September 20, 2010 at 2:38 pm
My legal aid just emailed me and said after reviewing the cd about my case, he feels there is insufficient evidence that I have a case for disability.
now what do I do? How do I prove my limitations and pain? My original dr said nothing in the records about any disability I assume because he said what he thought was not important to the case. Which I thought was odd. So, now I am sitting here knowing I not only would be unable to find work because things are so rough here, but not knowing if hour to hour I will feel okay enough to not ask to go home. Since we had to break down and ask for food stamps it is a requirement that the “able-bodied” adults in the house work full time or spend the equivalent time looking for work and attending their classes…meaning sitting for several hours (which is one of my limitations). I explained to them my condition and was advised it was best to apply for ssi.
The low down is, being on my feet for more than an hour hurts. Sitting for too long hurts, I have to sit in odd positions to find a way to manage sitting (perching we call it), I dont have the greatest of balance, fatigue easily, stress is a huge contributing factor to residuals, heck most of the time I have to ask a person “what is the right word I am looking for??”. Sometimes the pain is enough to make me take hydrocodone…which does bad things for me stomach wise. And of course I am out of commission at least one week month, and have no idea what the next hour will bring let alone tomorrow. I can barely lift a milk jug or pan while cooking without struggle. I have to ask my kids to help me at the store to lift things. The meds I take often make me even more tired, but help me at least function enough to do the basics around the house usually. How does a person explain this to someone who doesnt see dollar signs in what I have? What is the next step?
AnonymousSeptember 20, 2010 at 6:44 pm
Can you go into Social Security? You might do better on your own. I put my daughter in the car (wheelchair slide board and all) when she first became disabled and let them see her. I had already filled out all the paperwork once but even though I had a case # no one could find it. So, we went in. Made an appt. took another month and went back in again. The counselors are very well versed on what you need to do. Does your state have disability? I found out too late that we should have gone to CA first, but with so much to do and Medi Cal being the #1 thing to get squared away (she had NO insurance), I never did send an app to the state.
I took her physically into the office- it had more impact. Take a list of your meds, they will contact any hospitals you were in for records and SS will contact the docs. My daughter was so disabled anyone could tell by looking at her, that they fast tracked her app, it took 3 months instead of 4! And eventually she got retroactive disability from the time she first applied (actually I did all the work).
Try going in yourself, if at all possible. You’ll have to go back a few times. In fact, even after she got started there was a lot of consternation on their part because we chose the closest disability office (logically) instead of the one SS thought we should go to! It’s finally squared away.
When you want something done right, do it yourself.
September 20, 2010 at 11:11 pm
Thank you. I look normal though. Its the things you can’t see that are the problem and no one seems to believe me. I am going to call my new doctor and see what he has to say, see if there is some way he can evaluate me or something. I am trying for SSI which is different than disability? It is confusing to me. I did ask the attorney if my original records from when I was in the hospital and the following visits and such were all on the CD or if it was just recent things from when I moved to Idaho from CA. No answer on that yet. Not sure if any of it will help my case, but it needs to be in the files as does a new evaluation. Or heck, I could just suck it up and push myself till I totally collapse and then worry about it…which could take a day, a week, or a few hours. Totally depends on what the day has in store for me. Like today, not such a bad day. Some weakness and what have you because I had a busy weekend and was out in the heat and was on my feet too much. But overall, I got some things done around the house and didn’t have to nap or lay down. Tomorrow may be a surprise. That is the interesting part of living with GBS, I don’t know what might come next.
Thank you for listening and I will do some calling and some research and see what others have to say about this as well.
AnonymousSeptember 21, 2010 at 12:20 am
[QUOTE=fairly_odd_mother]My legal aid just emailed me and said after reviewing the cd about my case, he feels there is insufficient evidence that I have a case for disability.
I am confused…cd about my case?
Does that mean someone has put together a cd about you and your medical condition?
Have you been able to listen to or see the info presented?
What kind of evidence are they looking for?
I would try to call them and get more answers.
If they need more medical info have the docs forward more stuff.
Sometimes they try to tell you no in hopes you go away but it is your responsiblity to represent yourself and fight for what you deserve.
