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smileyface

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Posts: 161
Reply with quote  #16 
I'm applying for SSI right now. They've already managed to lose my paperwork once. And it's only been a week. Haha.  Makes me wonder what goes on in that office.  I sent them a one inch thick bundle of medical records and paperwork. The lady who I was supposed to interview with (phone interview) cut my interview short once she saw my volume of medical records. I should get approved considering my other health conditions, and the fact that my CVS is severe and caused me to be hospitalized for an entire month.  I still don't think they're going to approve me but fingers crossed!

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akl_0518

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Reply with quote  #17 
I too was afraid of being declined and expected to have to continue to reapply.  I think what helped me is that I had a letter from Dr. Fleisher.  Keep in mind I am from Texas and had to temporarily relocate to Missouri due to some severe episodes I was going through.  I came here and Dr. F automatically admitted me and I stayed at University Hospital at Missouri for a month (which is where he practices).  There was a lady at the hospital that is a "Healthcare Representative/Eligibility Specialist" that got the process going for me while I was in the hospital.  She also got me approved for Medicaid - I had no insurance.  I did not need to go through any attorney/lawyers.  Her service was free.  All that I had to end up doing was fill out the paperwork that was sent to me.  It included my previous work history - I have lost 2 jobs due to this illness - and it also included a packet asking about my ability to do certain things such as activities, self care (which I need my husband to do a lot of things for me).  Basically they wanted to know the extent of my abilities and how CVS has affected my life.  Also, to seraphim_amon, I am only 25 and my age didn't become a factor.  Just keep trying at it - my husband and I told ourselves from the beginning that we would NOT give up because this is such a dibilitating problem and it needs to be recognized and we, along with every other CVSer deserves help.  Another good thing about this was that I got the Medicaid.  I received a bill in the mail for $115,000.00+ for just PART of my hospital stay but the lady I worked w/ was able to get Medicaid to backdate to the hospital stay and it took care of that and we also got a refund from the pharmacy for some of the meds that we paid for but Medicaid backdated those too.  They will only backdate from when you are approved to when you applied but it was a HUGE help.  Remember, just keep trying at it and give them EVERY detail you can think of about how CVS effects you...it will help.

Thanks!

Kiley 

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~~Adam K. Leach~~ "Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance." James 1:2-3..."Blessed is the man who perseveres under trial, because when he has stood the test, he will receive the crown of life that God has promised to those who love him." James 1:12
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klconner

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Reply with quote  #18 
Keep on keping on.  It is a long process, not everyone makes it on their first try.  Check with your state to see what free legal services might exist.  In Kansas we have a legal services system that helps with disability cases with fees based on income.  Also, the more Dx you have, the better your chances.  I promise I will get back on putting together information about the application process.  I am at my parent's home right now and my access to a computer is limited right now.  I won't be home until next month.  In the meantime, check out the social security websites.  the info is pretty straight forward.
kate

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With perseverance, the snail made it on the ark.
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ticchick

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Reply with quote  #19 

I do know that as far as work goes if you have a disorder considered a disability under the ADA and you have worked there for a year you can utilize the family medical leave act- I found out that if you have intermittent illness symptoms you can take an 'intermittent leave' meaning that if you have to call in sick, come in late, etc and it is related to your leave you are protected.  And only your human resources knows about your illness, your supervisor is not told what your illness is unless you choose to tell them.  I had that protect me for about 6 months in my job but unfortunately I let it lapse and did not get it reinstated before the deadline so was let go for 'other reasons' but until then I was protected and it helped.  As long as you are able to do your job with this intermittent leave they have to accommodate you.

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mahler1987

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Reply with quote  #20 
The only problem wit FMLA, is that the vast majority of employers only allow you to take it without pay.  Hence, your back in the same boat of having no income.

For those who are completely disabled, I would suggest going for SSDI, your not going to get rich off it, but it helps pay the bills.  It is truly a rarity that someone gets it on the first try.  After the first rejection, get an SSDI attorney, check their references.  No matter your income, I believe in all states, they are only allowed to be paid a percentage of the "back" SSDI.  The most I have heard of one being paid was 25% of the back benefits.

Pattie

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I may have CVS but CVS is not me.
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ginab

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Reply with quote  #21 
Kiely,

If you are out there we would love any information that you would like to share on your disability process.  My husband is 48 and has the most severe case any of our team of doctors has seen he is sick 5 of the 7 days out of the week now.  He has been declined twice and we are now in the process of getting a hearing.  Thank you so much for your help.

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gina m Bojarski
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smileyface

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Reply with quote  #22 
Gina,

Do you have a lawyer?  I got approved once I had a lawyer (during reconsideration).  I am not sure the lawyer did anything for me, but I think it was more that SS saw I had one.  

They get paid out of back pay so you don't have to upfront any money.  It's something to think about.  They usually cost 25% of backpay.

I'm sorry to hear that your husband is such a severe case.  I was too, until they figured me out.  There is hope yet.  Have they tested him for metabolic conditions that might mimic CVS?

