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AnonymousFebruary 25, 2011 at 11:58 am
I was diagnosed the GBS on 12/28/10 and spent 1 week in the hospital. After that I spent 4 weeks at a rehab facility. I am currently attending physical therapy 3 times per week. I am currently able to walk without a walker but I feel uncomfortable using a cane. I would like to go back to work but I am not sure if I am ready. I was never put on a ventilator but when I left the hospital I could only move my right arm.
AnonymousFebruary 25, 2011 at 12:39 pm
Welcome to the forums. 🙂
You state you’re able to walk without a walker but feel uncomfortable using a cane. Does the cane make you feel off balanced? I found using a walker difficult as it caused balance issues when lifting and placing it back down. My therapist suggested four prong (quad) canes until I was comfortable enough using a regular cane.
Has your doctor released you to return to work?
Now, I hope this isn’t a stupid question, but are you ready to go back to work or are you returning for financial reasons? If it’s for financial reasons, can you work part time and gradually increase your hours? Is physical therapy ongoing and will this affect your work schedule?
Sorry for all the questions. 😮
AnonymousFebruary 25, 2011 at 1:32 pm
The cane felt awkward but I think that I would be safer using it. I need to return to work partially for financial reasons and partially because I am bored. My job is very flexible and I can work both at my office and from home. I will be able to continue with my physical therapy. I am going to therapy today and will try the cane again.
AnonymousFebruary 25, 2011 at 1:34 pm
First of all welcome to the site you will find lots of people willing to discuss and will receive a great number of different opinion on any subject. It sound as if you are doing great. I went back to work 2.5 months after getting our of the hospital starting at two hours perday and moving to full time in about 6 months. However, I know I went back to soon. I could not handle full time employment and i am currently out of work on short term disability. i am 61 and do not know if I will return to work. No one including your doctor’s will be able to tell you when you are ready. I would suggest practice work where you do at home the same types of things you would do at work and see how it goes. I am now at about 13 months out of the hospital and still require two long rest periods to get through the day. But I know of others that have returned to full time with no problems. good luck and keep us posted.
February 26, 2011 at 10:45 am
Good to see you found this site.
I was dx’d in early Oct 2010 used a walker for about 2 months (outside the home). I had a very similar experience with a cane…I just could never get the hang of it. Tried a couple of times, but could not get it to work fo me where I felt comfortable. In early January I got to a point where I could get up from the floor without holding on to something. Once I was able to do that I felt a lot more confident being out and about. Prior to that point I think a cane would have been benifical.
AnonymousFebruary 26, 2011 at 12:11 pm
I tried the cane again yesterday at therapy and pretty much got the hand of it so I went and bought one. I have spent the last week weening myself off of Neurontin. I have experienced some withdrawal effects that are just starting to get better. Has anyone else had any bad effects while taking or going off of Neurontin?
AnonymousFebruary 26, 2011 at 2:06 pm
If you notice your pain increases you may have to go back on the Neurontin.
Everyone is different, I tried to go off of it and I was in too much pain but I have CIDP not GBS.
Good luck to you, I am glad you have had a quick recovery.
Keep an eye on yourself it is easy to overdo it! 😉
AnonymousFebruary 26, 2011 at 4:21 pm
Welcome to the site.
I know you rather not to use a cane. It feels a little awkward and people look at you condescendingly. I have to use a cane for balance. I purchased a nautral root cane online. It very sturdy and looks like a war club, but it’s very light. People acutaly complement on the cane and want to know if I made it myself. You might think about doing a internet search. The price should be around $45 unless you want some fance carving.
AnonymousFebruary 26, 2011 at 9:02 pm
About HOW to use your cane?
I’d found out a lot by asking? And, it’s saved me from falling many many times over! Also got a measurement of the cane’s PROPER height to my hand? And about 1 to 1-1/2″ were cut off the bottom! It became soo much more comfortable and easy to use after that one lesson using only 15 minutes +/- of my therapy time? Well worth it!