Don’t give up, call them back and get them to explain why they feel there is not enough evidence and then prove to them that you need the disablility assistance.
Good luck, Keep your chin up, and don’t give up!
Rhonda from Canada
AnonymousSeptember 21, 2010 at 1:19 am
Lori – has your doc given you a note for the use of handicap parking places? Keep a very detailed diary for a week/month. Do you have anyone beside your husband that can verify what your days are like?
I agree with Rhonda, formally request a copy of your CD/Records. Then you will know exactly what you are up against and what you need to to acquire for your “evidence”. I wish the best for you!
September 21, 2010 at 4:51 pm
Apparently Social Security got copies of all my records from when I was sick until recently and put all the info they asked from me and family and friends along with the records onto a CD that only special software can access, I have no clue what is on it. And to get copies for myself it is pretty pricey from what I was told by the records dept when I tried getting them after my hospital stay. I could even go read them in their special room, but had to pay to do that even, and if I didn’t understand the medical jargon it would cost extra to have it interpreted. I was blown away! I mean I thought it was my record, my info, I could see it and do what I wanted with it since it was stuff about ME. I can try again and see what happens. Maybe they will send a cd I can actually read myself without the secret high tech software.
The attorney says he does not feel I am ‘disabled’ enough to bother with my case because I can apparently do ‘sedentary’ work since the medical stuff he read doesn’t say anything against that. I have been thinking for awhile about asking my dr for a handicap car thing because there are days I really really would and need to park closer. Not all the time, but a lot of it nonetheless. Didn’t know if he would approve it or it was something I had to go thru SS to get. I will call and ask how to go about getting one. I will also be asking if it would be possible for him to evaluate me and give more info about my condition and limitations. My dr’s have basically just been for maintenance, I have only seen the neuro once for my initial exam and one of the results of the nerve test…since I haven’t been able to pay him in a while due to things going on at home and finances, they said they will not see me again if I dont send something. To the best of my knowledge they are the only ones with a nerve test machine and all the other neuros send patients to see them for that test. I am definitely going to start pushing for things because I know what I go thru, my family and kids and a couple of close friends know what I deal with. They see it and help me out and my one friend definitely knows how it has affected me. So they can speak on my behalf.
I know someone who was stressed out from work and was awarded benefits, I know of a drug abuser who got benefits, heard about someone who kept stealing stuff from work places and kept getting fired so he got benefits. Maybe I am going about this the wrong way….I should be a druggie, stressed out thief and then I might get a speed pass through with an Approved stamp on my file.
AnonymousSeptember 21, 2010 at 5:55 pm
doesn’t fatigue count as disability?
do you take meds that impair you and make you sleepy? You are then a liability!
what about IVIG and recovery time afterwards?
Trouble walking and balance?
and plain old stress! Afterall what htey are putting you through is enough to stress anyone out!
You need to write down a bunch of stuff and call them back.
ask what they consider to be disabled enough?
We are behind you!
AnonymousSeptember 21, 2010 at 10:42 pm
The handicap placard form: I printed one from online and took it into the doctor. However, here in good old overcrowded CA (at least near the coast), I almost never am able to find a handicap spot. I have to struggle to find an end spot so that I can put the wheelchair up next to the car. But, we handed the form to the primary care doc with the basic info filled in and she signed it. In CA the placard is good for two years. Go to DMV online for your state and look for a form. There’s another one in CA good for 6 months, that’s the one they gave us at first, meanwhile telling us they (the docs) could not tell us if she would ever walk again!
Disability first comes from your state and then from SSI (Social Security) after your state disability runs out. You’ve been working and you’ve paid into it, the thing is the state will run out in say 6 months or so. So, have you tried going to the state you live in first?
As far as your hospital records, SS people don’t want what you have, they contact the hospital/doctor, based on the info you give them. Sounds like that has already happened.
Yes, you are entitled to copies of your records, but they can charge you. We got records from one hospital, but the County never did give us records. I’ve a good established relationship with the nurses in the Blood Bank at one hospital. They do blood tests before starting the plasma exchange and I get copies of the results before we leave there that day. Then I can share with the other docs.
