Multiple Sclerosis (MS) Support Group

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jennilee68 10/18/2011

I have been going thru a lot of MS type symptoms lately. They have been slight and insignificant until January 2011. Since then, I am constantly hit by something or other. I have had MRI's and seen neuros. My MRI's show no lesions and the neuros have sent me on my way. They tell me there is nothing that can be done for me. I have been tested for everything under the sun and come back with nothing. I am seeing a new neuro next week and am hoping that he will see something that another doc may have missed.
At any rate, I just am struggling anymore to go to work. I do not have much left in the realm of leave as I have taken a lot due to hospitalization, doc appts, tests, etc. I come to work no matter how miserable I am feeling. I use my cane when things aren't too bad and my wheelchair when walking is impossible. Several of my co-workers tell me that I should go home when I merely am using my cane. I explain to them that I am not contagious so I need to come to work. My boss worries that I am going to fall...not sure if that is concern for me or for the agency.
I just feel so hopeless when I am going thru an "episode" that I think I should quit my job. At this point, I think I can cash out my retirement and live on that for a while and hope that I can get approved for SSD. I am not sure what to do. Since I don't have a diagnosis of what exactly is wrong...no MS, no Lupus, no RA, etc. My gp gave me the diagnosis of right side paresthesia(sp?) Would that be enough to get SSD? Anyone with any advice would be helpful. I feel like I miss so much work due to all of these tests and appts that when I get really ill, I may not have a job anymore.

oleblue 10/18/2011

Sorry to hear that you are going through so much, I had a bad Flare at the end of Feb. and have never seemed to have recover'd. I had another Flare a couple weeks ago and had a 3 day steroid treatment, it helped with the symptome but Fatigue has set in pretty bad and I will be stsrting pulse steroids, maybe that is what you need to get back on track, seeing as he said I'm secondary now.

As far as SSDI goes I'm on that but got it for other medical problems and the MS was just a slap in the face when I was down. It took me a long time to get SSDI and if I was to have to do it again I would either go to a Disability Lawyer or I would go to a place like Allsup and let them do a evaluation to see if they thought you would be elligable for SSDI, as they won't take on a losing case and lose money themselves and they know what will get approved as that is what they do for a living. I know it is easy to say but hang in there as it is possible for us to get better. Best of luck to you and I hope you can find some relief.
Take Care
Dave

deleted_user 10/18/2011

yes you can get better- but i was like you i hung on to that towel!! you have long term-disability? just protect yourself- if it comes to it-you still recieve some pay and you can file for - ss cant remember it all- but i went that route-it worked fairly well as not to do anything--hugs!!

deleted_user 10/18/2011

I don't know where you live but it can't be any worse a place than where I reside and I managed to get a diagnosis. Took me 6 years but I finally got a neuro to get me an MRI which showed definitive MS. You may need a 3 Tessla to diagnose it or an LP or evoked response. Get thee to another neuro (preferably at a teaching hospital) and as far as SSDI you can't get it or even apply without a confirmed diagnosis of something. I am assuming you are on no drugs for this "affliction" of yours. Just like you have to kiss a lot of frogs to get to that prince, so it is with neuros, you need to go through your fair share in order to get the right one. Keep trying. DO NOT quit your job. Make them fire you and then you can collect. Stay strong and get yourself a diagnosis of something so you can ease your mind and move forward. Best of luck and keep snubbing the neuros who diss you as I know you will finally find one who gets it and gets you some diagnosis and allows you to go forward. As for the cane at work and that comment - don't tell them where to stick it just "stick it!" There is just no accounting for rude people. What can I say. Again sorry!

deleted_user 10/18/2011

hi , i would not quit my job in a million years, i would let them fire me first. i do think that you have to have some sort of diagnosis to qualify for ssi , not sure . i had to have a diagnosis to get my handicapped placard

deleted_user 10/18/2011

Agree with marg07,

Having a job, any job, volunteer even if just part time does wonders for a persons self-esteem plus that little paycheck. I thought not being able to work would be like retirement. WRONG!! Having to quit and voluntarily retirement are like night and day different. If you have to quit for health reasons keeps you from don'g all the fun stuff you figured on when retired.

Being sick puts you at greater risk of being alone, with few friends. Unless you are into fishing on a creek bank somewhere by yourself work as long as you can.

marilyn4342 10/19/2011

I tried and tried to perform different jobs within my company. When I finally couldn't do any of them, I quit!

I hired a disability attorney and never looked back. He won my case and SSD paid him out of my past earnings. I do miss working, however my poor memory prevents me from doing so.

Keep looking for a new neurologist, you need a good one. Try contacting the MS Society closest to you. They may be able to steer you in the right direction.

Hugs and Prayers
Marilyn

NormanG 10/20/2011

I would have to agree, don't quit, I haven't work since the first week of May this year when I went on "short term" disability. I didn't know what was wrong with me at the time, but knew I couldn't keep up my work pace and the location had real medical facilities. I called my boss and let her know what was going on and she was able to get me back home within a week. She encouraged to seek short term disability which allowed me to remain on the companies books and continue to have the company insurance at a nominal fee.

I saw a neurologist in June who diagnosed me that month after MRI's and right away. As soon as I got the diagnoses, I did some research found a company who did all of the leg work to get my application for SSDI submitted, and I just received word I was approved, not receiving any back pay or will not receive any benefits till December :(. I'm still waiting on the company to make another decision on if the will continue to pay me for the extension I requested til the middle of November, got to love those insurance companies, they take the companies money but when its time to pay out...

Sorry for rambling, really tired this evening :o)

jennilee68 10/21/2011

Well, I appreciate all of your comments! I am still sticking it out at work. I come in and do the job. It is a struggle and is becoming so more and more. I find that I am using walking aids more often than I used to. In the mean time, I listen to the bosses worry about me walking around here. Even tho I have my cane they fear that I will fall. I am sure the liability issues are enormous with them. I am fighting to hold on!
Thank you all for your input.
Jenn

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