They wanted me to try the quad cane? I kept tripping over it? Not good, If necessary I’ve found I can use one cane in each hand far better and safer! We are each different? Good luck!
AnonymousFebruary 27, 2011 at 10:57 am
[QUOTE]homeagain: About HOW to use your cane?[/QUOTE]
I’m sorry, but I though you had already done that. This is one the most important parts of using a cane. The correct hight makes all the difference in the world. At my hight, I could only find the proper hight on line. So please take Homeagain’s advice about talking to your physical therapist about the proper hight and use of a cane if you haven’t already done so.
AnonymousFebruary 27, 2011 at 11:59 am
Thanks for your replies. I worked with my therapist last Friday for about 30 minutes and was able to get the hang of the cane. I have been using it since then. I like it alot better than the walker. I live about 3 miles from the beach and was hoping to go for a walk at the beach today but I have come down with a cold.
AnonymousFebruary 27, 2011 at 9:58 pm
It’s all those little extra ‘things’ they never tell you about in the hospital..
I’d rather use two canes than a walker any day IF I CAN? Why? It’s easier to get around and thru doors and such!
When sitting waiting in a doc’s offices? Far less for others to trip over too!
Oh, dear! Where IS my forklift? I soo want it now!
Good things to come for sure!
AnonymousMarch 7, 2011 at 7:10 pm
I went to the doctor today and was released to return to work next Monday. I am currently walking about 1 hour per day with out a cane. I am still using AFOs. I do not have any balance problems but my ankles are still weak. Overall my condition continues to improve.
March 8, 2011 at 12:21 pm
good news Mike….I hope your employer will accommodate you if you need it….so cool AND scary that you are returning so soon, I wish you the best in your speedy recovery:)
March 8, 2011 at 9:46 pm
I am curious, how quickly were you diagnosed? What treatment did you receive? Was the treatment effective?
AnonymousMarch 9, 2011 at 11:11 am
Regarding my diagnosis. On 12/28/10 I woke up feeling weak and went to the hospital. They ran some tests and sent me home. I continued to get worse throughout the day and the next morning when I got out of bed I collapsed on the floor. I went back to the hospital and they diagnosed GBS. I started IVIG on the same day and received 5 doses. While in the hospital I continued to get worse for the first few days. I was never on a ventilator. I was transferred to a rehab hospital after 1 week and at that time I was only able to move my right arm. I was in the rehab hospital receiving PT 3 hours per day and after 4 1/2 weeks released and able to walk with a walker. Since leaving the hospital I have gone from a walker to a cane to walking unassisted. I am still very weak overall but all of my muscles are working. I was very active prior to GBS sometimes surfing 5 to 6 times per week. I think that my overall prior conditioning has helped me to recover at a quick pace. That and the fact that all of my friends have been praying for me. I hope this helps.
March 9, 2011 at 11:20 am
Thanks for the info. My husbands gbs came on slower so the diagnosis wasn’t until about 2 1/2 weeks after he felt the weakness. He was hardly walking when he got diagnosed. IVIG didn’t touch it. 10 days after IVIG they started plasma exchange. He has had 3 rounds. He is being released to a nursing home this morning. Luckily I now see improvement for the first time in a month.
He also was very active, skiing every week and very fit. Hopefully, like you, he recovers quickly.
March 10, 2011 at 8:43 pm
Great to hear you are getting back to work so soon. Take it slow and don’t forget it takes time to build up those weakend muscles. Continue to make your recovery a priority.
I’ve been back at it for about a month (4months off) and I am still ramping up to a full 40 hr week but making progress. Hardest thing for me is getting up in the morning seems like i need 10+ hrs or I am a zombie.
Congratulations on your speedy recovery!!