Can you drive? My daughter cannot. She has some use of her hands now, but I don’t think enough to be able to work. She cannot walk, but that does not mean one cannot hold down a job. But, she has CIDP, not GBS. I think some of your battle is that GBS is considered acute instead of chronic.
Unfortunately it seems that is part of your battle.
My heart goes out to you and I can feel your exhaustion. Keep going back, I know the paperwork is mind boggling I filled it out two times, but keep going back.
September 22, 2010 at 5:33 pm
doesn’t fatigue count as disability?
If it does, then I am in there because fatigue is one of my main issues.
do you take meds that impair you and make you sleepy? You are then a liability!
I am on Wellbutrin, Savella, Xanax (cant drive when I take it, and there are days I do have to take it during the day and not wait till evening), Azelastine (antihistamine….which, yes, makes me drowsy and even the insert and packaging warns of that), and an albuterol inhaler (stimulants send me over the edge, but the shortness of breath and bear hug feelings I suddenly get make the use of the inhaler/stimulant necessary).
what about IVIG and recovery time afterwards?
Don’t have treatments since it is just GBS not CIDP
Trouble walking and balance?
yes, walking gets worse with use and fatigue. I have a slight limp and sometimes end up dragging my feet because my legs just turn to absolute jello. Sometimes I lose my balance and try making a joke out of it, but have actually fallen out of the shower because of it. Find it hard to put on pants without leaning on something most days, sit down to put on shoes and socks. If I close my eyes I sway all over the place.
concentratin problems? I have always been easily distracted, but now the family makes it a point to point it out. I am also very easily overwhelmed and that is when my brain just shuts off. I also forget the ‘right words’ a lot and that is so incredibly frustrating because I used to have a nice vocabulary and took pride in my intelligence. Now i feel as if I am 20 points short of what I used to be…whether or not GBS effects the brain or not, I know there is a marked difference between then and now.
and plain old stress! Afterall what they are putting you through is enough to stress anyone out!
I believe the dr has mentioned in my records about having decreased coping skills with stressful situations. I start vibrating and tingling everywhere if it gets too stressful. Following a particularly stressful event, I am in bed in pain and recovering for about 2-3 days.
The SS dept has stated that since I can sit on my butt and at least type or do menial work, I am not disabled or impaired. I do not understand this and have tried explaining even menial work (even my photography and stuff is limited because of what I can tolerate on any given day. And that is just for fun, not an income) is difficult depending on the hour or the day.
Thank you for your support. I am definitely going to go forward with this and insist on seeing one of their doctors.
Today I woke up to my lower back aching across my hips, my legs feeling numb and aching, my ankles and Achilles tendons hurting. Does that scare me? YES! Especially when my feet and legs go to sleep no matter what position I have them in (that part started yesterday late evening and I didn’t do anything over the top. Took it easy in fact). Right now it is a wait and see, if it gets worse I am off to the hospital in an instant. Even my hands are involved, shaking and numb and tingling. I am hoping it is stress related because hubby is dealing with what we think is kidney stones and is in pain. He said “are you sure it is not your own version of what I am going thru?” AS IF!!! I have much better things to do than get attention by being sick. In fact, I don’t think there are enough words to express how much I hate ever having gotten sick in the first place…although I got to meet a group of great people and have learned so much because of it.
thank you again
I will print out the form and have the placard for when I need it if the doctor will fill it out for me. In Idaho most of those spots are open in most areas. I can drive short distances. If I have to do so for too long or far, it does a job on me. On our move, I had to drive one of the vehicles myself and I think I was running on pure adrenaline (it was after mom had passed, the excitement of a new place, etc) but at one point I was seeing things and radioed hubby that I had to stop because I was having problems. I was hurting and eyes were playing tricks on me. Was scary! We got a room and finished the trip the next day. There are days that I call my oldest son for a ride if it is ‘one of those days’. He is usually more than happy to help out. Other than short trips to the store, or saving up my “spoons/energy” for a short trip somewhere with my daughter, I stay close to home.
