New coverage: I have my new medicare... - My MSAA Community

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Fee09 profile image
7 Replies

I have my new medicare provider. I saw my general this week. He set me up to see the neurologist on the 19th of this month. I am excited to get a definite determination of my MS. I am not sure if I have RRMS or PRMS. I just know that I am walking, but my nerve pain is becoming less manageable and my cognitive skills are glitchy at best...lol!

I do admit, even if I get a new diagnosis all together I can accept that too. I just want to get some relief.

I'm not depressed at the moment, just anxious. I hope for great blessing.

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Fee09 profile image
Fee09
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7 Replies
WAshingtongirl profile image
WAshingtongirl

Fee09 , it is so good to hear you are doing better these days. I am sorry about the pain, though. I truly hope your new neuro is able to help you get tha pain under control. And the cognitive issues? Those I can relate to. 😉 I pray your doctor gives you the answers you seek, and that whatever he tells you, you indeed are at peace about it. I know we can prepare ourselves and think we'll be okay, but sometimes we can still be overcome by surprise or fear or sorrow. Don't be too hard on yourself if you don't react as you expect yourself to. I've been there ... it took a little longer to accept what I was told, but peace did come... I'm hoping you are blessed all the way around by your new provider and upcoming neuro visit. 💕

greaterexp profile image
greaterexp

Fee09 , we will be hoping for good news and better treatment for your pain. I hope you'll let us know how it goes.

bxrmom profile image
bxrmom

So glad that you have a new Dr and that you have a Neuro appointment set up so quick as those appointments (specialists) tend to by farther out. Please keep us updated!!

Jessie

Jesmcd2 profile image
Jesmcd2CommunityAmbassador

Hi Fee09 Keep us updated! And don't forget to take your journal, notes or whatever you use to keep track of symptoms. And a list of your questions.😊

Jes 🌠

"... I just know that I am walking, but my nerve pain is becoming less manageable and my cognitive skills are glitchy at best...lol! " I like that you can laugh at the MS crap. It is the only real way to deal with the MS. In the mornings I have to take a few pains meds two hours before I want to get up because I have so much pain in my feet and legs.

"... I am not sure if I have RRMS or PRMS. ..." more than likely RRMS or SPMS .

[ nationalmssociety.org/What-... ]

Early in my RRMS diagnosis I believed I was in SPMS. I expressed this to my neuro. Her answer to me, yes you probably are, but if I were to make a diagnosis of SPMS I would have to stop helping you are there is no known treatment for SPMS. At least if you were diagnosed with RRMS, I can try to help you.

I have had some fantastic help from my doctors because I had RRMS. Had I insisted of being dx with SPMS not only had the doctor been prevented from treating me, but medicare/medicaid may have denied coverage for any treatment. Now many years later there is hope for the more progressive forms of MS, however still no treatments except for the recent FDA approval of ??????? [brain fart] LOL. Politics continues to screw with us.

I'll have to look you up since you are fairly close. Got to get some sleep now. My thoughts will be with you as you proceed on your new journey into the unknown [aka twilight zone]

Ms-Indestructible profile image
Ms-Indestructible in reply toMs-Indestructible

forgot to mention, when you are dx with one of the four forms of MS, you stay within that category, with the exception of RRMS [85% of MSers are here] of that 85% about 10-15% will move into SPMS at some point in their journey ~cheers

Fee09 profile image
Fee09 in reply toMs-Indestructible

Thanks for that information. I was only told that I have a rare progressive form, that less than 20% of MS patients are diagnosed with. I may continie to have these relapses every few months and continue to slowly lose my ability to walk or I could have a bad relapse and never walk again. So this is what I've been living with 2013

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