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General General GBS Discussion
1

Hi I'm Andy and new to the sight.....and unfortunately new to GBS as well. Really glad that there is a site like this out for support because I'm finding that it's a condition that no one really understands unless they've been through it.

Quick back story: I'm 35 yrs old and a very active guy (was actually training for the Philly Marathon before I got a virus and strep, which is what turnI was diagnosed with GBS in mid Dec 2014 and spent 7 days in the hospital. I did lose the ability to walk at my worst, but luckily the progression stopped at my waist. I was treated with IVIG over 5 days in the hospital and responded well. I stabilized and showed really quick improvement over the next 3-4 weeks. Was walking a lot and my stride was back to normal. The tingling never got better, but that was expected.

After about a month, which brings us to the beginning of last week, I took a pretty sharp nose-dive. The tingling was worse, the pain in my back, neck, and shoulders started to come back and after a few days, my walking started to get worse. I saw my neuroligist, who wasn't overly surprised, and he explained how I was out of the acute phase and into the chronic phase. Our current plan of attack is to give me IVIG and then re-assess after a month. And continue with that, if I decline again. He said it could be 2-3 IVIG infusions or it could be a year. It could actually be many years, but because of my age, we'd probably try a more aggressive approach if I'm not responding after a year.

Obviously, the emotional aspect of all this is pretty devestating. I went from feeling like the worst was behind me, to looking at years of treatment. So I guess a few questions for the site:

1. Has anyone had a similar treatment plan and how did it go? The day after IVIG, I felt like I was dying and it's only been 3 days....I feel better, but no where near "good."

2. Does the continuous IVIG treatment get easier? Or do I still have to wait until I feel terrible, then get the treatement that makes me feel terrible, then finally get better for a few weeks (or hopefully longer).

3. Has anyone had success with anything else? Plasma exchange? Chemo (scary word, but it's been brought up as a last resort)?

4. Any other general advise? Diet? Exercise? Anything that might just make me feel slightly better!

Thanks-

Andy

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Thanks for the info you sent, I'll definitely add it to my reading list!

And I'm also on 3,600mg of Gabapentin......I also narcotic pain killers as necessary, but obviously try to avoid that as much as possible, since they bring on an entirely separate set of issues (but sometimes it's necessary).

It sounds like you had a much more severe initial GBS attack. My biggest concern is living with the CIDP like you are.....I guess, I haven't come to accept that as a potential reality (need treatments every few weeks for years). I know there's not magic bullet that's going to fix me up, but the thought of going through the IVIG treatments every month for a long period of time, makes me extremely emotional.

Again, I'm new to this, so "acceptance" is a stage that I'm definitely not at. I just want to feel better/normal again (brings me to tears just writing that). I have 3 young boys (5yr old and twins that are 3).....right now I can't keep up with them, which just leads to even more depression about the whole thing.

My mindset right now is that I'm willing to try anything to get me better.....the more I hear and read, that might not be a realistic approach, but that's where my heads at now.

Thanks again for the response and resources that I'll read

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Andy, I am 73 but my experience so far has been like yours. In sept 2013 I recieved a flu shot and by the end of November was paralyzed wit GBS from the waist down with some numbness in my fingers and hands, nothing too serious, hospital for about 10 days while they administered plasmapheresis. Then various intensive therapy for 90 days at which time I went home with a walker. My progress continued nicely until June 14, when I had a relapse, 10 more days of plasmapheris and then 10 days of therapy then halo with a walker. Today I walk with a cane when out of the house and without a cane in home. I am finally off pain mess. I was on fentynil patches and Ltrica. The former did its work, but for me, Lyrica as too expensive and ineffective. Since I’ve stopped, tingling and electric surges are greatly diminished never tried Gabapentin but have heard good things. My only words to you are these. There is no known miracle cure for GBS. The only known cures that seem to really work are time, exercise, and attitude. Do not become discouraged, remain optimistic that you will become fully healed, and exercise regularly the grow and strengthen weakened muscles and reopen nerve pathways. Finally, don’t compare where you are today with yesterday. Rather look where you were a month ago. You will be surprised at your progress.
God Bless You During Your Recovery

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Thank you for your story.Keep up positive thinking.Will be in touch again.

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Andy: I'm Pete...53...VERY active cyclist & fitness enthusiast. GBS took me down on April 1, 2014.

Honestly...there are a lot of horror stories I've read here, that have made me hesitant to return to this site. I want to ENCOURAGE YOU! You can DO this!!

