Disability question

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Psoup
New Member


Date Joined Dec 2008
Total Posts : 8
   Posted 12/14/2008 10:26 AM (GMT -6)   
Hello. This is my first post and was wondering if anyone has any input about my concern.
 
  I've been diagnosed with ms not only by my neurologist, but by the one that the government sent me to when I applied for disability (for the record when I told him everything that was going on he tells me, "I hope you get this, you need it."  I feel that this long process is almost over, but they want me to go to a psychologist next and I was wondering if that was a normal procedure  that they request to all who apply or if somewhere along the line I said something that freaked them out. I don't know.
 
  I will go to this psychologist I guess, but I'm not exactly sure why I need to, or what to expect from him. I'm just wondering if it's normal for people to be sent to them when applying for this.

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3537
   Posted 12/14/2008 2:01 PM (GMT -6)   

Hey Psoup,

Welcome to the board.  I really can't answer your question.  I just wanted to come and say hi and show support.  I hope it all goes well for you.  I think you should take a deep breath and remember that you are in the right here.  Don't let this rattle you.  Go and clearly explain your very worst symptoms and the reasons you can't work. Answer any questions they pose to you.  Ask them why it is you needed a psych exam. 

If you are not granted SSDI, then find a lawyer and try again.  It can be a tough process but it sounds like you are well on your way with the support of their doctor. 

Please keep us posted as to how you do. 


Gretchen       co-moderator MS board       diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


Psoup
New Member


Date Joined Dec 2008
Total Posts : 8
   Posted 12/14/2008 2:54 PM (GMT -6)   
Thanks for the reply. I feel like even tho this is taking forever to get a conclusion, it's looking better than being
rejected early.


I noticed in another thread that you take Copaxone, and I understand that it slows down ms by 1/3. May I ask if it makes
you physically feel any better? From what I understand it varys from person to person in how it affects them.
I haven't started the medicine because it costs like 2k a month. I just recieved a form from them about benifits that I haven't filled out yet. I hope to start it soon tho if it. Right now I take valium wich does help with dizziness and bladder issues.

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3537
   Posted 12/14/2008 3:52 PM (GMT -6)   

Hey Psoup,

The copaxone does not treat symptoms at all.  So technically it does not help me feel better.  I feel better that I am trying to do something about this blasted disease.  As I am sure you already know, there is not really any great med.  I am pretty stable since starting my copaxone.  I have had one flare since starting copaxone.  Other than that, I have remained stable.  I have only been on it for a little over two years.  I am pretty new to MS so I am far from an expert.


Gretchen       co-moderator MS board       diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


Psoup
New Member


Date Joined Dec 2008
Total Posts : 8
   Posted 12/14/2008 4:54 PM (GMT -6)   
Thanks for taking time to answer and I don't mean to pry. Well, I was hoping copaxone would control symptoms and maybe I wouldn't even need assistance after that, but it sounds like that won't be the case. I need to get it anyways soon just so it doesn't get alot worse. That would be unbearable.

Again thanks, and I wish everyone the best who is dealing with this.

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3537
   Posted 12/14/2008 9:34 PM (GMT -6)   

Psoup,

Pry away, that is why we are here.  We want to support you.  I take both a progression therapy (copaxone ) and meds for symptoms.


Gretchen       co-moderator MS board       diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


Tertle
Regular Member


Date Joined Jul 2007
Total Posts : 108
   Posted 12/15/2008 2:26 PM (GMT -6)   
Hey Psoup, welcome to HW. There are alot of people here that know alot of stuff so don't ever feel discouraged to ask a ?

Anyways I am on SSDI and it only took me 4 months to get approved. Way faster then I ever thought, other people have different results. Good luck though. One other thing, try calling The Chronic Disease Fund, I don't have the number off hand. But they approved me and paid for my Copaxone 100%. I no longer have it but do strongly suggest trying it. The deliver right to you door also.

Keep it touch and good luck.
-Tertle(Andy)


Motown John
Regular Member


Date Joined Jun 2005
Total Posts : 475
   Posted 12/16/2008 8:59 AM (GMT -6)   

TTuesday a.m.

I applied for and was approved ON MY FIRST APPLICATION!!

 

Half the commercials on daytime t.v., are from lawyers looking to help you withn SSDI applications. yeah

Lucky, I am.

 

Motown John

 


DX'ed June 21st, 1987
 


Psoup
New Member


Date Joined Dec 2008
Total Posts : 8
   Posted 12/16/2008 11:53 AM (GMT -6)   
Thanks for the support. Did anyone have to see a psychologist before being approved?

I'm also a little confused about relapses. I'm really trying to do my research but there's alot to check out and I can only look at the screen (especially white backgrounds) for a short while before I start feeling really dizzy.

