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1396846 tn?1332459510

PPMS

I know I don't come around like I use to, there are reasons for this but main one is that accepting my dx and moving on is what I needed to do.

With that being said, my Neuro just told me that I have more progressive MS now. So no more RRMS now I'm labeled with PPMS.

I Finally took the leap and applied for disability. My cognitive issues "are a reason for concern" per my neuro. Not sure how we will financially work through this during the application/appeal process but it will have to work itself out.

I was thrown for a loop when the words came from his mouth. I knew I was getting worse without much relief but to actually hear him say it really hit me like a ton of bricks.

Me and dh were sitting here watching tv and I started crying, not sobbing but tears rolling down my cheeks and dh asked "what did I do now?" Lol I told him it's just harder to hear it from my doctor than just knowing it. He hugged me and said don't worry I'm with you every step of the way. Made me cry harder. But I've again accepted it and I'm moving on again. Taking advantage of the good days and listening to my body on bad days. One day at a time right?!

Well thanks for listening (reading)

Paula
20 Responses
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667078 tn?1316000935
Documentation is the key. Having all your records sent. They have to get them from doctors or hospitals or PTs.

Alex
Helpful - 0
1396846 tn?1332459510
I've been dx'd with MS since 2010 and it has steadily gotten worse over time. I applied for my MS not for RRMS PPMS or SPMS, I will go through the process and see what comes of it. I'm a fighter. I have my good days and bad days. Today was a good day, but normally when I have a good day I tend to overdo it because I'm feeling so good and it affects me, like right now laying in bed my legs feel like jello, they are tingling and achy but I wouldn't trade my good day for anything, they are becoming fewer and fewer. I've been working for the past 28 years so it's not as though I'm trying just be lazy. I have an appointment with my Neuro on the 28th to discuss my MRI results and get a letter from him along with copies of all my test result reports.

I truly appreciate everyone's input and support. I will go more into detail on my appeal as we all know that they always deny the first application. I will keep everyone posted as to how it's going.

Thanks again,
Paula
Helpful - 0
5112396 tn?1378017983
Kyle says everything I was thinking and wanting to say here for a few days and couldn't think of how to phrase cogently. Without knowing what you're truly dealing with, anything else is majorly putting the horse before the cart. Hearing the word 'progressive' and not knowing the rest of it is not a place I ever want to be. Good decisions for myself could not be made without a heck of a lot more clarity.
Helpful - 0
1831849 tn?1383228392
Hi -

I think it's VERY important to know exactly what it is you need to adjust to before starting any adjustment.

The difference between PPMS and SPMS is fundamental and enormous. You need to assume nothing relative to your neuro's comments. You need to have a very clear conversation with him about what your diagnosis. If he says PPMS, get it confirmed via a second opinion. You need to be very sure of what you have. I would suggest doing this before filing any paper work that includes PPMS. It will be very, very difficult to undo and will close a lot of doors.

SPMS is a very different, very manageable animal. By the time I was diagnosed I had crossed the threshold into SPSM. I'm 'fine'. I have my fair share of daily "You hve MS" reminders, but I get up every day and go to work. I live by myself and tend to 2 birds and 2 cats. Next Saturday I am riding my bike 25 miles as a participant in Bike MS 2015.

Life with SPMS can be pretty damned good! Be certain of your DX before you start planning your future.

Kyle

Helpful - 0
645800 tn?1466860955
When I did my appeal for SSDI I went to a lawyer for advice and paid him $50. Then when I filed the appeal I used his name on the form as my attorney. So in the end I only paid that $50 instead of the set rate for the lawyers. I have heard  that if you indicate you have a lawyer they SSA tends to not reject an appeal unless they have solid grounds.

Dennis
Helpful - 0
1396846 tn?1332459510
I will go through the appeal process on my own and may get an attorney if or when I have to have a hearing. I don't want to give the lawyer any money if I don't have to. I see my Neuro on the 28th. Going to get a letter stating my MS dx and that my fatigue and weakness is due to my dx. Also getting copies of all my MRI reports and anything else my doctor thinks I may need. Did some research on it and got a list of thing needed to help with a MS disability case. Thank you for all your support!
Helpful - 0
667078 tn?1316000935
They will probably turn you down but you do not need a lawyer. It is what the doctors write that matters. Lawyers can only take so much by law so that is what they charge. Sometimes the NMSS has seminars with lawyers. I went to two. It depends on your local chapter.

Alex

Helpful - 0
11924850 tn?1601364171
Hello.

  I, like you, get angry at the thought of battling for a so-called entitlement when it's something taken out of every paycheck we ever received.

  My sister retired after working over 30 years in a factory and then went for disability which she received without a fight.   She told me that is I ever try to get a Disability to be sure to take copies of all my health records concerning it including Mris.

  Also, I think your lawyer will take a percentage or a flat rate based upon your benefit so make sure you understand and have in writing how much the lawyer gets.

  Blessings,

  Melinda
Helpful - 0
Avatar universal
Mirroring the comments above, you do have volumes of support here.

There are numerous cerebral individuals here involved globally from various walks of life. Individuals who to me are beyond impressive and admirable for there dedication here, courage and strength.

Hugs- :)
Helpful - 0
1396846 tn?1332459510
Thank you everyone!

It is hard to swallow. I'm going to get my MRI tomorrow and hopefully it will show the evidence needed for disability. I know it's going to be a long process. They will send me for cognitive testing, my thing is that it gets worse and worse as the day goes on so I try to make appts early so I'm in a better place mentally, but I'll have to take what they give me because it's a long wait.

