SSI case

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.

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.

Rhonda,

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
HUGS

Nicsmom:

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.

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?

thanks
me

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.

Thanks.

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!!!!

Lori

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.

HUGS!

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.

Hugs
lori

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.

~Lori

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.

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.