I never actually feel normal, but around night time, there's always extreme dizziness to the point that I feel like I'm going to pass out. I've never passed out (mite have if I don't go to bed right when this comes on), but it's a horrible feeling. I think that most people here know the feeling? Is that what you consider a relapse? I ask because I'd like to identify a relapse when it happens, and if that is the case, am I relapsing everyday?

I know these are things to ask the doctor, and I will, but I have only seen him twice I think, and there have been many things to ask so far, so I forget to until I'm at home and think, "I should have asked him that!" redface

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3537
   Posted 12/16/2008 7:50 PM (GMT -6)   
A flare is considered a new symptom that lasts longer than 24 hours or an old symptom that is markedly worse for more than 24 hours.  Since your symptoms happen every night I would say that those are from fatigue.  Do talk to your doctor about that though. 
 
Dizziness is a horrible symptom to deal with.  There is just not a lot you can do for it.  Good luck.
Gretchen       co-moderator MS board       diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


Psoup
New Member


Date Joined Dec 2008
Total Posts : 8
   Posted 1/15/2009 12:48 PM (GMT -6)   
Hello again.

Well, I saw the phycologist that they wanted me to see. (scary waiting room by the way)

Anyways, I was there for three hours taking tests ranging from math, memory, current events, just a whole lot of different tests. I had no idea I'd be doing this for that long before I went. I don't know how I scored or whatnot, but to me my math was average, my memory was mediocre, but the dr said he was impressed with my vocabulary. I don't know why, but that's what he said.

I've been told by someone online that they probably want to make sure the disability is not wrecking me emotionally. (It's not, I've accepted that I'll probably never get married or have kids. Not because I can't find anyone, but because I feel terrible most of the time and just want to live out my days as stress free as possible. The smallest amount of worry or stress will bring on these symptoms

The phycologist also told me he has a friend with MS who is a lawyer, this and that. Seems like he was trying to get across that, "You can do it!"

I know alot people with MS have jobs and families and are somehow able to cope with everyday life. I personally can not do this.

To give some examples of why I applied in the first place, when I wake up, I need about 3 hours before I can even talk to anyone because it feels like my brain is swimming in the ocean or something. After a while I can feel a bit better say around noon.

I try to excersise a little on days when I feel I have any energy, but sometimes get too fatigued to just from doing slow warm ups or stretching. I eat the best I can for the record, no fast food, v8, egg whites, ect.

Bladder is another big issue. When I have to use the restroom, I don't have much warning. I'm guessing it just leaves the bladder goes through the pipes and I have to clinch to keep it in. I give myself 1 minute at best to get to a restroom fast because it's coming out whether I'm ready or not. I hate to drive because of this.

Then there is the dizziness, I think we know how messed up this is.


I would love to have a job and do things on my own, but I just physically can't. These symptoms are there everyday, maybe it doesn't last all day, but I will randomly feel god awful at some point during each day to the point that if I have to walk, I'm basically stumbling around. I don't drink because it makes it extremely worse. Even a part time job would be too much to handle because the symptoms come at unpredictable times.

Maybe I shared a bit too much or maybe not enough, but I have this feeling that after the visit, they mite think, "This guy is mentally ok, his limbs function, let him work."


This really mite come out the wrong way, and I hope it doesn't, but you know when you try to tell someone about the disease that really doesn't understand how you feel? Well, when I read about people with MS having families and careers, I think, "They must not feel like I do because there's no way I could juggle all that. I can barely make it through the day just hanging around doing this or that on my own time. I hope that doesn't sound insensitive to anyone because I don't mean it to.


This whole long process of disability was looking like things were going to be ok according to their neurologist. But, I'm kind of worried now that I went to the phycologist. Maybe I'm just being paranoid, but if this doesn't work out, I'm in trouble.


Thanks for reading.

jirish
New Member


Date Joined Dec 2008
Total Posts : 18
   Posted 1/15/2009 1:18 PM (GMT -6)   
Hi! I know of a few friends that applied for SSI and they all had to see a psychologist before receiving it so I think it is a pretty normal procedure. Thanks and take care

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3537
   Posted 1/15/2009 5:58 PM (GMT -6)   

Hey Psoup,

No worries on the length of your post.  That is why we are here.

You sound like you are feeling guilty about not being able to keep up some MSers.  Everyone is different.  Everyone is affected by MS differently.  You do need to make sure that your doctor is aware of all of your symptoms.  There are a lot of very successful meds that can help with the brain fog you have in the morning (very common in MS) and the bladder problems can be helped with meds as well. 

Remember, if you don't qualify for ssdi the first time around, you can always appeal.  I wish you the best of luck.  Let us know how are doing.


