SSDI.. whaaaa?!?!
 

:D

I bet you know what^ ^ that^ ^ means!

Yup! I just received my letter saying I was approved!!!!

Its been a long battle but I did it. All by myself too!

They screwed me on backpay but I don't even care cuz I can see a REAL doctor now! Woop Woop!

Soooo im not really sure how this works...
Im assuming I take this paper to dept of human services and apply for medicaid?

After I woke up to electrical shocks on the right hemisphere (which have still not stopped) , it was definitely something I needed to read!

Im so happy.so so happy!

Congratulations! :) I know this has got to be a relief for you. I'm not sure what your state's laws and rules are for Medicaid and SSDI but there's probably a phone number on the ppwk you got with your award letter.

I know how relieved I was when I got the award letter. I had to wait 2 years for Medicare to take effect but when it did I was ready to use it!

I hope you find a good Neuro who will listen to you. That's half the battle. :)

That's excellent AnyaDee. I'm so happy for you. It has no doubt been a long uphill battle with a lot of worry. Glad that you can relax about it now :).

With love, Erika

i am soooo happy for you. i too remember how relieved i was when i got approved. and i got turned down the 1st time and had to go the lawyer route.

i'm looking forward to hearing how the real medical care is going.

Great news!

Happy Dance while holding the wall.;)

Celebrate. Such a relief!
ANN

I googled "Why does Medicare take so long after getting SSDI" and www.disabilitysecrets and that was one of sites presented. I don't have to go on Medicare (have DH's insurance)so did not read. Good luck!!

Don't just accept that you got "screwed out of" some of the back pay. Contact them and ask about it. If you are due more money, then by all means you deserve it. If you aren't due, you will understand why it seems like you were "screwed." Don't be intimidated or shy--just ask!:)`

Congrats! I hope you get some good care lined up pronto.

Yeaaaa Ayna, Super!!!:D

•If your claim is approved 24 months after application, you will be entitled to 12 months of Back Pay (even though a 24 month waiting period less a 5 month waiting period is 19 months, the limit for Back Pay is 12 months).:hug:

For anyone there is a 5 month "no pay" rule. After that you can only draw up to a 12 month amount. Years ago, you could get a lot of back pay.....not anymore......12 months only if you have waited long enough for your approval.

If you are not making very much, check into drawing a supplemental amount called SSI. Talk to your local Social Security office and make sure you do not qualify for other things.
Congratulations!

I didn't get Medicare card in Illinois until 12 months later. I actually have excellent insurance through DH and don't need it but I must take it due to taking SSDI payment.

Thank you everyone :grouphug:

I am so stoked to be able to see a real neuro/doctor!

I could be wrong, but I feel like that's why I have received such crap care.. having to deal with temporary public clinic docs who hate their job and don't care.
I am so excited to find a doctor, have he/she sit down with me and go over all of my past and current symptoms. A doctor that will know all of my history instead of Tid bits.

I am sending a huge thank you to all of you for all the advice, support, and encouragement that you have all given me!

MS is super crappy. But at least I have a wonderful online group that understands completely how difficult and frustrating this disease can be. I appreciate each and everyone of you so very, very much! :D:grouphug:

Awesome!!! I'm so happy for you. I'm glad you will now be able to breathe a little easier.

As for the letter, I'm not sure how your Medicaid office works as each state is different in regards to Medicaid. I was on Medicaid for a while before I got on Medicare. Check with your local health & human services department, or what ever it is called in your state, and find out how you can get Medicaid. I have both Medicaid and Medicare and it helps so much. I hope you will be able to get on both. I know you got a letter saying you were approved for Medicare. Did it state on there when it would kick in? If not, you can always call CMS and ask them. I've always had great luck in dealing with them. Their number should be on the letter.

Once you know exactly when your benefits start, schedule your appointment with a real neurologist, not one of the ones you have been seeing.

Keep us updated and, again, Congratulations!!!!:hug::hug:

Thank you so much! And it most definitely has given me so breathing room. I feel like a.boulder was lifted from my chest.

The letter said that after being on it for 2 years, that ill be able to get medicare. So I went up to dhs the other day with the letter and applied for medicaid . Said id be hearing back in aweek. Caseworker said that ill get it for sure now.

So what's next you might ask?

Researching the best doctor for me and confirming they take medicaid.

Excited! But how does one make sure they have found the proper doctor?

I read the reviews on my first ms specialist (who was an errogant, mean person with very careless, insensitive nurses) and they were positive reviews but about 6 yrs old..

So that makes me nervous going by the reviews. That doctor didn't even care to know what was happening just wanted to put me on solumedrol or prednisone. And the max time of being in the actual office was 15 minutes (that was once, otherwise it was 5-7 minutes).


So for you, was it a trial and error process of meeting them and deciding they weren't right for you? Assigned and got lucky? Or if researched them, did you just google it?

The feeling of finding someone that will know my history instead of tidbits is so exciting! :D And I haven't even found one yet! lol

My abdomen and legs are still super numb. And still having those wicked awful unknown episodes so I'm hoping this isn't the new normal. Since its been so long im kind of used to it.. but hoping it just one day goes away :cool:

Getting a good Doc is usually a matter of trial and error or just
plain luck. I hope you are very lucky your first time..:hug:

I agree with Sally. Getting a good doctor is a crap shoot. For me, I liked my first one best and she was female. I could talk to her better. But then I moved far away. My new doc is a guy....has the personality of a stone....but seems to know his stuff. The other thing is I really like my new doc's office staff and nurse. That can be a huge plus too. I can call or fax them any time with questions and needs and they respond quickly and cheerfully.

I totally agree with this!! The staff and nurses, especially, are who I interact with much more than the doctor. And I've found that the nurses often know more than the doctors and have a better bedside manner! You just can't ignore the relationship with your doctors nurse because she is probably the one who you will see the most.

Is there a MS support group in Springfield? If so, you could contact them or go to one of their meetings to see if anyone has a recommendation.

Thanks everyone!

Springfield does have an ms group.. however, they all see the same specialist that I first saw. The group is small and im the youngest by far. They are all about pharm drugs. When I went to 1 they were all telling me I need to take baclofen, adderrall, etc. Im not into drugs. Granted I would possibly be going through less suffering, the horribly terrifying experiences I've had on the ones I've tried have kind of ruined me on the pharm drugs.

I do not approve of that specialist nor his nurses.

I went to one of the dinners a while back.. he and his nurse showed up bout 20 minutes late. I had brought my bf with me.was thinkin to myself 'wow, these two look higher than a kite' gigglin like little school girls. When we got in the car my bf said he didn't like my doctor/nurse and that its disrespectful to show up late and high to a dinner for your patients.

Gosh, bringing that memory up really makes me happy I don't see him anymore. :rolleyes:

Well hopefully, ill get super lucky and find a doctor and nurse system that rock my socks off! :D

<3