I've been broken. My body is unpredictable now with a lot more symptoms. My wife use to be so mad at me for my tiredness. Any second I wasn't working I wanted sleep. 

I figure I'm headed towards SSDI. Unless I try some medicine and it works miracles for me. I'm sure they will try and get me a sit down job. My first black out was sitting down at Olive garden lol. I thought I was dying. I appreciate the sympathy. I'm definitely missing out on things I can't do anymore and things I planned to do. Sorry if I've repeated the same things over and over. I'm in so many threads and too tired to re-read everything lol.

[JimL]

2 hours ago, Derek1987 said:

I live in TN. I'm 31. Been experiencing chronic fatigue since my early 20s. I'm guessing I've been dealing with this for a long time and my body cant keep up anymore. Now it's like since September 2018, I've been broken. My body is unpredictable now with a lot more symptoms. My wife use to be so mad at me for my tiredness. Any second I wasn't working I wanted sleep. 

I figure I'm headed towards SSDI. Unless I try some medicine and it works miracles for me. I'm sure they will try and get me a sit down job. My first black out was sitting down at Olive garden lol. I thought I was dying. I appreciate the sympathy. I'm definitely missing out on things I can't do anymore and things I planned to do. Sorry if I've repeated the same things over and over. I'm in so many threads and too tired to re-read everything lol.

Have you been to the Vanderbilt clinic?

[Derek1987]

2 hours ago, JimL said:

Have you been to the Vanderbilt clinic?

No. That was gonna be my 2nd option. I have a specialist in Memphis where I live. I'm seeing her Monday for the 2nd time. Traveling sounds like a mt Everest task. But I'll attempt to go eventually I'm sure. If this doesn't work out where I live...

[Pistol]

@Derek1987 - I drove 9 hours one way to see someone in Vanderbilt and now drive 8 hours one way the other direction to see my current specialist. I truly would go for  referral as soon as possible to get checked out by them, especially since you have only tried one med and especially if you are trying to eventually get SSDI. You have to prove to them that you tried everything to get better. The autonomic clinic at Vandy sees people like us all day long and know what they are doing. There is a big chance they could improve your life greatly with proper medication. Best of luck!!!

BTW - has your doctor considered Modafinil ( Provigil ) for your fatigue? This is a commonly prescribed medication for POTS and has helped many with the symptoms, especially the fatigue. It was prescribed for me but I could not afford it so I take Ritalin with good results.