Why does thus have to be such a long hard process, as if MS isn't bad enough, having to fight for something I paid into all my life is ridiculous. I think if my Neuro agrees then it should be enough but it isn't. I filed on my own and will get an attorney in the appeal process in case I have to go to court so I'll have him or her fighting for me.

I'll stick around here as much as I can. I just dint have the umpf to do much of anything as of lately.

Thanks again for all the support. Its truly appreciated!
Helpful - 0
Avatar universal
Paula so nice to see you back. Sorry about the progression but hope there will be a drug that works for you.  As far as cognitive issues thats why I had to leave my job in the pharmacy can you imagine not being able to count or add 2 plus 2 together nevermind trying to multitask. I filed for ssdi before I officially got my ms diagnosis long fight but worked out for the best.

You may get approved right away since you are progressing just document everything. I would ask your neuro about cognitive testing if you never had it before its a good baseline and good documentation for ssdi.and if you been tested before testing will show a decline also good for ssdi.

hope you have many more good days and the bad ones just listen to your body . Take care

kat
Helpful - 0
667078 tn?1316000935
I know the PPMS label is hard. I felt like I was skiing down hill and someone took my poles away. That said it had been 6 years and not much has changed. It is starting to get harder to walk and more pain. I go to a good pain clinic which really helps.

The different classifications are not totally accurate because we are individuals. You can still have DMDs if you wish. Many people are still on them with PPMS. I chose not to since I have had MS for over 50 years now. I figure for me the damage has been done mostly in the 1960's.

With a new label comes a new grieving process. It makes it more real. Not that having RRMS is not fun by itself. Most people with RRMS will go into SPMS at some point. With PPMS you just have PPMS from the beginning. It is usually slow until you get into your 50's but I am in my 50's and it is still slow. The disability makes it harder.

Alex



Helpful - 0
12080135 tn?1453627571
Hi Paula

We've not 'met' before and I'm a newly MS - dx RRMS in Feb this year.
Both my Mum (RR onto SP) and cousin (PP) had/have MS so I knew a little before I got the bombshell.

Although I am not in your shoes to truly know how you are feeling, I can try to guess what you must be going through just now and really feel for you. Fabulous to have emotional support at home and work as well as practical assistance, makes such a difference.

It was very brave to come back on with your stark news, but I'm sure you did so knowing those on this forum, old and new, will try to give you whatever additional support and friendship that they can.

Yes, one day, one hour at a time, whatever you need to do. You sound like you have a strong and pragmatic way of coping with things - and allow yourself to 'release' every now and then - good for you, that's a great outlook.

Hope to hear from you every now and then.
Nx
Helpful - 0
14631020 tn?1436545476
I have a follow up MRI in a couple of weeks.  My neuro said if there are new lesions then he would start disease modifying drugs.  He did say they can only treat the symptoms of PPMS.  It does suck big time.  
I'm lucky I have been working here for 10 years so everyone is real tolerant of my ordeal.  We get laughs from time to time out of it, especially when I run into walls!
Helpful - 0
645800 tn?1466860955
The main difference right now is that there are treatments available for SPMS and not for PPMS.

Dennis
Helpful - 0
14631020 tn?1436545476
I know what you mean.  I had one day here lately where I was telling patients to step left and I meant right or vice versa.  That lasted all day!! If I am more tired than my normal I actually speak alien.  My coworkers and family finish my sentences too.  LOL
It's very hard...and losing the ability to learn and remember new things really hurts.
Helpful - 0
1396846 tn?1332459510
Dennis,

I'm not sure, he said progressive MS I just assumed he meant PPMS. Gues I should have clarified. Either way it isn't good.

Going for MRI tomorrow to see how many lesions I have new and old.

Paula
Helpful - 0
1396846 tn?1332459510
Thank you Shannon,

I also work in health care, I do a lot of triage work. My words get jumbled and I get lost in conversation, how much confidence can a person have with their healthcare when they can't talk or think clearly. The fatigue itself is disabling. Its ok with my family they've learned to just finish my sentences lol. Its a hard thing to deal with.
Helpful - 0
645800 tn?1466860955
I'm surprised that he labeled you as PPMS and not SPMS. From my understanding a PPMS means that you never had any remissions.

That out of the way I know how you are feeling. I felt like that not when I got my PPMS DX, but when I tried to get rehab training in order to try to go back to work. After 1.5 days out of 3 days of evaluation they told me to go home because there wasn't anything they could train me to do. At the time I felt like I was doing pretty good and could go back to work at something.  Talk about a blow to your ego. LOL It took a while to get over that, but now I am fine with it most of the time.

Dennis


Helpful - 0
14631020 tn?1436545476
Paula,

I have PPMS too.  It isn't fun.  Right now I am still working full time but I am not going to lie, it is getting more and more difficult.  I have a lot of cognitive issues.  My only advantage right now is that my long term memory isn't effected, just my short term.  I have been an x-ray tech for 22 years and am able to mentally still do it.  Physically is getting more difficult.  I am so tired..all the time and muscle spasms...OMG!  I don't know how long I will last.

I'm not on here much because reading comprehension is an issue for me now.  

I know how that ton of bricks feels and so do a lot of us on here.  You aren't alone.  

Hugs and prayers!

Shannon
Helpful - 0
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