I hope he starts feeling better soon.  Good luck!
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ginab

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Reply with quote  #23 
We do have an attorney, so hopefully this will help.  Tell me anything you can about the Metabolic conditions, Mike does have Autonomic Dysfunctions.  His Blood Pressure drops at the start of and episode way low, usually 60/70 over 40/50, he passes out.  This happens just like the CVS it comes out of no where so it has been pretty dangerous.  What has gotten you under control if you don't mind me asking.
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gina m Bojarski
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smileyface

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Posts: 161
Reply with quote  #24 
After reading your post, the first thing that comes to mind is Addison's Disease.  Have they ruled that out?  

Other metabolic disorders that can mimic CVS are acute intermittent porphyria, fatty acid oxidation disorders, urea cycle disorders and mitochondrial disorders.

Does Mike have autonomic dysfunction only during an episode or on an everyday basis?  I have dysautonomia also.  They have controlled my blood pressure and heart rate with IV fluids.  Low blood pressure can make anyone nauseous and vomit--many people with dysautonomia suffer from chronic daily nausea due to the underlying dysautonomia.  Also, delayed motility (gastroparesis or chronic pseudo obstruction) are associated with dysautonomia and may be affecting him.  These conditions are treated differently from CVS so it's important that they are ruled out.

Hope this helps a little bit.

Message me if you want to talk further...

Oh, and what has helped me...IV carnitine (wasn't working orally, so I get it IV), diet changes (can't metabolize fats), IV dextrose instead of saline...I have a fatty acid oxidation disorder.
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DavidM

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Posts: 26
Reply with quote  #25 
I would advise anybody with either CVS or Abdominal Migraine and is trying to get SSDI to hire an attorney as soon as you are declined the first time. I suffer from a myriad of other medical and psychological issues and I finally got my hearing last week after waiting 2 years and 9 months since I first applied. The ALJ was sympathetic and ruled in my favor. I'm just waiting for the written decision to arrive by mail. I live on Cleveland, Ohio. Ohio has one of the lowest acceptance percentages on first time applicants and reconsideration applicants in the nation. I was very fortunate that a very prominent and respected SSDI attorney agreed to take my case.

Since all SSDI attorneys get paid based on a 25% percentage of back benefits you receive or a fixed amount $6000 I think, whichever is larger, it would behoove you to do research and get the best SSDI attorney in your area. If he or she is willing to take the case then you have a good chance of getting a favorable decision at a hearing.

The key to all this is having documentation of your illness. A good SSDI attorney will eventually have a huge file of medical info based on your doctor's visits. And make sure you see your doctors regularly, Even if you don't end up in the hospital you can still get approved. The other key is to communicate to the attorney any changes in your medications, or new symptoms that you have discussed at your latest doctor's visits. While they care about the various diagnosis' you have, it is the specific symptoms that you are suffering from that prevent you from working. Make sure you communicate to your doctor(s) all the symptoms you are having even if you don't feel they are related to your diagnosis. Also if you are having psychological issues like depression or anxiety make sure to document those as well, as SSDI takes those symptoms into account as well.


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Ehrithane

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Posts: 31
Reply with quote  #26 
So far, I have disability through my previous jobs insurance.  They fight me tooth and nail for it, every couple of weeks they are calling me with some reason that it's going to be canceled if something isn't filled out.  I honestly don't get it, my new PCP filled out the paperwork properly for my current condition, stating I can't drive, can't make proper decisions, can't deal with any stress a whole list of reasons that prevent me from working, yet the insurance company still wants a constant update, despite canceling my actual insurance policy on me (their error) preventing me from furthering any action while I'm waiting on them to get it fixed.

It honestly seems like the only way to get anyone to believe you have CVS is for them to see it first hand.  Even members of my own family have doubted that I'm sick, or that it's as bad as it is, until they see first hand, then they are on my side, angry that the world doesn't believe me.  I have gotten a call from someone from my ins. company about the SSD, but as of now, they told me I don't have to worry about that yet, "unless it becomes a more permanent condition" so far going on a year of being unable to leave the house except to go to the doctors and the occasional trip to the store to get essential items for attacks that I can't rely on other people to pick up.


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jasonj420

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Reply with quote  #27 
my husbad has had cvs for 7 years he is 32 now and he did get his disability due to cvs, we got denied when we applied, we got a lawyer and got approved it took about a year after the lawyer got it but it is worth the wait.we struggled financially once my husband got sick because i was the only one that could work. it does help out some now financially plus he has the insurance he needs to be able to see a doctor like he should. the judge we had on our case actually knew someone with cvs so that helped a lot. 
if you apply and get denied ... GET A LAWYER
Rachel

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jason jeter
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Mobilemouse101

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Posts: 9
Reply with quote  #28 

I have been suffering from CVS for close to ten years now. I have no other choice but to try to find a job to get me by to pay my bills. However being sick every two weeks is not going to be good. So if a person has no job and is waiting for the SSD to get approved, what do you do in the mean time to live and get by?

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Smokeater42

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Posts: 1,603
Reply with quote  #29 
I have SSDI  But its also  psychological category , I was let go by my Fire Dept,(i was a Fire Capt.) As a danger to other Fi8refighters becouse of my uncontroled Vomiting, i got SSDI before i got dxed wiuth CVS
Heave hooo
Smoke

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When you have CVS life is one puke after another
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ginny

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Reply with quote  #30 
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