Gretchen       co-moderator MS board       diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


bohuck2
Regular Member


Date Joined Dec 2008
Total Posts : 196
   Posted 1/16/2009 1:42 PM (GMT -6)   
Good advice Gretchen. It really angers me when people tell me "I know so-and-so who has MS and he is doing fine". They don't know that there are different stages of MS, and when someone is first diagnosed doesn't mean that he has Relapsing/Remitting, he may have had it for years and it was just discovered by a doctor after he was already past the Relapsing/Remitting stage. That's what happened to me, but my Neuro diagnosed me with RR MS so the insurance would help me pay for the medications I had to take. I have since been diagnosed as having Primary Progressive MS.  Yes, MS is a very brutal condition and we just try to make the most of it the best we can.


 
 
 
 
                                        Chuck the old man :>)
                                   AMWTP Training Instructor
                                          Idaho Falls, Idaho
                                  Diagnosed with PPMS May, 2006
                                   but still working at the present.         
                Tried just about everything there is for MS, including Tysabri
                               Waiting to start Cytoxin Treatments soon.


Beau2006
Regular Member


Date Joined Apr 2006
Total Posts : 388
   Posted 1/16/2009 2:25 PM (GMT -6)   

Hi there Psoup....yes, it was suggested that I went for councelling way before I was dx with MS. My family doctor believed that I was riddled with anxiety(never had it before and I am 53) that was causing my vision problems and the spacey dizzy head feeling i was getting.

So I went.....after seeing this person a couple of times, she determined that I should not be there until all other medical avenues have been explored and thusly eliminated.  She wrote back to the doctor telling him that I did not become anxious and then experienced symptoms, I would get symptoms and then experience anxiety, due to the fact I did not know what the heck was going on!!!!

Copaxone - I have been on it for 14 months.  It took awhile to kick in, but when it did, I began to feel better and better.  The copaxone does not treat the symptoms, but does treat the disease, and hence, the symptoms, at least in my case were minimized. I am pretty much symptom free now, unless of course I become overly fatigued, or become exposed to heat - both of which will bring on the symptoms.  As I type this i have full feelings in my fingers - however at a moments notice, the fatigue could hit, and my fingers will begin to numb and tingle.  Same goes with the heat in my office, if it takes a sudden jump, I will begin to get too warm, and then again the symptoms will flair....

But if there was ever a success story with Copaxone, I guess I am it, cause it has done wonders for me - it just takes a few months to begin to kick in

Have a nice day

Gary


Psoup
New Member


Date Joined Dec 2008
Total Posts : 8
   Posted 1/17/2009 10:27 AM (GMT -6)   
Thanks for the replies. I am not taking Copaxone yet but I want to. I did have anxiety and didn't do too much about it until I discovered Xanax. I had always been kind of afraid of the med, but it did handle the anxiety, that's for sure. I was scared of it because it worked very well, but had heard eventually you would have to take more and more, so when the family doctor would prescribe 1.5 mg per day, I would only take .5 per day because that's all it took.

Then I get the MS symptoms and have no idea what's going on. I honestly hadn't even heard of ms before my dr said my MRI looked like ms and that I should see a neurologist. He recommended I go to Baylor University. He said they specialize in MS but it was downtown, instead I went to a neuro that was very close to me.. and close to his office too wich seemed strange that he wouldn't just send me to that guy. I wasn't sure why but he was right. The neurologist that was near both of us ended up wanting test$ and more test$ and in the end didn't even diagnose me. Now that I really think about it, from the looks of his office with med ads all over, it seems like mostly what he did dealt in sleep disorders.

So I sat on it for months thinking well maybe it's something else, maybe if I take better care of myself this will go away. It never did. So months later I find out that now a Baylor grad has an office kind of close to me. So I give it a try. This guy didn't even need to see anything except the MRI, he told me right then and there, "There is no doubt about it. You have ms." he pointed out all these lesions to me on the MRI. So I was relieved and scared at the same time. You know, relieved that I finally know what the problem is. He wants me to take Copaxone and I have no problem with that at all. Things are looking up, till I find out how much it costs. I didn't know it at the time but I went to get medicaid thinking they would take care of it, the medicaid folks told me I have to apply for SSI before I even apply with them. So then I'm told medicaid doesn't pay for Copaxone. Well, that's interesting but atleast maybe the SSI will help out with the costs. So that's where I am now.


This psychologist kept asking me questions about anxiety and what I was doing from one time period to another. I told him, "yea, I had anxiety but when MS became an issue, anxiety went on the back burner. I have a bigger issues to deal with now. (that's just me.)

I'm wondering if I could be rejected for the anxiety I had in the past. Because as far as anxiety goes, that's the last thing on my mind now. My neurologist told me I shouldn't take valium (for ms symptoms) and xanax at the same time. So I'm almost out of xanax anyways and was never taking much of it to begin with so I don't think I'll have that much of an issue when it's gone. I basically had a small stockpile of it since I was taking about 1/3 a day to what was prescribed.

I just hope they can realize that yes anxiety was holding me back years ago, but has nothing to do with the ms symptoms that are holding me back today.
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