The disability part thru the state I was told i didnt qualify for because I worked from 16-20 and then got married and was a stay at home mom and wife for the past 20 years (oh geez that makes me feel old). I couldn’t use my ex hubbys disability because they said we had not been married long enough? Our divorce was final after our 10 year anniversary, I thought according to the paperwork that was a qualifying factor and he also said he would do anything he could to help push that thru for me if I needed help. But they said I only qualified for SSI and the residuals are affects of GBS definitely have lasted more than a year and from what I have read and experienced, I am most certain it will continue. Ugh.
Thank you for the info as well. I will stand my ground. I am shocked at how they treated your daughter. Nice system we have….”we are here to help you, but so sorry you don’t qualify or we will make it very difficult for you to qualify so you will just give up and go away”.
HUGS to you and your daughter.
AnonymousSeptember 24, 2010 at 1:34 pm
I am walking in your shoes right now… awaiting determination for SS Disability. I believe the two docs they sent me to replied with statements that I was physically and mentally impaired. They both told me that it was not up to them for the final determination; however, I am feeling very confident it will come through – doing it on my own and keeping the faith. May be blind faith… I go forward with the grace of God is what I keep hearing in my head.
I sit here now hurting from shoulders to hips to feet. I don’t have any pain meds even though my primary doc (but no insurance) thinks a pain management doctor would be good for me. Also I am single with one sibling helping me keep a roof over my head. I’m applying for mostly part time jobs – may have to make that change to full time (ugh) that i know I will get fired from after missing a few days here and there. And with our horrible economy, I’m being told that employers are getting over 100 resumes for 1 position. Praying someone will see the value in a ‘mature’ employee with low energy level versus the young and energetic.
Oh, and I officially decided to stop paying on my two credit cards – will file bankruptcy in the near future. I was told that creditors cannot touch SS money.
Let’s keep the faith girlfriend!
September 27, 2010 at 8:47 pm
Got info in the mail today…large amount of paperwork. Says that depending on what they determine after sending in the paperwork, I may or may not have to have a hearing.
I got to review the records they have from when i got sick to dec 09. It was actually upsetting to read them because the original hospital stay and neuro does state that my issues were not GBS related, they were anxiety and I needed to seek other help. WTH!? I mean he told me to my face, but to see it in writing and have it held against me right now is enough to make me cry. My newest doctor has little knowledge of GBS and has been for maintenance only. Those were interesting as well. I do not recall ever telling him I could manage a 30 minute walk on a treadmill with no problems. But there it is in my records that I can. I was able to do that BEFORE I got sick, and yes have pushed myself after and paid dearly for it. And the SSI paperwork says I was never married. HUH!? I stated my marriage and when it ended on the paperwork. I am so confused. Oh and the very first nerve conduction study it states that it was negative. The woman doing the test was very rushed and certainly not like the second test I had…although that one shows nerve damage the Neuro says it was mild and shows signs of some sort of polyneuritis but not active. Mild my ass, walk in my shoes and tell me it is mild. All of this makes me really wish I had not been so damn stubborn and had gone back to the ER when things got really scary instead of forcing myself to deal with it on my own. Makes me wish I was more of a wuss and went to the dr for every twitch and pain instead of dealing with it and trying to accept it as the norm. But I made an appt for wednesday with my new doctor and will bring my paperwork with me and ask him about an assessment and help filling out the paperwork, asking about an autonomic test series, another nerve study with a diff doctor than before, and I don’t know what else to ask about. I am tired of playing nice and tired of ‘dealing with it’. I know how i feel, I know what i deal with, my family get tired of hearing about it, yet I am supposed to accept the pain that gets to be so much that I contemplate hydrocodone or oxycontin in spite of how it makes me throw up. Yes some things have gotten better, but it seems as if some things have gone backwards. And I try to keep my mouth shut so I don’t sound like a broken record or a sissy or that I am making a mountain out of a molehill. “Be strong, push through it, you can do it!” yea whatever. I know when I am done for the day regardless of what time of the day that is, it is not in my control.
Anyhow any ideas on what else to do to help my case?