AnonymousMarch 28, 2011 at 3:30 pm
Today is my 3 month GBS anniversary so I thought that I would post an update. I went back to work 2 weeks ago and so far things are going OK. I still have some overall weakness especially in my hands. I am walking without my AFOs and no cane. Most of the time I wear a brace around my ankles that lift the toes but I am not able to wear them in my dress shoes. I have some pain and tingling in my feet but usually not bad I have a workout routine that I do every morning that includes some stretching, abdominal work and band work that takes about 40 minutes. I go to the gym 3 times per week and do an overall body workout. I have to be very careful to make sure that I do not pull or strain anything. I also ride my spin bike about 4 times per week. I feel really bad for some of the people that have had such a rough time with GBS. I have been one of the lucky ones. I would not have believed that 3 months ago. I am still not able to do most of the things that I enjoy most in life such as surfing, kayak fishing and mountain biking. When I was in the rehab hospital my biggest goal was to return to work so I feel blessed that I was able to return in less than 3 months. I have a 19 year old son who is joining the Marines in May and I hope to do some fishing with him before he leaves. If the water ever warms up at the beach I will most like take my surfboard out and at least paddle around. My hands are too weak to put on a full wetsuit right now. I look at the post on this site every few days and I am always glad to hear when someone is doing better.
March 30, 2011 at 1:30 pm
[QUOTE=MVC] I feel really bad for some of the people that have had such a rough time with GBS. I have been one of the lucky ones. I would not have believed that 3 months ago. I am still not able to do most of the things that I enjoy most in life such as surfing, kayak fishing and mountain biking. When I was in the rehab hospital my biggest goal was to return to work so I feel blessed that I was able to return in less than 3 months. I have a 19 year old son who is joining the Marines in May and I hope to do some fishing with him before he leaves. If the water ever warms up at the beach I will most like take my surfboard out and at least paddle around. My hands are too weak to put on a full wetsuit right now. I look at the post on this site every few days and I am always glad to hear when someone is doing better.[/QUOTE]
Hey Mike, you’re a trooper! I’m just starting the process where I go back to work. It’s been a hard decision, mainly because I think that conditioning and stretching has been so important to my recovery. With family and obligations I fear burning out. But I also feel strongly that getting out and going for the challenge will move me forward.
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AnonymousJanuary 28, 2009 at 7:35 pm
I got GBS in March 08 and would like to know how long symptons last? I am a 40 year old female with 2 kids. I was paralyzed from head to toe and have some issues with my left leg, back and headaches (migraines), as well as some facial problems. I am on gabapentin, citalopram and nortriptylin. I havent been able to go back to work yet (looking) not confident enough with the facial problems (cant smile). So, I am just looking for some input on how long it can last and any other input to help me along.
AnonymousJanuary 28, 2009 at 10:41 pm
Welcome to this site and thanks for asking your questions. Unfortunately, it is really hard to say how long symptoms will last because each person is different in healing and in severity and range of symptoms. A lot of neurology textbooks tend to say something like that you will have most, if not all of your healing from GBS within 18 months after onset. Real life is that there are a lot of people still making progress and getting better 2-5 years after it, so that this is what the more informed doctors are saying. We tell each other that GBS stands for Getting Better Slowly. Reality is that time will not be exactly the same for any of us again. I have learned lots and lots about patience and perserverance and living in this moment from this illness. I did not ever think I NEEDED to learn this, but I guess I did. The best estimate for “recovery” is the slope of your own curve. If you are still slowly noting recovery steps happening, then you have not plateau’ed and can expect approximately the same progress in the same amount of time as previous. Regarding not being able to smile, there are some people that do not recover some things that previously they could do. I do not say this to be discouraging, but to say that it is worth it NOW to start working on showing a “smile” in other ways–with words or voice or gestures. There are many other ways to convey “happy to see you” to others including just saying it. Please know that we all here wishing you on on your journey.
WithHope for a cure of these diseases.
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AnonymousJune 12, 2008 at 10:14 am
I joined this site a couple of days ago. I learned of it from the GBS/CIDP News Letter I’ve received over trhe years. I have been living with residual weakness as I call it since 2000. I am curious if anyone has or can remember ever being exposed to Black Mold anytime prior to their contracting GBS.
I was exposed to this type of mold while visiting my mother in the suburbs of Chicago in 1999 and by Feb. 2000 became afflicted with GBS.
