lookin for a friend
AnonymousMarch 19, 2012 at 1:00 am
i am a 32 female that has many questions. i was jus recently diagnosed. thankfully the caught it before it got to bad. i was hospitalized for 6 days and am now doing physical therapy to help me regain what i have lost. here is a short verision of my story. it started in january i noticed i was walkin funny, but was to stubborn to go to the doctors. the end of janury i started falling all the time. so i went to the dr’s and they had no clue they were checkin me for m.s.. so the first week of feb i fell and broke my hand. so i started using a cane to walk not even 4 days after breaking my hand i fell and almost bounced my face off the road hit the cast with face instead thankfully. so then i started using a walker. the doctors werent doing anything by this point i had been to like 4 different doctors none had a clue of what was going on. my hand doctor was doing more then any of them. finally he had enough by this point i had foot drop in my left foot and could barely use my right leg at all. so then i was admitted to danville hospital and they figured out what was wrong. so i have gotten a lil better. but i would love to have someone to talk to that has had a case sort of like mine if there is someone. thank you for reading
March 19, 2012 at 1:46 am
Sorry to hear about it all. So good that you didn’t go down and avoided intubation. Good sign that you were in and out of the hospital in 6 days IMO. Some are there for months. Brutal. Nevertheless, even a so-called ‘mild’ case is scary.
I would be happy to talk to you. Speaking to others who survived or were fighting back helped me. You can ask questions here, and I or someone else will answer. If you wish to chat, contact me at email@example.com and I will respond.
Hang in there
AnonymousMarch 19, 2012 at 3:54 pm
Even though its been over 15 years for me, I so relate to remembering the feeling of walking funny. GBS is a scary illness that only a very few can relate to. This forum is a great place to find friends, support and a place to vent! Unfortunately, this site was down for a few months and a lot of regulars haven’t been back yet. But hang in there with us!!! And if you haven’t been told – rest, rest and more rest is very important. Don’t overdo yourself!
AnonymousMarch 19, 2012 at 4:07 pm
thank you everyone for responding. i am just so confused and scared with this. I jus feel lost i was the rock in my family and now i depend upon them. they are a great support team but its hard for me to lean on them. then I have all my friends and family tellin me I should apply for disability cuz i have no income cuz of not being able to work. I mean my husband gets money but not enough to cover our bills. so then i stress about that also. sorry dont mean to be whining jus dont know what to do. But like i said thanks for responding!
AnonymousMarch 19, 2012 at 8:47 pm
kitze20, you don’t say what treatment you were given but early treatment with IVIG is important. Was your diagnosis GBS? The important thing to remember is that you will improve. At your age you have a very good chance of a full recovery but it will take time and everyone is different. We all understand your emotional condition right now. It is very difficult to accept help when you have been the caregiver, but it is important to remain positive. You can control your attitude even if you don’t have total control of your body right now. This is going to be a stressful time for you and your family. Your folks want to help you like you have helped them in the past. Let them. Work on your PT but don’t overdo it. If your body says it’s tired, let it rest. It is important that you reach a point in your struggle where you take control away from the GBS. It starts with your mind. Read the posts here. Some help. Encourage your support group to visit this site and other sites to learn what is going on. Keep your head up and keep moving forward. Tomorrow will be better than today, each day. Stay strong.
March 20, 2012 at 3:09 am
If you’re family and friends are willing to help, embrace it 🙂 This recovery will require patience and time. But you will see improvements from time to time. Celebrate these no matter how small.
Definitely apply for disability insurance.
You can’t force recovery. You will need to keep active somehow (I liked the pool. Felt good and I didn’t have to worry about my balance). But keep in mind that you will need to get plenty of rest as well. Finding that balance is a challenge for many.
AnonymousMarch 20, 2012 at 9:21 pm
I think you have been given some good advice…..don’t apologize for not being able to be “super” mom…..it’s time for your family to step forward and help support you through this. Getting better is your main concern, and right now, you’re feeling overwhelmed. Don’t get down on yourself! Many of us know the fear of uncertainty that you are going through, it’s normal. You need to know that there is light at the end of the tunnel. Today, what’s necessary is for you to improve a little each day and things will fall in place. It takes more time and patience than you may realize. There are many components for you to get well…..but chief among them is good therapy, family support, and a positive attitude that says “I think I can, I think I can”. As others have already said…..factor in plenty of rest. Wishing good things happening to you.
AnonymousMarch 23, 2012 at 10:14 pm
Sorry to here about your illness and pray for your recovery.