I had plasmapherisis in the hospital -- and, bounced back immediately. But, relapsed JUST like you, a month later. Then, I had 5 IVIG treatments. Was GREAT until September...but, dipped again...and, needed 5 more IVIG. Since then, it has been a steady, but SLOW improvement! I'm working, walking, driving, doing almost everything...except running & cycling. I DO still get some fatigue in the afternoon, however.

I've spoken, personally, with 4 people who've had this...and ALL have indicated, it takes about a year (at least) to get everything back. I still have persistent numbness and tingling from the arch of my foot, to the toes....and "some" in my fingertips. But, it's NOT debilitating. I haven't taken a single gram of medication, of any kind!

Your case sounds VERY MUCH like mine...so, I'm confident you will get better. It takes TIME and PATIENCE. Pace yourself....eat well...reduce your stress...and GET the IVIG when you need it! It really helps!!

BEST of luck to you!! You'll be fine, Andy!!! We can DO THIS together, OK??



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Andy.
I went through the same thing. After I was released from the ICU I went home & worked on my physical therapy. About 2 months after my diagnosis I felt confident in my recovery. I was walking better, the pain wasn’t as severe… The numbness and tingling was still there , but I thought the worst was over.
Well, I was wrong. About a week after I delivered my daughter my walking got worse. I could barely stand up, I had zero capability of holding my balance. The pain returned. I got depressed thinking will this ever end?
Your absolutely right! It is hard thinking you have made it through the worst and then nose dive backwards.
The BEST advice I can give you is Stay POSITIVE ! You WILL get better! Don’t count the days or look at how long its been, because GBS is On its own time. You will heal faster with a positive mind set. Stay active & work on rebuilding your depleted muscle tone. Slowly you will start seeing your body return to you. You will get stronger. You will walk normal, your balance will come back & the numbness eventually goes away… And you will be stronger then ever!
Good Luck!

Just for record It took 9 months for me to be 100%
The immunoglobulin helped stabilize my GBS… Where it didnt continue to peak, but It doesn’t cure it. Time is the Only cure in my opinion .

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Andy,

I am so verysorry thata this chasm has broken your life in half. I understand completely. At 41 I wasa highly succesfulcompoer and conductor and at 42 I was in a coma for nine weeks, paralyzed- butstill able to FEEL- for many months and then slow, arduous rehab. After eight months I went home (to a new home as my wife of 23 years ended our marriage during the coma) and I beganan arduous and strict outpatient PT and OT therapy. Literally five days a week. Excessive IVG won't do any good once the virus has destroyed all of the myelin sheath. It takes, so I'm told, about two years for the myelin sheath to rejuvenate.

The most important thing I've learned from the many books I've read, doctors with whom I've spoken and patients with whom I interviewed (I intended to write a book, but fatigue- my greatest enemy- has caused me to put it aside for now, though the research is done- is that in physical therapy the concept of "No pain no gain" is actually DETRIMENTAL to patients recovering from GBS. I was placed on an exercise bike and timed, increasing the difficulty. Pain increased, ambulation decreased, fatigue grew unmanageable. I lay on my back and pressed many pounds of weight from bent knees to full extension. Each and every one of thesed pressed, exerted steps of physical therapy caused permanent axon damage and destroyed unprotected muscle tissue. For GBS, gentle, easy and slow exercise is what will help. Rest every five minutes, every two if you need. GBS is so rare that most physical therapists try to push and it destroys the body. I had IVG twice and was at Spaulding Rehabulitation Hiospital in Boston with an edert. I was his twenty-fifth case of GBS and got a cake on my last day. Dr. KEvin O'

Conner. Sadly, the physical therapy thing at the outpatient facility did not research, and I doncede that there's damned little research, but I found it so it's out there, and she pushed and pushed and today I aam completely disabled, In constant pain and plagued with horrid fatigue. I've not played piano in over three years, I attempted to work for five years, directed three musicals, taught one semester, tqught privately, accepted commissions but each time I learned that I ws not able to withstand the work due to the fatigue. Conducting a festivak involves arriving in a city on a Wednesday, spending 8-10 hoursw a day in rehearsal and performing on Saturday night. After one 8 hour rehearsal I was unable to get out of bed, both emotionally and physically,,

Then I found a book written by an MD regarding GBS and CIDP in which she wrote extensively about how gentle and careful AND PERSONALIZED physical therapy must be. Andy, the key is in tewo things: gentled and careful use of kmuscles and balance and ambulation basred on what your body is telling you, and accepting the fact that a second act is occurring in your life and in most cases, it is the second act that provides the satisfaction to the story and audience. (Forgive me, I write theatre.) You can do miraculousl things, but now you must learn how to live with a body that will indeed fluctuate from day to day; ayt times it will betray you; at times it will allow you. Cling to the things you love;' the things for which you have passion. Make sure that your caregiver, partner, whomever, has the support he or she needs because this is a opulation sadly overlooked.

