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.

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

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.

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.

The leg, foot and body twitches were my ‘friend’ when I was first sick. I got so used to them that when they finally eased up, I found I missed the nightly ‘ritual’. But, yes I do know it is worse with stress or if i over do things. Sometimes they are so bad you can watch the muscles move and crawl. Creepy. The facial, smiling thing I noticed by chance recently while drinking a glass of juice. I noticed my upper lip quivering and thought it was odd because I had not had a problem with it before. Then I did a half smile at my daughter and the corners of my mouth were quivering. I also had a strange shaking, spasm, twitch happen with my left arm when i held it up to cradle my head while sitting at the computer. It was as if I had no control over it…freaked me out! BUT changing positions made it stop. Same thing happens with fingers too. Just more to add to the list I suppose. I do know my throat and soft palette are still numb, I have to often tilt my head a bit to swallow properly. Annoying, but something I have come to terms with and no one seems to notice the slight movement or at least are nice enough not to say anything. Wonder if that could be part of the cause of the hiccups?
Haven’t been sick (except for allergies and going off Singulair and onto two new meds. A nasal antihistamine and an inhaler), getting over some major stress (possible cause), and also a few months back yes the dr did give me a “guess what, you have a cross over of Fibro caused by the original GBS, surprise”. So now I don’t know what is GBS residuals or possible cause for alarms to go off, or just a bad fibro day. Have to do more research on that one since they are do darn similar. Ugh.
Thank you for the advice and support. Everyone is so helpful and I find solace here.

~Lori:)