I was diagnosed GBS Dec 27th 2011 and spent one week in hospital for 5 days IVIG treatment after suffering flu-like symptoms with a slight fever just a few days prior . It started in my legs one morning as I was getting up from bed. My legs felt so weak I could barely walk. I thought I was having a stroke at first but felt no pain. Blood pressure was very low and they admitted me immediately. After several test,,,MRI , Spinal tap , Labs etc…they suspected GBS and started IVIG. It progressed from my legs to arms before stopping. Spent week and a half inpatient physical therapy and two months outpatient. Only affected my legs and arms . Got another IVIG treatment March 21st 2012 after my neurologist suggested it might speed recovery. I can walk with a slight foot-drop. Hands , fingers are very weak but improve daily. I feel fortunate to have gotten a mild version compared to what I’ve seen and heard about this illness overall.
I cant stress enough about how fortunate I am compared to the many others who suffered a much more severe case than I.
I continue to have small strength gains daily. I have not returned to work as it requires more physical strength than I am able to perform at this point. I’m praying my leg and hand strength continues to improve to the point I can return to work.
God bless us all.
AnonymousMarch 24, 2012 at 8:20 pm
thank you everyone for al the kind words and advice. I am doing ok but a little scared right now. I have noticed my numbness is up in my knees. dont know if it was there before cuz i was so focused on the numbness and feeling in my feet. so i am gonna call my dr monday and see what he suggests. I am also having severe pain in my left side when i stand. it feels like someone has stuffed a rod in my side. when i walk around my left side is hard to where my right side is not. Has anyone every felt or had anything like that happen to them. thank you and have a great day!!!
March 25, 2012 at 1:30 pm
Ascending numbness is not a good sign. Please get to a hospital, preferably with a Neurology unit.
AnonymousMarch 25, 2012 at 6:16 pm
Hi kitze20, Like you I too have recently had a GBS diagnosis turn mine, and my families worlds upside-down. I am close to 2 weeks out of therapy. I worked as hard as I could through everything to get to where I am, which feels like a dead stand still with my paraplegia. I have had to relearn how to get around the house, and the modifications we could make were free.
I hope you begin your recovery quickly and it maintains a more upbeat feeling for you to hold onto.
Also, if you are having a creeping feeling of numbness, what I started was taking a pen or marker, and drawing a line on my leg to mark about where the numbness ended, and sensation began so I could track it as best as possible.
I hope you recover quickly and fully!
March 25, 2012 at 11:37 pm
You are going to find great support and advise on this site. Your case sounds alot like mine in that there was a long period between symtoms and Diagnosis. I am about 18 months in and was officially diagonosed 3 weeeks after 1st symtoms appeared at which time i rcieved IVIG. Not entirely sure how effective it was. Like you my case is considered “mild”. Keep focused on the fact that you will get bettter. Like you I never lost the ability to walk but for long distance I was being pushed in a wheelchair just 12 months ago. Water classes, weightlifing and just getting out and walking outside on an indoor track were the things that seemed to help me the most. Alot is said about resting and I agree in the early stages in is crucial not to over exert yourself. At the same time to rebuild lost muscle mass takes nutrition and work (exercise).
As many will tell you it is a long and slow road but you will get better.
Take care and we are thinking of you!
AnonymousMarch 31, 2012 at 4:46 am
I was diagnosed on 12/28/10 and my symtoms progressed alot like daveoh. I was in the hospital for 7 days and in an inpatient rehab facility for 2 months. I returned to work at the end of March 2011. I continue to get better and I would say that I am now about 90%. My hands and ankles were the most effected and at one time I could not even hold a cup of water or feed myself. I was not able to walk for the first 6 weeks or so and when I came home from rehab I was in a wheel chair and had to use a walker. It all feels like a bad dream now. I am almost 100% normal right now and no one could tell the I had GBS by looking at me. Just do not give up and keep working hard to get better.
AnonymousMarch 31, 2012 at 2:55 pm
so not happy called the doctor. first they tell me i will not be seing the doctor i seen in the hospital. told me the only way i can see him is if iam admitted to the hospital. so that upset me. then i proceed to tell them how i have been feeling. they act like its nothing and tell me i can’t get an appointment intil april 12. So that really upset me. so i guess i will deal with it and if it gets to bad i will go to the e.r…….uuggghh so not happy right now!
March 31, 2012 at 7:11 pm
These days, hospitals have their own doctors, and general practitioners do not go to the hospitals, so you will not see the same doctor inside the hospital as out, except for specialists. A neurologist should have hospital privileges, so if he or she puts you in the hospital for a neurologic condition, you should continue to see the same doctor for that condition, and hospital doctors for everything else. The key is to get a neurologist who understands the condition and how best to treat it.
AnonymousApril 1, 2012 at 12:54 am
i wouldnt be so upset about it. If the paperwork would of said that i was gonna see another doctor, but it spefically said i would see the one. The doctor’s office is in the hospital that i was admitted too, jus upsets me because he seemed like he really knew what he was talkin about and now i am afraid i am gonna get a doctor thats gonna be like wow you are my first case of gbs. not the kind of neuro dr i want!