AnonymousSeptember 27, 2010 at 10:56 pm
Thank you Fairly odd mother! I have waitted for over 1 year and still waitting to see a Judge to hear my case. I have been to their doctor and had a negitive (which is good as it proves I am depressed). I have no idea what my records say except for the few papers my dr will give me when I remember to ask. I do have a lawyer to handle everything. As with your writting…I will now get a full copy of all my records that are aboujt me. My lawyer informed me that since I will be 50 (Sept 30) and with all my problems I should have no problem getting it. I even contacted my State Senater to see what the office can do — they sent a letter to SS and then I was informed by my State Senater’s aid that I am waitting for a hearing to be scheduled! I told him that I already knew that!!!! Keep persistant with your case. get copies of all your drs visits ask for them. If you get handicap parking permit.. send a copyof it to your SS file/lawyer. I keep calling every month… that way they keep me in the front of their mind. I ask if I can do anyything to get the hearing faster and every time the answer is no … and the status is still waitting for the hearing date. In many cases it takes a year and a half on average to get a hearing.
I have my days like everyone that I can “do everything” and days that I cant do a thing. My life is one of like you said “it is not in my control” Life is planned arround my GBS and Fibromyalgia. I still need to learn to balance life.
Because of my new insurance (state general medical asstance) I have to find new primary dr and all new specialists. I need to show the new dr all the referrals from my other drs.
We can agree that with GBS or CIDP life is never dull.
I would love to thank you and all the others for sharing their life with “us”.
AnonymousSeptember 29, 2010 at 1:14 am
This is just one of MANY reasons that we need to fight for the education of the medical community about GBS. Because so many doctors say that GBS patients usually have a 100% recovery, GBS is not deemed to be a viable reason for SSI. Many of us have problems that no one can see, like pain, numbness, weakness, loss of balance, and extreme fatigue. If doctors continue to say that these problems do not exist, those who cannot work because of GBS are left in dire financial straits.
September 30, 2010 at 2:20 am
I need as much information regarding residuals as I can gather and find. Is there one place to find that? Also looking for the debilitating effects of GBS in people who had “mild to moderate cases”.
One more question…been a bit worried the past few days because the pain in my legs just won’t go away. The pain is the same thing….enough to bring me to tears, and deep aches like a major over done workout with weakness, burning and sometimes it takes my breath away (or I hold it, grit my teeth and wait for it to stop). Lots of twitching in legs and feet, and arms, and trunk. I feel like everything weighs way too much to lift without help (i usually have the kids help at the store just in case there are heavy items or to help get things in and out of the car) but this has been every day objects. Drying my daughters hair made my arms feel weak, making the bed seemed like one hell of a chore that sort of thing. Today I had to run an errand and my right leg felt like I wasn’t pressing the gas properly and my leg ached and felt weak. Should any of this freak me out or should I just chalk it up to residuals? Oh and the trouble swallowing is worse, I have to tilt my head back and sometimes make an effort to actually swallow. Never mentioned this because I didn’t think it was important. Fatigue is enormous, actually had hubby reschedule my dr’s appt today and just stayed in bed. I am not worried about ALS but is there anything else that could be up or just like i said blow it off as a flare up that is being persistent. I think I mentioned my left side seems more affected than my right which was hit harder in the beginning. I keep waiting it out like a ‘good little girl’ and trying to ignore it, but when you lose your balance and almost fall, have to climb stairs and legs feel as if they are going to collapse under you it tends to freak you out even though you are ignoring it. I will be bringing all of this up with the dr as we talk about the paperwork and such and if any testing needs to be done since it has been a while. It is just one of those feelings that something isn’t quite right.
Stress levels at home are normal, other than depression and anxiety that flares up if I get a hormone rush, things seem fine so I can’t figure out what has caused this to flare up or whatever is going on. It started coming on last week, very little and slight but enough for me to take note. Forgot to add about the overlap of Fibro that was dianosed just a couple of months ago. Haven’t really researched that yet, guess I am still in denial.
AnonymousSeptember 30, 2010 at 5:25 pm
I had documention from my neuro, hospitals, & was even sent to other drs. to verify dx & disabities. & different tests that were done. I was denied ss 2 times & then my lawyer asked for a hearing. so I went as soon as I walked in with arm cuff crutches, & sat down he said that I was clearly disabled. HE then asked me questions about my day & my life, ect.
I have a severe case of gbs , Balance issues, limitations on sitting standing computer time ect, & eye problems, cognition problems.
