Is anyone here on disability of any kind?

Can you tell me if you are on disability? I need to be but I'm scared. I'm currently employed and have disability ins thru my employer; which I have paid for a number of years. Here is the problem: The moment I turn in my disability paperwork (Not SS disability but my purchased disability policy) I walk away from my job. If the claim is rejected by the insurance company I lose my job AND Insurance. I'm scared to death to file for my paid disability. I have total paralysis of my left leg below the knee; severe numbness in my right foot. My last three fingers on each hand are not dependable (I cannot type without fixing my mistakes, cannot operate a copier very well, misdial phone numbers all the time). My neurologist DID tell me his testing showed damage to my wrist nerves but he refuses to complete the disability paperwork. He sent all the notes to my family doctor to complete the disability form; which I am told his staff is working on.

So... I just want to know if anyone else with CIDP is on disability or if I'm stretching it too far. After an IVIG treatment (I take every three weeks) I feel better (not necessarily disabled) for several days but by the time I am finishing my 2nd week after the treatment, I go downhill and am definitely disabled in my opinion.

Sorry for the long note... just want to make sure I put relevant info out there so I can have some feedback based on your own personal experience.

Thank you all!

On SSDI, did disability through work, I filed myself after my neurologist said I’m disabled. Was approved last July,keep in mind that you have to be considered disabled for 5 months from date doctor says you are for you to get disability.

I was able to work for my company part time during the 6 month waiting period I had for my disability insurance. On days I did not work I was allowed to use my accumulated leave and still get paid. You should be talking to your HR department and getting a copy of your disability insurance policy. Read it and take any specific questions to your HR person. I worked part time for 6 months while the disabilty office determined my eligibility. I did not offically quit my job till approval was received from them. Once I was approved and quit they did require me to file for SS and I was approved for that right away with another waiting period. By the way, the check I get from this disability company every month is tax free money, since I was paying the premiums myself and it was not paid by my employer.

I did have multiply disabilites though and I'm sure they took that into consideration when approving me.

Good luck.


I am now on long term disability from work,I've been out of work since Jan.9 of 2013 first I was getting short term disability checks with in 2 weeks, after six month insurance company switch me on to long term.I'm covered for 30 months for my medical leave of absent for both medical and disability pay.Both my primary physician and neurologist told me I can't never go back to work because of the job I do at work.

I received a call from my insurance recently ask me if I would like to apply for social security benefit they will provide a lawyer at no cost to me,when approved they will pay me the difference.Since I am now 63 going on 64 this summer I agree.Since they have all my medical record I don't have to do anything but wait and not losing any monthly checks (I cannot afford without it )

You should talk to lawyer if you want to apply for social security,I talk to 2 lawyer and told me at least 6 months waiting and the lawyer charge is 25% of your first check up to $40000.00 .If you do it your self the chances are you have to wait much longer and possibly be turn down.( been told)

My insurance are very good to me and offering lawyer for free and paying me the difference is make since and good for both party I think.

I applied myself for SSDI, just waited 3 months after neuro told me I was disabled, only had to wait 3 months.

Thanks all. Feel free to keep posting. I'm interested.

I am on total 100 percent disability. I recieved SS within a month which I know is quite unusual... Ok.. since you are working... take all the sick time you can until you exhaust it, This should start the ball rolling for long term disability.. it's hard and a pain id the rump but thats how it works. .. Make sure your doctors will back you up. this is the most important part of all. ask them if they think dis. is the way to go, will they sign the forms, send your files, etc. it takes time, patience etc. but it is worth it in the end. I have dis. insurance from work. They did declare me 100 percent disabled. So I was lucky to get through both. I'm 59 and this will cover me till 65 then I'm on ss. good luck and it would be good for you to start the ball rolling.. start with those doc..

Thanks CRN :) I've got the ball rolling. Meeting with my Dr and picking up disability from on Tues. It's a disability policy thru my employer; have some dental work and vision (new glasses) then turning in my paperwork and going home. The insurer could reject my claim but I'm confident they won't after visiting with my Dr. He's surprised I'm still working. Anyway, hope to be "at rest and without stress in less than 10 days

Former Pilot, have you ever heard the saying; "You can't go in shooting with an empty gun" in other words get as much testing and any other relevant information ready for submission. I submitted my application and was approved by phone in a week. I live in Canada and my application was for Canada Pension Disability and it didn't affect my SSQ or job position. Gary

LOL - thanks Springmang. Good words of wisdom. When I posted this question I had just joined this forum and was not very knowledgeable on CIDP. I didn't know if it was a disabling condition or not. To me it definitely was. I have been thru all the test to confirm CIDP including velocity, spinal tap, etc. so there is no question as to the diagnosis. I went on short term disability last week and filed for long term dis thru my insurance that I purchased thru my employer. I have also filed for SS disability but expect to have to fight that one. I am hopeful my employer's long term disability will come thru for me. It's a 3 to 6 month waiting period for a decision. If you are a person of faith, I would appreciate your prayers that they grant my unemployment as I am truly unable to do my job. In fact, I suspect they will fire me due to "incompetence" which is not "incompetence" but inability to perform my job due to this disease. THank you again for your reply

Check out Accommodation and your rights:

Thanks springmang. I will check it out soon. Shortly after posted question my doc told me I need to do it. i'm on short term Dis thru employer and filed for my LTD policy I carry thru my employer. He didn't see any reason to worry about getting denied (but of course I am worried). I work a few small projcts around the house in the a.m. and then nap the rest of the day. Pain control is better as they put me on Fentanyl and Tramadol. Together, they really help and don't nock me out - I just wear down from the small projects (no lifting, just organizing cabinets, dusting what I can reach (hard to lift arms). He said we would up the fentanyl every 30 days until we have thet control I need. I'm only on 25mg but think 50mg is what I need. Sorry for the spellying. I can spell well, my fingers just don't work well so I hen peck. I'll check out your link. Thanks again!

