Leaving my job and starting to file for SSDI

    • Anonymous
      April 26, 2007 at 4:50 pm

      Wish me luck and any input is welcome. I am taking a huge chance and big step towards changing my family’s life next week. I am quitting my job on Tuesday of next week in order to start my SSDI filing and my wife will be taking a fullktime job. I could not do this without her support and guidance. THank you to everyone here that has given me assistance over the past week or so. This is a great place to share, vent and moan when needed and I am glad to have found everyone. I wish the cercumstances were different for us all but such is life. Like I read on someones signature ” I may not like the card I was dealt but I’ll still play” or something like that. My pain never stops and my weak legs and arms are getting worse. I cant afford the IVIg because the copay is so large with my current insurance. Maybe when my wife insurance starts things will change. I will continue to fight and I know that my future will be filled with daily struggle but I must keep going. One day at a time and one weak painful step at a time. I wish you all good luck and I hope to report my successful SSDI to you all very soon (or a year) I mentioned in a previous email about the braces I use and I wanted to say again that they have helped me a lot and you should check them out. Google Smart-Step and get with a podiatrist for a prescription.

    • Anonymous
      April 26, 2007 at 9:53 pm

      I hope everything works out with your SSDI, and your health improves quickly.
      Let’s know how things go.

    • Anonymous
      April 26, 2007 at 10:04 pm

      Hi Mac,

      My thoughts and prayers are with you. It’s not easy making such a life changing decission, as we all know too well. Good luck with SSDI, I know it will help you. We are all here to listen and support you on any issure we can help with.


      Lupus 1989
      CIDP 9/05

    • Anonymous
      April 27, 2007 at 10:35 am

      I wish you the best of luck and success in getting SSDI and finding the right treatment.

    • Anonymous
      April 27, 2007 at 11:46 am


      Best wishes on the next chapter of your life. My thoughts and prayers are with you.

      I, too, have a very supportive spouse — I couldn’t get along without my husband. He’s had to pick up so much since I’m limited in what I can do around the house. Having a great caregiver makes all the difference.:)


    • Anonymous
      April 27, 2007 at 11:50 am

      Good luck I also posted a reply on your other post. Hope all goes well for you and your wife. Keep smiling. Read my reply if you get a chance.

    • Anonymous
      April 29, 2009 at 6:55 pm

      [QUOTE=Dawn C]Good luck I also posted a reply on your other post. Hope all goes well for you and your wife. Keep smiling. Read my reply if you get a chance.[/QUOTE]

      Its been a while since I posted about SSDI but I had a very easy time getting apprroved. It’s been 18 months since I was accepted and 5-6 months until I am eligible for Medicare. I didn;t have health insurance for about 10 months but have been covered by my wifes in the last year. However, I haven’t had any treatment (IVIg, Rituxan etc.) for about 3 years and I’m scheduled for an EMG (this will be my 6th in as many years, do I ned to get it done again or should I decline and give my results from two years ago?)with a new Neurologist. Last week I was VERY weak and went to the ER and was admitted for 2 day and 3 nights. I met by a Neurologist and an Occupational Therapist and I really need to get back started on IVIg. Has anyone been through Plasmapherysis??? I have not tried that yet but I know IVIg gives me the headache/nausea and I’m nervous to repeat. I know about infus rate and pre meds but is there any other options???

      Luckily my friends have started to organize a Benefit in June but with a 2 1/2 year old I need to as strong as possible. My dexterity is gone in my left hand and I am slowly getting so weak in my legs so bad that I am tripping even in my AFOs.

      Has anyone tried adult stem cell clinical trials????

      I know this message went all over the map but I’m reseaching frantically and don’t really know where to start.

    • Anonymous
      April 30, 2009 at 7:34 am

      God luck Mac! I hope that you get lucky getting the SSDI! May take a while before you get approved but don’t get discouraged and fight them every way. SSDI can be a pain in the tail getting on! The first 6 months you normally get denied. Everybody gets denied. Then you appeal. But if you can go ahead and get a lawyer after you get denied and make sure you have all you medical records available! They will send you a questionaire to fill out. And the questions will be different asking the same thing over and over again! Took me two years to get on SSD. And I had to fight everyway. Had doctors say I could not work and yet they denied me! After the second year I hired a lawyer and one week after I hired that lawyer I got approved!
      good luck Mac! Hugs
      Linda H

    • Anonymous
      April 30, 2009 at 8:11 am

      look up Alice on here. She is trying to do the stem cell but having a heck of a time getting the ins to pay for it.
      That’s the prob…they have these “research” things but no funding for them.

      I saw that you’d been to the hosp. I’m glad you’re home.

      I WILL talk to you soon.


    • Anonymous
      April 30, 2009 at 8:55 am

      I was wondering if you have contacted the foundation to find out how to get free or low cost IVIG. I know there are programs out there. Most of the IVIG manufacturers have programs for people who are in your position. I think it’s worth a shot to at least try.

      Good luck with the SSDI.


    • Anonymous
      April 30, 2009 at 8:08 pm

      I hope you are able to get your SSDI 🙂 …Keep in mind it can take awhile and even years to get it .
      I have not had plasmaphereis however I have had seven years of IVIG and my suggestion would be to skip the test that are used for diagnostic and try to get the IVIG ….. even though you feel lousy afterwards that is what is going to keep it at bay ! I think we have all been there and no its not my favorite thing to do however I know its a neccessary “evil” . Dont get me wrong … I am so thankful there is something out there that gets me on my feet again ! Have you talked to your doctor about a 3 day treatment rather than a 5 or 7 day ? Since you are in a bind financially it may be a little bit more economical . At least it would be something at this point . Hope you get insurance soon and things work out for you 🙂

    • Anonymous
      May 12, 2009 at 9:26 am

      Good luck. If you need any info there is alot in the thread I made about filing for SSD.
      In 2 years you can get Medicare too which should be a big help. I had what I thought was great insurance but $2000 in visit copays a year plus a few hundred in prescription copays per month were killing me.

      If you use Accredo for home nursing IVIG treatments they have a program to make it affordable. There are income limits – not sure what they are. Basically I owed them a few thousand from when I had UHC as my insurer and after applying to that program they just erased that.