I went to my physical therapy place where I was getting therapy & they did an extensive test on me that simulated work projects it took 3 hrs. & it killed me. If you have something like that test , you should check into taking it so ss will have that info. Get as much documentation as you can so it can be turned into ss.
It took me 2 years to get approved, & they do retro your back payments from the date you became disabled.
October 2, 2010 at 12:08 am
Saw my dr today to ask him where to go from here. After hearing what I deal with, he wants me in to see a neuro for this. A specialist would be the best route to go and to see about the continuing problems. He said is is very difficult to get a neuro to accept medicaid but he has a friend that he can call in a favor to because he feels this is important. He said that it will more than likely be more than one visit and lots of tests so be prepared….also be prepared for a bit of a wait. I will let SSI know of the upcoming appts so they don’t forget my case or lose me in the cracks we all know exist. Dr did agree from what I was telling him that something is going on…and yes admitted there were things I blew off and didn’t want to bother the other doc with because they seemed minor at the time. He told me to make a list, a long one, of everything I deal with and go through, talk openly and totally honestly with the neuro, and there is a good chance it will get pushed thru. This neuro will over ride everything else in the records and his word will be the final say so SSI will have to agree no questions asked. I will be asking about every test possible even if it means another MRI or Spinal (both of which scare me), plus an autonomic series if he will agree to it based on the heart palpitations, blood pressure oddities (today it was 118 over 64. Other times the lower number will be high and the top number lower), bowel and urination issues (totally embarrassing but true and important to note), stomach issues, and hubby woke me up last night because I was having trouble breathing. Snoring but more than that, usually if I do snore he pokes me and I turn over, but this was enough to wake me up about. Anyhow yea, lots of things including pain (got info on that and how long it can last), the fatigue we deal with and what makes it worse when it can hit etc., and some other things to pad my case file.
Now it is a waiting game. Yes I pray it doesnt turn out to be a chronic form of recurring GBS that seems to happen every 4 weeks. Read about it in our “laymans” manual. Scary thing is, guess what? I seem to have a [I]serious[/I] flare up about every 4 weeks and mini ones in between, or should I say ongoing pain and stuff. Wouldn’t that be a hoot. Oh also going to make an eye appt because ever since getting ill, I have had bouts of blurry vision. Sometimes it will last a day or two, others a short time. The doctor I am able to see happens to have a special machine that he can get a good look at the optic nerve to see if there is any damage.
My doc said I definitely have “problems” with depression and other things relating to this and made notes accordingly. I think he was trying to politely say I should see a shrink about this. I guess I should, might help me move forward and let go of somethings.
I shall leave no stone unturned because this will add to our plethora of information here on the site. I am going to fight this till there is no fight left.
Thank you all for your support and info. It is all so greatly appreciated!! I hope to return the favor with things I find out and learn. OOoooo and since my attorney/legal aid dumped me, I don’t have to share the 25% if I get approved. THAT would be a serious God Send!!!!
AnonymousOctober 3, 2010 at 3:56 pm
I will pray for you. Thank you for sharing. It sounds like the stress of all this is affecting your GBS very seriosly. When GBS is cronic with backslides it is CIDP. I am very sorry about all the symptems you have, been there, am there, I have CIDP 9 yrs. now. I feel deeply for you. Praying for you.
October 4, 2010 at 5:17 pm
I am no longer being handled by a lawyer because according to my current medical files (not once did he ask ME personally for any info) he said I didn’t have a case and he would not be representing me. He was legal aid and handles immigration matters as well as SS issues. No prob, because right after he dropped me is when I got the paperwork saying I may be able to get approved without a hearing with the right boxes checked and the proper signatures proving the right things.
I just got a call this morning and will be seeing a new neuro on the 14th in the morning. I was warned he is straight forward and to the point and doesnt hold anything back…I assume this means he has bad bedside manners? I mean I don’t want things sugar coated, but I do want someone to listen and hear me when I tell them what I am dealing with. Also people, strangers mainly, like that make me extremely nervous.
Now my question is, should I ask for the autonomic tests?
What else should I ask about? I don’t want anything left out.
thank you for the prayers and the info.