I was on leave without pay for a year while the Office of Personnel Management processed my disability retirement paperwork. It was approved and backdated to Feb 2012. I was working for the Department of Veterans Affairs, and had the same issues, along with a few falls at work.

My retirement came through, then SS disability processed without any hitches, I did not even have to have a SS exam, and it was approved. SS was faster Than my retirement.

And This August I will be Medicare eligible.

I have been on disability trying to figure out what was going on . I was finally diagnosed with mild to moderate CIDP in all limbs that is progressing . With this information I applied for SSDI I am currently waiting meds push back the pain so so but they also cloud me up. I help out around the house but after ten minutes I need an hour rest. This really sucks . I am a big man I have built and ran one hundred million dollar plus project and now I can’t even walk without stumbling or get up from a sitting position without help. Humility has been put in my face big time. I am thankful for family especially my wife.

Amen to what you just said. I actually am blessed in that I have only hit my head twice in all the falls. I too am a big man 6'4" is a long way to fall when your legs just quit. I have fallen 44 times last year and 17 times this year. Today I got outside and was playing around with my towable sprayer to get it ready to spray for ticks, not easy to do in a when your limbs don't cooperate and have to sit back down in wheel chair.

But it is done. Now I need to get my son to come down and clean up the tree limbs so I can run the mower thru the yard. Too big to drive over. My family won't let me go fishing by myself any more, and won't hardly let me go out the door without a chaperone. It is very frustrating to be 50 and need a babysitter.

And not only do I have issues with my limbs, my face and neck and chest go numb, and as if that is not enough if things keep progressing at the current rate I will have to start wearing a catheter.

But as I said earlier, SSDI was the easiest benefit and quickest that I applied for. Hang in there, as long as the Dr.'s records are detailed and you submitted statement, and others submit statements about your condition and how it has effected you and your daily life, you should be fine.

My Primary care doc has been after me to go on disability for over a year. My concern is my medical coverage. I’m not sure how I could afford my current or future meds if I lost my insurance. SSDI in Texas has a 24 month wait before you’re Medicare begins. I am home laid up in bed today because I had my 6 year old grand daughter over this weekend. It’s sad that a 6 year old plus 2 days of cold rain ate up another sick day. I’m afraid if I continue to have too many more of these days I won’t have a choice.

Ok Sunshine, lets see if this helps. If you have been with this company for a while you may be able to medically retire from there and keep your medical coverage. That was an option for me from my employer, and I only worked for 4 years with them. Your should also check into FMLA( the Family Medical Leave Act).

I had planned on working until age 65 but this disease and then pulmonary emboli and a TIA cut that plan short by 16 years. I did everything by the book, notifying my employer and the HR was hugely helpful. There were a few hiccups, but that was my fault, just make sure that all medical records are submitted that have anything to do with your illness. Along with that signed statements from friends and family and yourself, about how your illness has affected your daily life, and do not be bashful about it.

If every thing goes according to your plan you should be retired before your leave expires. And yes eventually they can terminate your employment, for circumstances beyond your control. It almost happened to me. My retirement was finally approved the week before I was to be terminated.

But remember, the things you have to remember are that if your health gets the better of you and affect your job performance then they can terminate you before you get to file for retirement. So these are the things you need to think about.

And the two year waiting period is for all. I too had to wait. Aug of this year is when Medicare becomes effective for me.

God Bless And I hope this helps.

My employment was terminated after my STD expired. I did not have a CIDP diagnosis at the time. I was in a wheelchair with a home health aid when I had to be derived to work to clean out my office. Humiliating. 22 years, 6 figure salary, work identity gone! We are adjusting. I was the breadwinner and carried the medical insurance. This is an adjustment. I was approved by SS and Medicare begins in May. I still have a lot to learn about humility. I have trouble typing on even an iPad. I look great to friends but they do not see me. I went to the grocery store and had to go sit down several times. I was gone for an obscene amount of time. I made it home and crawled up the stairs to bed in my clothes., last night I could not get my boot off so I waited with it on until my husband came home.

Humility but I am still alive. My husband does all that a guy can do but is not emotionally able to help soothe me. My self esteem is low. I pray and meditate. I have not tried IVG yet. We are at odds with my neuro. He is not familiar with CIDP. I am on waiting list for my local center of excellence. July is my appointment.
Keep the Faith and be well.

Apparently , my old boss still talks about me. I went over to visit her this morning, and she brought in a few of the members of her team to introduce me. I am the one that always had a smile on my face and in my voice when answering the phone. I worked in a VA call center. And she uses my positive attitude to try and motivate the not so positive members in team meetings.

And no I am not that positive these days. I still strive to put a smile on each day, but even using my wheel chair to go to the store is a challenge. I feel like I have run a marathon, the drive to and from, the lifting and loading the buggy, the pushing the buggy in front of the power wheel chair without running over someone, and then of course the rude people, who look at them like you have no business being in the same store with them.

I'm waiting for my appointment with the new neurologist next week. Then getting her to send records to UKMC center of excellence as they are just waiting on records to schedule appointment.

I agree typing is an adventure. Spell check is a Blessing.

Have a Blessed Day, and good luck with your upcoming appointment.