If you can't run a marathon then you can help younger kids to train for a marathon. There is so much you have to offer. Now that I am no longer a musician , conductor and performer I write. Still music, but ;prose. I write essays, fiction, op-ed, book reviews. I have continued reading about the world. I;'m approaching my tenth anniversary and yes, s\at times I sob and cry out how unfair it is. But then I think how I never asked "why" when the good things happened, why should I ask when the bad things happen?

My opinion is enough with the IVG. I was paralyzed from the nose down for many, many months, on life support and had TWO doses of IVG, but in the end it is your body's miraculous mystery that will replace your myelin sheath.,. trust nature; it's far more advanced than we. Be Gentle and be patient. Ask for help and move at the pace of self guidance.

If I can help you in ANY way, I am glad to.

God speed, Andy. It's hard, but not impossible.

Dave Seaman

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Andy, my daughter had GBS 7 months ago. Here is what works incredibly well for her: get enough hours of sleep, eat well and keep positive (by doing things that you like to do). Relapses can happen, things can go up and down for a while and we have to know that this is just part of the trick. She had a relapse at about one month after the initial diagnosis. It happened to be on a day that she decided to have a few friends over and got overly tired. We made a note of that, and sure enough, for these past months, only if she gets overly tired things can start coming back. But thankfully, each month that goes by, this happens less and less. I do green juices at least once a day, with fresh veggies. When she is resting well and having her juices, her recovery only speeds up. The issues seem to happen when she hasn't been eating well, or when she got too tired. She is going to school full time and leading a normal life, full of expectations to meet. She still can't do sleepovers or crazy camping trips, but she is doing great overall. As I researched GBS, I saw that it takes about a year to get well. Just take this as a year to baby your body and don't feel guilty about it. You will win this roller coaster over, but do eat and rest well! :) Best of luck to you!

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Thanks for everyone that replied and/or offered support! I'm definitely on information overload right now and still trying to manage my day-to-day life, so I apologize if I didn't get a chance to respond directly to all of you.

I appreciate all of the personal stories and hope to hear more!!

Andy

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Hi again,

By now you've seen that each story is very different which means that yours will be as well. President Franklin Roosevelt was a survivor of GBS (they thought Polio at the time) I met a man who moved around normally and even danced on Broadway..Many died, Joseph Heller continued to write. So as.you collect data remember that anything is possible.

Dave

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I had the Plasmapheresis treatment. I believe that it had an immediate impact. I did catch it early, I went in because I thought I was having blood pressure issues and found out their that I could not do one range of motion with my left hand. Before treatment, I was close to being put on a breathing device.

The bad is that you need a port put into an artery. They come in through the neck or in the artery in the thigh. There is discomfort but well worth the treatment. There is some nausea and feeling of passing out that I had from time to time. I did have some problem with the port.

I did not have any further IVG treatments after leaving the hospital.

I am not sure if they do this treatment on an outpatient therapy.

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Hi Andy,

I am 7 months out from my initial attack which occurred a couple weeks after I received a Tetanus shot. I am so sorry that you are having so much trouble. My case was not as severe as what you are describing, but I did backslide quite a bit during that 4 month period. I had run several marathons before this and had just finished a 10K right before this happened so it was mentally tough to lose the thing I loved so much. My goal was to qualify to run the Boston Marathon. I was running 6 miles a day at least 5 days a week. Oh, and I'm 49.

Well, the good news is that I am able to run again. No where near as fast, yet, but I never thought I would be able to run. I ran my first 5K at 6 months out-not too fast but I finished. The thing that made the biggest difference for me was the Physical Therapist that I was directed to. She had worked with another GBS patient previously and knew what had helped. My therapy was not aggressive and was aimed more at stretching to keep me out of a pain cycle and strengthening my core again through activities such as easy "pool walking" in cool water and small core movements (rocking side to side and back and forth) with a large yoga ball. I never would have believed the difference this could make.

Good luck to you and getting back on track! Never give up!!