AnonymousOctober 5, 2010 at 5:29 pm
Hmmm… now I’m very confused. I’m going through the SS process by myself and called the other day and was given the status – that doctors have signed off on the mental part and they are waiting on the physical part to be reviewed. I should have asked if I can get SSD on the mental part (like my sister does). But it sounds like to me that I am waiting on a letter that says I get it and back to what date.
Am I over-simplifying my situation? The guy that I spoke with at SS also told me that there are 2,000 to 3,000 cases in que and that usually gets done before the end of the fiscal year (Oct). No word about a hearing or judge or anything like that.
And the doctor I saw was an internist that observed me unable to walk on toes or heels and saw I don’t have any reflexes. It was pretty simple.
Curious to hear your opinions.
“Going forward with the Grace of God”
AnonymousOctober 5, 2010 at 8:56 pm
Physicians that determine disability aren’t necessarily experts in the illness you’re displaying.Social Security is currently overwhelmed with applicants and trying their best. I have known folks to get SS using an attorney as doing it themselves didn’t work.Most are turned down the first time.
You must show you are NOT capable of work.
Keep all records of office visits–hospital–PT records.Reading them can be upsetting as doctors can write some heart hitting things. Yes, my records had many wrong entries in them too.
Don’t go to any of these doctor visits alone–take an advocate to help keep notes of what was said. If the upcoming neuro visit is with this “straight forward speaking MD” then certainly take someone with you”’
Check the older Forum GBS/CIDP posts pertaining to getting Social Security benefits. Lot’s of great info in them.
** Sending you a PM.
October 8, 2010 at 4:18 pm
I remembered something that sent ice through my veins today. For a few months (not exactly sure how long exactly) before I actually got hit with GBS and went to the hospital, I was having weakness in my arms. I remember finding it difficult to dry my hair (I don’t have long hair) and would have to rest often during the process because it seemed too much to hold them up and the dryer and brush seemed so heavy. I don’t recall any leg trouble except that at one point I do remember having trouble running and just figured I was “too old” to be chasing the kids around. I don’t know why I had not thought about this until showering today, then I was hit with the memory of that hair dryer being so heavy and realized it was BEFORE July 06 and my hospital/tests and downhill slide. Is this important information the doctor should know?? Like i said it really freaked me out to have that memory hit me.
AnonymousOctober 9, 2010 at 4:46 pm
You can tell him about this memory, but I would emphaphize it if it was still a current problem. I would mainly tell him about past problems make clear they were past problems, but really put the emphasice on your current problems, because that’s what they’ll mainly be looking at to determine if your still disabled enough not to work.
I’ve been fortune enough to have same neuro since dx & he has a whole folder of complaints & concerns each time I go. & also things I make progress on. which has been very little to nile at the current time.
Hope this helps.
AnonymousOctober 11, 2010 at 4:09 pm
try getting in touch with the National Organization for rare Diseases. they list GBS as one of their “orphan Diseases”. They may be able to help you get some information and insight into the situation: here is the number:
203 744 0100. They are located in Connecticut, but it is the National Organization. also, sign up for the newsletter and bulletins.
October 14, 2010 at 4:00 pm
drs are a strange bunch. I actually had this neuro explain to me that he did not do administrative work and fill out paper work for people. I explained that the paperwork required by SSI had to be filled out by him because he is the specialist, showed it to him and he seemed put out it was true. I apologized for it being a pain, but it was necessary. We went thru the can you feel this/that, does this feel different than that, walk for me, stand with your eyes closed (hahahaha almost fell), stand on your heels (fell backwards against the table), walk on your heels I could not and told him if I can not stand on them how do you expect me to be able to walk on them? Then on my toes, slowly got sort of up on them and he wanted me to walk….again I tried to take a step and my feet collapsed. Told him I am unable to do so, he had me hold onto the counter and wanted me to jog in place on my toes?! WTH?! I could barely walk in place, and told him there was no way I was able to jog on my toes as he could see I could barely walk in place holding onto something. Explained the depression, the pain, body wide tingling, spots and patches of numbness, digestive issues, urinary issues, blurry vision that comes and goes, nausea and stomach pain, heart palpitations even at rest, he could obviously see how crappy my writing is, he did note weakness when I tried squeezing some tool (actually was shaking trying to squeeze it), diminished reflexes in my left ankle, almost over reactive ones now in my knees and other ankle (they were hard to find before). Told him a gallon of milk is heavy to me. tried to get it thru to him and his “lets hurry up and get her out of here” attitude (knew he was to the point before I went in but sheesh) that it was more than the fatigue SSI was saying was not disabling, it was the pain, the weakness, the not knowing what will knock me on my butt for several days. He did note that I have trouble with stairs and usually make a choice for the day or most of it which floor I will stay on. I try to use them as “exercise” if I can, but there are days I make sure I have what I need and stay either up or down so I don’t have to worry with them.
