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Work or SSDI?

  • By MommaCin

    I have not been officially diagnosed…that apparently won’t happen until Feb when I go back to the neurologist. I had neuro psychological testing Monday, and can see where I’m just not as sharp as I once was. The neuro is trying to rule out Parkinson-ism and Alzheimer’s.

    I quit my job back in August (legal secretary), partly because of the leg weakness, the cogfog, the stuttering, the pain in my hands, not to mention the stachybotrus I had been exposed to for over a year, oddly when a lot of my troubles started. MRI shows white matter disease, the need to rule out MS even though the ‘lesions’ are not typical of MS. (which I still don’t understand)

    I have horrid charley horses at night or when I get cold, constant cold hands and feet, foot drag, back cramps, vision problems, hearing problems, the fatigue just kicks my butt, constant bathroom stops…etc….etc….etc.

    I have been diagnosed with chronic migraines with aura & status migranious. I am gluten intolerant, but it’s not celiac’s, chocolate, dairy, nuts, cooking oils intolerant.

    I am 50 yrs old and I’m am in such a quandary as to whether I should try to find other work, NOT mold infested!, or if I should get my SSDI application started. Some days are good, some days aren’t.

    One of the downfalls is, to get a good paying job, I would have to travel a major interstate each way, I have vision issues as it is, along with night blindness, the eye doctor strongly suggested I not drive at night at all.

    Does any have any suggestions or if your situation is similar, what did you do?
    Thanks!

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  • By Erin Rush Moderator

    Hi MommaCin, in addition to any community feedback you may receive, I wanted to share some information we have on applying for SSDI. Applying can be a long process, so only you can decide if it’s time to pursue this option or not. Here is the link to a good article on the process of applying for SSDI — https://multiplesclerosis.net/living-with-ms/applying-for-social-security-disability-benefits/. Whether you choose to work or not, I do hope you find the option that works the best for you! Thank you for reaching out. Best, Erin, MultipleSclerosis.net Team Member.

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  • By Debblo

    Thak you Erin, I’m just starting the process. I’m 58 years old. The job I have is alot of lifting people and I find myself getting weaker everyday. I trip so much at work people joke about “them cracks in the floor”. It is hard to have your co-workers see this. Falling infront of them is worse, that has happen to many times.

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  • By wendy

    Work as long as you can. I was given a note to my employer from my neurologist for 2 weeks off. They decided to let me go. If you get a note and can still work keep working. SSDI is a difficult thing.

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  • By cwilliams

    I currently work full time.I struggle to make it through the work week and am down almost every weekend. What’s a person to do in this situation? I can’t afford to go part time.c.williams

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  • By MommaCin

    I was in the same boat C. I quit..I had to, I just couldn’t take it anymore. Took a huge financial hit but I decided my health was more important.
    Are you diagnosed, if not, start working on getting diagnosed.
    I filed for the disability and was denied after 3 months, I have filed the reconsideration request…hopefully
    with the new records they will do so. I also have a spinal mri on Thursday and they took 5 or 6 tubes of blood today.
    Dr. is looking to rule in/out MS, Lupus, or Sjogrens.

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    • By Erin Rush Moderator

      I hope the second time is a charm with your disability application, MommaCin! Don’t give up! Keep us posted on your progress. And yes, your health matters more than any job. Thanks for the update. Best, Erin, MultipleSclerosis.net Team Member.

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    • By Cynthia

      For me it was a really hard decision. I was diagnosed at 32 working in the hospital as a Respiratory Therapist. I did have benefits at the time and I took off work until my exacerbation subsided to where I could do basics with pts. at work. I was lucky and worked with a good team. As time went on I got back to the level I guess where I was gonna stay. I was afraid to change jobs because of ms but I realized t was controlling my life. I finally switched hospitals and from that point and on I always took STD and LTD. I was fortunate I guess because it was offered and I had to wait 2 years without an exacerbation because of pre=existing condition. Through the yearsI used STD several times and use to take something for my fatigue.
      I didn’t want to quit working but in 2011 finally stopped working because at that point is was literally killing me. I did hAVE LTD which paid 60 percent of salary or I probably would have been on skid row. People who dont have STD or LTD are faced with a very big decision especially if you are alone or alone and have children. I would talk to your MS team because there are meds out there that can help with fatigue. Only you know how you feel. I will pray for all of you to make the right decision with a good out come.

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  • By Crystal【ツ】

    I am getting to my breaking point. I am just so exhausted anymore. I currently work 40 hours per week and I have to in order to provide for my family and pay the bills. I don’t have the option to quit. I wish I could. I don’t know what to do. I’m so overwhelmed.

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    • By Erin Rush Moderator

      Crystal, I am so sorry you are feeling so exhausted. You may want to consider starting the application process for SSDI — https://multiplesclerosis.net/living-with-ms/applying-for-social-security-disability-benefits/. If that is not a possibility at this time, you may want to start networking to see if you can find a more suitable position. Please excuse my ignorance on your situation, but would working from home be an option with your job? Also, if you are working full-time, your employer is required to provide reasonable accommodations under the ADA act — https://multiplesclerosis.net/living-with-ms/the-americans-with-disabilities-act-do-you-know-your-rights/. Please know you are not alone in this. Many of our members have had to work longer than they would have chosen, due to concerns about income and health insurance. You may also discuss this with your neurologist and get his/her feedback on your health and progression. Thank you for reaching out and I hope you get some relief very soon, whether it comes in the form of a new position or more support at home and in the workplace. Best, Erin, MultipleSclerosis.net Team Member.