AnonymousJune 12, 2008 at 11:40 am
Hi & welcome.
My daughter has CIDP, dx’d at 4 (6 now) & was exposed to mold in our apartment for years before we knew it was there. I’ve done quite a bit of research on this subject.
Was the mold ever tested? Some molds are black in color but aren’t the “black mold” that’s all over the news. We had our apartment tested & it had cladasporium & aspergillus. Both are considered to be allergenic molds. Both had a black color to them.
I read a study that said that mold exposure can cause demyelination.
My theory is that the exposure to an allergen sends your immune system into overdrive, making it go haywire & then it starts to attack the nerves.
AnonymousJune 12, 2008 at 12:21 pm
Kelly and Darodg,
I tell everyone that I have a chemical allergy The smell of most scented cleaners, perfumes, colognes, fabric softeners, laundry soaps and even shampoos, bath soaps and lotions all bother me intensly.
I know most people think it is in my head and it is another one of those issues that is not well known. I don’t mention it to Drs. anymore because of the reactions I have had in the past.
I have wondered if this also had a part in my immune system attacking my nerves. I have had it since 1974.
June 12, 2008 at 6:55 pm
Kevin is sensitive to taste and smell. I have even had to get rid of certain clothing articles that have decals. I guess they are treated with formaldahyde.
AnonymousJune 12, 2008 at 8:50 pm
Might I ask you and any others with chemical or sensitivity to smell this question – do you get ice cream headaches or brain freeze when you eat or drink something cold? I found that people with overloaded systems get this. I did not get brain freeze until I overloaded my system with fish liver oil. SInce it is fat soluable, it took a few weeks to totally leave my system. I also could not read more than a paragraph – my brain would shut off. This was tough since I am an avid reader. So when I taught middle school, I would ask my students if they ever get brain freeze. There was a high correlation between students with reading disabilities and brain freeze. My theory is that many students having difficulties in school are simply highly allergic with overloaded systems. So I think if you have chemical/smell sensitivites, it would be good to see what you are doing to create this overload. Food or environment plays a big part. GBS is the Supreme Overload.
AnonymousJune 12, 2008 at 9:35 pm
I lived in Texas in the early to mid 70s. The city had what we called smoke trucks that went around city streets several times a week releasing chemicals to control water bugs and other insects. I have always believed I got a chemical overload from this spray. Prior to this, I was able to use anything with scents and believe it was this environment that caused my problems with scents.
Yes, I do get ice cream headaches if I eat ice cream to fast, haven’t done that in years.
I feel for your sister as I know what it is like for her and others that have problems with scents.
Thank you, the fact that you know it is a real issue for people means a lot.
AnonymousJune 13, 2008 at 5:15 am
I’ve been hypersensitive to chemicals my entire life – but my sense of smell and taste has been totally off since being sick. I frequently smell things my husband doesn’t smell, or smells are very strong to me. Sometimes I have no sense of taste, other times things just taste horrible to me.
I’ve always suspected my hypersensitivity was due to growing up in a town that had a huge chemical plant, a paper plant, and a glass plant none of whom cared much about what they put in the air until the late 1970s. Everytime we would leave town for awhile and come back the smell would be overwhelming… and then you’d get used to it and not smell it anymore.
Oh and yes, I get brain freeze too – that’s an interesting theory about the brain freeze being related to reading disabilities and chemical sensitivity. I’ve never had any problems reading, it’s always been a strong point until now, however about half my problems reading come from the fact that I just can’t focus my eyes for that long, the other half comes from the fact that I just can’t focus my brain for that long. You know you can get rid of the brain freeze pretty quickly by putting your tongue on the roof of your mouth where the nerve bundle is. Your tongue has more blood vessels so warms up quicker than the roof of your mouth. 😀
Happy Friday ya’ll
AnonymousJune 13, 2008 at 11:15 am
This is an interesting thread and something I have been thinking about for some time. I, too, was esposed to black mold but don’t know if it was the bad type. As to chemical intolerance, I have had problems my whole life. I am a firm believer that some of us have impaired auto-immune systems and so were much more susceptilbe to GBS (an auto-imune disorder!).