April 1, 2012 at 1:38 am
Kitze, do you have a neurologist? One neurologist should be overseeing your treatment, whether you are in a hospital or not.
April 1, 2012 at 3:50 am
I am not one to go to the ER for minor issues nor do I know your issuracne situation. At the same time you’ve already been dx’d with a major condition. If you feel something is not right or getting worse…get yourself into the ER at a major hospital. They WILL see you. It’s important for your local doctors “to keep a schedule” but they have NO idea what you have been through and are just filling in blocks on a calendar. If you feel this is not fast enough don’t sit back and wait. If you have insurance my recommendation would be to go to the ER and make sure they answer all your questions.
AnonymousApril 2, 2012 at 9:00 pm
Hey kitze20. Hope you are making progress. I understand your frustration about switching doctors. In my opinion you definitely need a neurologist and not a GP. Most GPs will not have much experience with GBS. In previous posts you mentioned a drop foot condition, has this improved? Depending on how severe your drop foot is it may be helped by using ankle foot orthotics which are a bit cumbersome but do help with walking. If you are experiencing tingling or pain in your feet you may get some relief using TED socks (support hose). If you have questions that you aren’t getting answers for don’t hesitate to ask this forum. You’ll find more GBS knowledge here than you’ll find at a neurologist convention in Hawaii.
AnonymousApril 2, 2012 at 11:01 pm
well got a bit of good news today. The cast on my hand came off(from me falling) so that was a good thing. (dellpar) as for the foot drop i go this friday to be fitted for a brace for my foot, thankfully! My hand doctor thinks it will really help with the walkiin a bit. As for the neurologist thing. i had put on here that i was lookin for a support group and a lady by the name of susan mills farrington gave me information that there is no support groups around here but she did give me a name of a doctor that has good knowledge of gbs and its jus as far as i would of been traveling to the other doctor. so I am gettin on the phone tomorrow and calling. So everyone keep your fingers crossed that they are accepting patients and can get me in soon. I will keep you all updated….Have a great evening!!!
April 3, 2012 at 12:28 am
Is the doctor a neurologist?
AnonymousApril 5, 2012 at 6:11 pm
yes its a neurologist i go on the 12 to see him. they told me to let the whole day open cuz he will see me in the morning and then probably wanna do tests in the afternoon. i have a question does anyone have or had a problem with going to the bathroom very often and when you do go you dont pee very much. i have been like this since before i went in the hospital so i dont know if its the gbs or not and my family dr dont wanna do anything incase its from the gbs. so i am concerned!
AnonymousApril 29, 2012 at 8:45 pm
Well to update everyone april 12 i was put back into the hospital because of getting weaker again. They started me on ivig treatments. was in the hospital for 4 days. I feel alot better now. go back to the doctor soon to see what kind of meds they are gonna put me on. hoping they dont do steroids the last time i was on them i had nightmares and was a very angry person. we hope everyone is doing better. have a great day!
AnonymousMay 7, 2012 at 6:48 pm
hello kitze, im sooooo sorry to here u were bak in the hospital again! i hope things continue or start to get better, ive founmd with gbs its takes some time to figure out the right combination of medicationds and regiments to controle ur symptoms…l i noticed no one comented on ur question about (washrooms) are u only having issues with urination?……. since my oncet of gbs in 2006 i have not been able to completely void my bladder and have been forced to do intermiten catheterisation ( spelling) there are test that cen be done by urology to find out if u are retaining urin…. gbs can effect ur autonomic system ad that involvs bowels and blatter…
AnonymousMay 8, 2012 at 12:56 pm
Synthia it seems when i start to have a relapse is when the urination thing is the worse. When i was last in the hospital thy gave me ivig instead of plasma prehesis. It has been a month and i am still feeling good thankfully. Went to the doctors yesterday and they are gonna do ivig treatments for the next 3 months and then see if i can go without it. they are gonna ween me off the ivig this 3 months. so hopping all goes well when they start to ween me off.
AnonymousMay 9, 2012 at 8:29 pm
Hi Kitze20 and everyone else, I am also 32 and was diagnosed with GBS in January of this year. I was told I had a mild case. I am very very fortunate that my doctor detected my case very early. I woke up one morning with my legs feeling like they were asleep and walking funny. Went to my primary care doc and he had a light bulb go off in his head so quick and his eyes went wide like he saw a ghost. He immediately sent me to the hospital where a neurologist was waiting for me and I was out of the hospital in 7 days after being given IVIG. Physical therapy has been the greatest thing ever! If anyone ever needs a friend you can reach me at firstname.lastname@example.org One day at a time!
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