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-   -   MG Hell (https://www.neurotalk.org/myasthenia-gravis/95375-mg-hell.html)

Ckitty60 08-01-2009 07:51 PM

Pippi,
I haven't been on for a while so I am just now reading your post. I am so sorry for what you are going through. Please keep us posted on how you are doing and how things are working out with your disability. I will be praying for you as well. Take care.

ckitty

neutro 08-02-2009 04:06 AM

Hang in Pippi!
I understood that you take Cellcept since August 2008? And, as Cellcept could take up to a year to kick in, clearer skies are probably coming…The normal dose is 2 gr a day, how much do you take?
Also, as Erin once said, did you get IVIg or plasmapheresis? These might help but temporarily.
I hope your disability claim will finally get through.
Maurice.

cricket001 08-02-2009 09:31 AM

I am sorry that you are having to go through all of that! It should be obvious that you need disability to a Judge..at least until you are able to get better! I made sure that I took out short term and long term disability at my workplace...just in case...something should happen....I am praying that taking out my thymus in a few months...will put me into remission!!!!

I do not have any experience with trying to get on disability. Right now, I just need a handicap parking permit so that I do not have to walk a mile to Walmart....and then walk around the huge store to get the groceries...and walk the mile back to my car! Whew.....I am exhausted, sweaty, and out of breath by the time I unload the groceries and get home....shopping is a big ordeal for me lately....My sweet husband has been going to the store alot for us lately....:hug:I printed out the form and I am going to ask my neurologist if he will approve and sign it. I am keeping my fingers crossed!:blush:

I wish you the best of luck!!!

motorhead 08-02-2009 10:19 PM

hey pippi,
sorry to hear about your misfortune. it amazes me that with all the bailout programs for people who simply got in over their head they couldn't help out someone like yourself who is truly in need. my neuro has told me from the start that if/when i feel the need he'll sign off on disability. not my first choice, they'd only pay around $500/month. on that i'd be living under a bridge in so. cal.. with medication i can still work. i'm self employed so i can work around the bad days. i'm thinking of working up a 2nd business, maybe internet based, in case my ability to work drops off more. my best to you and your mrs..


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