When I look back, I had eczema as a baby and it continued well into my teen years. Then it abated and I began with allergies, first to smoke and then to dust. Those went away and I developed a severe allergy to cats that lasted 3-4 years. That went away and I developed allergies to perfume, soaps, and other good smelly things. It also went away. Then I got GBS! Following GBS, I was hit with chronic hives but they responded differently than normal. I would get hives if I went out in the cold and they would go away if I climbed in a tub of hot water. Opposite of what they should have done. The next thing was a severe and critical reaction to non-steroidal anti-inflammatories…to the point of being life-threatening. I am now struggling with suspected arthritis and think there may be something going on deeper than just arthritis (CFS, PMR, etc). In between all this, the eczema would come and go but never as severe as when I was growing up.
The doctor I saw when I had chronic hives suggested that I have an auto-immune disorder that causes my body to react to things in my environment in a way that the average person would not. Truly is food for thought…..and all of the issues I have experienced are attributable to the auto-immune system malfunctioning….
AnonymousJune 13, 2008 at 11:19 am
You hit the nail on the head. Making your eyes and brain focus. That is what happened when I was overloaded with fish liver oil. I would read a paragraph and my brain would say, “That’s enough.” I could not make it concentrate anymore than that. My theory seems to be holding up. Thanks
AnonymousJune 13, 2008 at 7:54 pm
Janet, Julie, Shirley, Darodg,
I think our bodies are incredible in keeping us healthy, but sometimes we just tax it without realizing it. When I work with getting friends better, I start with seeing what they are putting into their body. I get them eating according to their blood type. This usually alleviates many of their problems. OUr body gives us so many signs that something is wrong and we ignore it or take pills to stop it. We have been taught to do this by our doctors. Forget about what is causing the symptoms – how stupid. Fish liver oil is supposed to be healthy – but it slowly built up in my system because it is fat soluable. If I eat potatoes, corn, wheat, peanuts, I am taxing my system. WHy? Because I am an O blood type. If I were to add an environmental toxin like mold or living near a chemical plant, that might push me over the top. But if we do our best in watching what we eat and do, I think we can withstand these environmental problems.
WHen I work with people, I ask them what foods they crave – this gives me a clue. Bread? A possible yeast infection. Chocolate? A magnesium deficiency. ( We all love chocolate, but some people are addicted.)
Look at how many people accept Brain Freeze as normal. We accept too much. But that is because doctors don’t tell us that it is not normal. They don’t consider it bad. If we do not accept the little things, then we won’t overload our system. Arthritis is fixable. It is usually due to eating the wrong foods – usually potatoes, tomatoes, and other members of the nightshade family of foods.
I would advise that people with sensitivities to check out the foods they are eating as far as their blood type goes. When I meet people with cancer, they are usually blood type A. This does not mean you will get it, but it means you should watch your diet and stress and be more aware.
AnonymousJune 14, 2008 at 7:18 pm
After reading all of yourt replys to the mold question, I realized we are all very informed. My symptoms are as varied as everyone elses. I have been taking nuerontin at 1600Mg daily for the past eight years and actually believe it is the cause of my CIDP. Especially after reading the side effects. However, it does helpmwitht the burning pain in my hands. I take 10/325 Mg of Vicodin twice daily for the joint and muscle pain as well. But after taking these meds for so long my body just built up a tolerance which puts me in a vicious carrot chasing syndrome. After using 5/500 vicodin I went to 7.5/7500 and now 10/325. I feared problems with my liver because of the tylenol in ths drug and have slowly weaned my self to a lower frequency of usage in both Vicodin and Neurontin. As much as both of these drugs helped, as far as I’m concerned they both kept me fatigued.
I now am Hyotherasic and am being treated for this latest and greatest sympton.
I found it interesting to hear that ones food intake could have an affect on your symptoms in regards to your blood type.
