Ms has left me wanting!

[Fattius]

Hello my name is Brian Franklin February of this year I was diagnosed with MS after countless misdiagnosis over the last decade or more. This diagnosis has left me wanting to say the least. And by that I just want the pain and depression to go away. Being no stranger to work, I used to be a remodeler and residential commercial painter. Now I have trouble getting a shower and moving about my normal day. With one very small income we are struggling to make it through life only to find out they took my Medicaid away making it impossible for me to afford my medications. I have been without meds for over 2 months now and my neurologist prescribe me gilenya has this medication actually helped anyone? I'm not so sure these seemingly Placebo medications are doing anything anyway. Does anyone have any suggestions on what I need to do? It would be greatly appreciated!

[kate1101]

I just downloaded the app and started reading! I have MS, I was originally placed on Rebif and did fine but I was so tired of the injections and the bruises! I discussed this with my neurologist, he said that we could give the Gilenya a try as long as there were no changes on the MRIs, etc. it will soon be a year. I am scheduled for one year follow up on the 21st of this month. Eyes have not changed, 6m f/up was good! At this point, what is one more pill! I am doing ok! Have not missed a dose!

[Fattius in reply to kate1101]

Plz just be careful. The other week they had the first recorded death from Ocreva or smthin I forget the name

[Fattius in reply to kate1101]

I'm sorry the name of the medicine is tecfidera and it was due to a supposed rare brain disease

[Juleigh21]

Hello Brian! From reading your post, I believe you need some guidance for your MS and insurance issues. MSSA and the national ms society should both be able to lend you a hand! Good luck!

[Fattius in reply to Juleigh21]

Thank yoy

[Fattius in reply to Fattius]

You

[rlh1974]

Hi Brian. I am terribly sorry about all of this and having to meet you because of MS! This is the best support group ever! You can complain, be joyous, tell funny or sad stories. Ask anything to anyone on here! No judgement at all!

To answer your question. You need to apply for disability. Also, state aid. Disability is an awful process and can take for ever. My advice is high a disability attorney. They take a percentage of any back pay you are awarded. Meaning if it take 6 weeks to get approved. You get paid back pay for the 6 weeks and they take some. Normally with MS, it take 60-90 days if not longer to get approved. I was blessed and it only took a few weeks. My employer benefits that I paid for included an disability company. They make it so so simple! The government try's to catch you in lies. The paperwork is so confusing to fill out. That is where my company made it sooooo easy! Google Allsup. I normally don't recommend businesses on here. But honestly they got me approved in like 8 weeks! After being approved unfortunately you have to wait 24 months to qualify for Medicare. So stupid! But you could do the affordable care act or depending on your state there might be healthcare available.

I am so sorry you are fighting this monster we all face! Please feel free to reach out on here anytime! Someone is always listening!!!!

Love you all

Rob

[Fattius in reply to rlh1974]

Thank you! I've been trying to get disability since 2012 and have not been able to hold gainful employment since then. I've had a series of seizures since then that has left me with mobility,sight, and a host of other issues that have reaked havoc on me mind body and soul. Depression has left me lost and afraid. There has only been limited progress made towards rcovery. I guess at least I can walk and talk again. Being a 30 year old man and everybody keep telling me it's weird to be so young and how Ms just makes me absolutely livid! But hey I guess a positive attitude is got me this far!

[Nom_De_Plume in reply to rlh1974]

@rlh1974 Thanks! I will look up Allsup.

Lisa

[WAshingtongirl]

Fattius , we're sad to see someone new join 'our club,' but if you have MS, this is a great place to be. Welcome, Brian! I know everyone here will make you feel at home. You won't find a better, more encouraging group of friends who truly understand you.

I don't know if you've been given this info elsewhere, but here is some prescription assistance info provided by the MSAA. I hope you're able to get some help with your meds. 💕

mymsaa.org/ms-information/p...

[Fattius in reply to WAshingtongirl]

Thank you, and I'm trying just aggravating when you are stuck on cloud 9

[cbella]

I, too, live on a limited budget and completely understand about affording our medications. Are you limited enough to apply for disability? That helped me immensely. I take Tecfidera which I call a miracle drug for it has completely turned my life around and made me feel as normal as I can be. It is expensive but you can apply for grants through different organizations that pick up all of the cost with only a $10 copay. The MS Society immediately helped me to find one once I was prescribed for it. I hope this helps ...

[Juliew19673]

Welcome aboard! Glad and sorry, that you are here. Great group to help you get things straightened out.