Anyhow, I have no idea if he will lean in my favor and fill out the paperwork for approval or not. I am hoping he puts it all together and sees that there actually is a real problem. If not, I will look for another attorney and attend the hearing after insisting on a complete battery of tests to further prove what I got going on. There were questions in the packet I don’t know if he can properly fill out without asking me or having a “mental eval” done. Like how well do I get along with people in authority, or coworkers. I can tell you I prefer to be alone, I am easily overwhelmed and sometimes very easily irritated…all of which can come across as being a B****. I don’t always play well with others, hard to when you hurt or are over stimulated.
I am going to put on my cozies and go take a break. Ugh dishes to do….put em off yesterday, can’t do it again. Wonder how much I could bribe the kids with to do them??
I’ll keep you up to date on things if I hear anything.
October 23, 2010 at 7:13 pm
lovely got the paperwork back that the neuro filled out. I was right, he filled out most of it without even testing or asking me about such limitations as how much I can lift, carry, or whatever. Even said I do not require a companion when I go somewhere when I distinctly told him that I rarely ever leave the house alone. I don’t feel safe alone and have to have help at the store when I shop. So the paperwork is not in my favor, LOL not even filled out properly because he stated he was unable to test because of lack of facilities or equipment. I told him about the sitting and standing thing and he stated in the paperwork that there was no issues with that at all. “no neuro impairment” he said on most everything.
I have been writing my own rebuttal but am afraid it sounds pathetic and as if I would be better off putting a bullet in my head. Trying to stand up for yourself or make someone understand who has never been through any of this is next to impossible! What do you do? Keep fighting? Keep pushing? Or roll over and give up because that is what they expect you to do? My ears are ringing I am so upset. The patches of numbness are flared up and my nerves are dancing. UGH!
so what do I do now? Take the paperwork in and know I will be denied and have to appeal again? Does that reset my hearing time since this paperwork was supposed to be the ‘approval or denial’ without a hearing thing.
AnonymousOctober 24, 2010 at 4:24 pm
Did a neuro or reg md diagnisis you ? Try finding a neuro who will work with you. Did you go for pt if so get there notes as well they document what can be done & should document what can’t be done if they asked you to do it.
Check with your local pt place to see about getting a work evaluation test it is about 3-4 hr test I took it & boy was I crying & in pain afterwards, but it helped prove the point. I forget the actac name for test , but it has to do with what I mentioned above.
October 24, 2010 at 9:04 pm
It was a neurologist who I saw. I am going to make an appt with my regular doctor and show him the paperwork, tell him what happened, and see what we can do.
Lately I have almost been passing out when I stand up after lying down. Enough to where I have to hold onto the wall, put my forehead against it and wait till things stop being black and sparkly. Haven’t hit the ground yet, and fortunately we don’t have very many objects in the house that I could hit first if I did pass out. Why would this suddenly start happening more often than not? Today I am putting up with stomach issues. Anything i eat makes it hurt. I have been sticking to greek yogurt and honey or toast and honey and soy milk because I don’t have any problems with that. ugh.
I didn’t go to PT, used daily activities as PT and still do. Although I am sure the two are very different. I can ask my dr about a work evaluation thru a PT if they do that and will do that. What a lot of doctors and people who have never been thru this do not understand is how much it varies from hour to hour and day to day. I read one informational bit that a person should be tested the day or two AFTER the evaluation to see the difference in performance and to prove the fatigue and effects such things have on us.
Anyhow, looks like a long road ahead.
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