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  • By sharon123

    Im 58 female. Nurse 26 years, diagnosed 2004, then PCP and second opinion Neurologists saiidsaid no you dont have MS, 13 years later going from job to job unable to shake off even a little cold. Was eyes with pneumonia however when I get home I couldn’t seem to recuperate I ask the doctor to do an MRI considering history of my first diagnosis in 2004 the MRI showed aggressive progression demyelination to bilateral of the brain I have constant pain in my feet and legs and hands I have fatigue like no other I work 12-hour shifts 3 per week come home and lay down until it’s time to go back I do have short term disability and long-term disability I just don’t know what to do anymore I’m laying in bed at midnight talking to you guys no one else seems to get it. Heres the kicker! Go for a second opinion before starting treatment. She says NO, THIS IS NOT MS,,,,,BUT THIS MRI IS MORE THAN 3 month old your spinal tap is more than three months old so let’s review MRI of the brain and let’s do an MRI of your spine and let’s redo your lumbar puncture at which point my heart dropped and I felt like I was reliving the whole ordeal just as I did in 2004 it took up three years of my life I’m not sure what to do all I know is that the pain is unbearable mama won’t seem to look at me like I’m just being lazy my co-workers rolled her eyes at me when I splint or Mom when getting up to walk as that is the toughest part once I get going it is bearable don’t know how much longer I can go on like this even at work some of the most Elemental things things I’ve been doing for two decades Escape me I really have to focus on what I’m doing nothing is routine anymore nothing can second hand I really have to work at it so I’m not sure how long term disability or short term disability works I’ve never used it should I file for Social Security disability I am asleep. I am single I’m at my home I have no car payment.

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  • By Erin Rush Moderator

    I am sorry you have had to go through all of this, Sharon! Please don’t be afraid to use the disability you have been paying into for years. It is there to be used for situations such as these. You should be able to find information about long term and short term disability by looking into the paperwork you were provided by your employer. I generally get updates on the disability insurance around once a year, usually around the time of health insurance re-enrollment season. You can also ask HR about it, but I understand if you would rather not alert anyone to what you may be planning on doing. Every company offers different disability insurance coverage, so you really will need to see what is offered through your company. Here is some helpful information on how to apply for SSDI — https://multiplesclerosis.net/living-with-ms/applying-for-social-security-disability-benefits/. I hope you are able to make some decisions that are best for you. I know it’s not easy to consider going on disability. Thank you so much for sharing and know you are welcome here anytime. As I always say, we are “open” 24/7. Best, Erin, MultipleSclerosis.net Team Member.

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  • By cjuncker

    I am 64 years old & was terminated from my job 3 1/2 years ago after falling at home. One under talked about disability benefit is the private disability insurance a lot of employers offer full time employees. Like SSDI, you have to be no longer working to qualify for private disability insurance. However, it is important that you understand your employer based disability plan before you stop working. Many employers offering this benefit also allow the employee to choose to have taxes withheld on the disability insurance premiums the employer pays for the employee. This is an important election during the annual open enrollment period so to make private disability benefits non-taxable, (paying not tax on benefits is huge!).
    Disability insurance, both private/employer based or SSDI, is dependent on your inability to no longer being able complete your own job or any job to the satisfaction of your employer. Thus, in your application for disability benefits you should focus on explaining and getting your medical records documented to support your medical conditions that prevent you to no longer complete your job duties to the satisfaction of your employer or any future employer.
    It is very likely that your first application for employer based or SSDI disability insurance will be denied. Once this occurs you should hire an attorney that specializes in ERISA lawsuits for employer based disability appeals or SSDI lawsuits for SSDI appeals.
    Be prepared for the appeals process to take a couple of years. Be patient and your patience should eventually result in getting disability benefits, it my case 60% of my former salary until I reach retirement age. Note: Your attorney’s fees will be a percentage of your back pay benefits, (usually 25% for SSDI & up to 40% for private disability benefits).

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  • By kathy123

    I have had MS for years I got diagnosed in 2011 it took a long time to get diagnosed with multiple sclerosis eventually in 2012 I had to stop working due to fatigue memory loss and a lot of pain I applied for disability with an attorney and got it after one year then they took it away from me saying I should not have got it we are now in 2018 and I’m still fighting to get my disability unable to work all of the disability doctors said I was disabled and should get disability my neurologist said I should be on disability the attorneys I have cannot figure out why I am getting denied according to all my MRIS showing my lesions all the neurological testing it’s crazy I don’t want to leave the house at all does anyone have any suggestions

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    • By Erin Rush Moderator

      I am so sorry you are in this situation, Kathy123. It sounds like you have done everything you can. Some states seem to be much more restrictive when it comes to SSDI qualifications. The best advice I have is probably also the most annoying — just keep at it. Some of our members have faced multiple denials before finally being accepted. I am linking to an article that may be helpful for you. It has tips that you may have already tried, but I wanted to offer it to you anyway, just in case it had some new ideas you could try — https://multiplesclerosis.net/living-with-ms/applying-for-social-security-disability-benefits/. I am sorry that you are having such a hard time with this. As you can see from this thread, you are not alone. Thank you for reaching out and please keep us updated on your situation, if you feel comfortable doing so. Best, Erin, MultipleSclerosis.net Team Member.

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