I too have had a very sensitive sense of smell, and still do. I am exstremely sensitive to flowery perfumes to a point that it takes my breath away.
Then, there’s the dry eye thingee. Oh boy. And speaking of eyes. Did anyone go cross-eyed? I sure did, but was able to have a corrective prism in my left lens.
So I laugh, I cry.
And wonder what’s next.
I hear someone call
But can’t turn my neck.
I used to run and jump and play all day.
But now when I walk I list and I sway.
But my humor sustains me and helps me focus
I wish I could be better with the magicians Hocus-Pocus.
AnonymousJune 14, 2008 at 11:29 pm
I never noticed any allergy-like symptoms growing up, and then about 1 1/2 years ago, i started to have what other people called, “allergy eyes”. Docs tested me for eye diseases, but my eyes are fine. He never mentioned allergies, and id never experienced them (knowingly), so it is something i never considered.
Around the same time, i noticed that certain smells bothered me. That has continuously gotten more severe, to the point that it is really a problem. There a very few smells that don’t bother me, and many that send me to my knees. Assumed i was developing allergies, and lots of them.
This winter, my 7 year-old was sick everyday with severe headaches and abdominal pain. After multiple trips to the doc, they set him up for an allergy test. He has multiple “significant” allergies to both environmental allergens and foods (milk products, chocolate, and gums). Doc says he inherited them. Imagine i’ll get tested after the baby comes.
I’ve been wondering all this time if these allergies (that i assume i have), have had anything to do with my suspected GBS. What a coincidence that they came shortly before my illness. Anyone else get tested for allergies?
AnonymousJune 15, 2008 at 10:06 pm
I have been tested for allergies, Jamie, and they came out positive so had to have injections for awhile but not sure they did me any good as the allergies just shifted around until I was allergic to other things than before. I do bruise really easy, Carolyn, and often don’t know how or where the bruise came from.
AnonymousJune 15, 2008 at 10:34 pm
I had hayfever that would start a week before my birthday in August. I was miserable by the time my birthday arrived. I decided to try vitamin C. I took one an hour and watched to see how many I needed before the allergies would stop. Once I got an idea, I took 2 capsules every other hour and it worked. I only had allergies if I was not taking enough of vitamin C. I spent the last 22 years living in Florida where the ragweed grows several feet high. I had no problems since I took C. Now I take 3 capsules 4 times a day. When I am lacking in vitamin C, I bruise by just cutting a piece of paper with a small scissors. I am guessing that you could stop some or all of your allergies and sensitivities if your immune system/ white blood cells had enough of C. It fights inflammation. If you decide to try this, do not take tablets – they eat away at your stomach lining. If you take too many, the worst that can happen is that you will go to the bathroom – #2. That tells you that your body has enough. That is alot better than pharmaceuticals and their side effects.
AnonymousJune 16, 2008 at 10:40 pm
I can up the Vit C. I used to take it regularly but then quit. I do take lots of other supplements though as I hate taking drugs if I can avoid it. I am on Magnesium, Glucosamine with Chondroitin, MSM, Vitamin B complex, L-Lysine, and a healthy dose of Vitamin D. Won’t hurt to add in C. Thanks for the input.
AnonymousJune 17, 2008 at 4:13 pm
If there is one supplement that is absolutely necessary, it is vitamin C. If you have any allergies, then you are not taking ENOUGH. Linus Pauling, who is the only one person win TWO Nobel Prizes, wrote the book about vitamin C. He said that a goat the size of an average male, makes around 5-7 grams of C a day. If you have allergies, I would guess that you need at least this amount. As I said, I take 12 grams a day – 12,000 mg a day. I had my parents of around 6 grams a day for years. If they had a cold, they took more. A person with allergies should take a one gram capsule every hour until they reach bowel intolerance, then stop. This will tell you how much your body needs. It will not harm other supplements. I would not take it if you are on Coumadin/blood thinner. When you see how simple this is, you will be pleasantly surprised and feel in control of your health. My theory is that the more sugars and starches you eat, the more vitamin C you willl need.
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