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Living with Polyneuropathy CIDP, GBS, & CMT

New Member with GBS

Hello everyone. This is my first post so I hope I am doing this correctly. I have been looking at the site for a while and reading other people’s stories. It certainly makes me think two things: I’m sorry that others have to go through what they are going through and that I am not alone.
My story…I had a Campylobacter infection in late August 2016. I likely got it from work (I work with animals). I was in the hospital 5 days. I went home for three days and felt great. On the fourth day I got up in the morning and my legs felt weak. By that evening I could not stand up from a chair. I went to the ER. They didn’t really know what was happening. Blood work and lower back MRI didn’t show anything. They admitted me and started more testing. By 8 pm the next night they had diagnosed me with GBS. I was transported to a specialty hospital via ambulance 50 miles away. I stayed there for 2 weeks receiving five plasmaphoresis treatments. From there I was transferred to a rehabilitation hospital. I lived there 5 weeks so I could learn to stand and then walk (with a walker) again. I went home and had 6 weeks of home health care therapy and then outpatient therapy from December 2016 to April 2017.
I am continuing to improve but it is VERY slow. I work from a wheelchair since I have a very demanding busy job and I still walk with a walker. I can walk very short distances with no aid device, but my ankles (stabilizing muscles) and toes are still weak so my balance is not good. My stamina is also bad, my legs start to shake. I am very scared that I may fall. It would be horrible to break an arm too. I cannot complain at all about the support I have received. I have great friends, family, clients from work, doctors, nurses, medical support staff and therapists. My biggest issue is frustration and probably being too hard on myself. I had a couple of therapists put a timeline on me that I should be 100% by a year and here I am coming up on that year and I am no way near normal. My neurologist (my favorite of MANY docs) told me to make very small short goals and don’t put that pressure on myself. Not being able to do what I used to be able to do makes me so sad and I feel like a failure. I am a very independent person and have had to rely on others for things. This is extremely tough for me. I assume others have or do feel this same way? Thank you in advance for any words of wisdom you may have.

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hey k9doc,

First, I am very sorry that you, myself and everyone else inflicted with this “syndrome” has to experience this. Everything that you are experiencing is something that we have all gone through. In my opinion what you are experiencing is completely normal. I believe that the physical therapists that stated you would be 100% better within a year were just trying to give you hope at that point in your recovery. No two people are the same in their recovery and a timeline can not be predicted by anyone. Sometimes the long term emotional toll it takes on the patient and their families is worse than the original illness. In my particular case the symptoms began all at once. In November of 2015 I woke up and had a difficult time getting out of bed. 4 hours later I was in a hospital completely paralyzed from the neck down. I had a trach put in as both of my lungs were paralyzed and I was put on life support. All my family members were called as I was not expected to live through the next night. I actually died for 16 minutes the first time and 12 minutes the next. Apparently my will to survive and excellent medical care turned it all around. I was on the trach for 3 months as I still could not breath on my own. I was hospitalized from November 2015 until may 2016 before being released to outpatient rehabilitation. My point in making this long drawn out reply is that I know a lot of people don’t survive and many had it worse than myself. I feel extremely grateful and thankful to a lot of people. I was in a wheel chair and then graduated finally to a walker and the about a year later to a cane. I felt as if I was a burden to my loved ones. Friends disappeared because the illness is all I could talk about. I thought that I would never fully walk again and would be this way the rest of my life. I honestly believed that I would have been better off not making it. I quickly realized that I could sit around and feel sorry for myself or I could take control of my situation. I took control of my rehabilitation long after it medically ended. I am coming up on my second year of recovery and I now walk unassisted in any way. I am once again completely self reliant as I now drive again and take my dog for walks daily. I now counsel people in my city who have gone through gbs, cidp and other terrible diseases and syndromes. Everyone of us all have experienced depression, being a burden, lack of hope and often times terrible thoughts. My advice is to learn as much about gbs as possible, become active on this and other support sites and take control of your recovery. I believe that you will one day walk again and look back and say “I am not a victim, I am a survivor”. The hardest and most emotional thing that I have ever done in my life is to get, survive and beat this ugly “disease”. Hopefully others will add their experiences, advice and any words of wisdom. I wish you well Andy

Good evening my friend I too am sorry for what you’re going through. Have they discussed CIDP with you. They thought I had GBS but confirmed with the nerve conductor study that it was chronic. It is a more aggressive treatment plan and I am on my second year doing well but there are days like you become very lonely and difficult. I just want to make sure that you’re being treated for the right condition a lot of people don’t know about CIDP it’s the chronic version of GBS. I am surprised that you were working they put me on disability right away. If you ever want to discuss this feel free to call 607-■■■■■■■■ my name is Jutty DeLaney. Best of luck with care and supports God bless you and your family

It seems odd to say, “Welcome”, when such an awful disease is what brought you - like all of us - to this most excellent site. I’m sorry you are going through through all that you have and are going through.

I so related to your comment about being sad. I can relate. I’m 6 moths in to a CIDP diagnosis- with a thousand twists and turns - and have, by God’s grace and lots! of people praying for me, gotten through w/o sadness … until today. Another set-back was the cause, and it just overwhelmed my soul.

I’ll be praying that you strengthen physically that sadness will disappear.

Mary Ann,

Andy,

Thank you so much for your response. I am so sorry you had such a bad case. That sounds awful but I am thrilled to hear you are doing so well now. What an inspiration you are to me!!! I certainly do not want to come across as complaining because I know I could have it a lot worse. I agree that the therapists were likely just trying to give me hope. I am a very organized, goal-oriented person so when they said that I felt like that was what was going to happen and I was going to make it so. Of course, as you know, you cannot make your body do what it doesn’t want to do yet. I just get very impatient and frustrated. Most of the time I feel like a “survivor” but occasionally I feel like a “victim”. I have had a small set back. I had to have abdominal surgery a month ago (not related to the GBS) and am on exercise/lifting restriction for another two weeks. After that I plan on hitting the swimming pool hard because that seemed to really help. Not afraid to fall there! I want to find a local support group but cannot find anything. I plan to keep looking though and will ask at my neurologist too. Again, thank you so much for your advise and sharing your story with me. I hope to keep in touch.

Jutty,

Thank you so much for your reply. So sorry to hear your issues are more chronic. I will certainly ask my neurologist about the CIDP. My understanding is that my EMG showed the issue was actually the nerves themselves and the myelin was fine. They plan on doing another one soon. My last EMG was a year ago. The reason I am back to work is because I am a solo practicing veterinarian and I own my own clinic. I don’t really have a choice but I think it is good for me because it gets me out and makes me feel useful. I actually work faster and more efficiently than some of the relief vets that have been filling in for me and they are able to walk! Lol! I do get fatigued easy so I try not to over-do-it. Thank you again for your advise and support.

Mary Ann,

Thanks for replying to my post. You are a tough lady to have gone 6 months into this journey and gotten though until now without being sad. You are amazing!!! I’m sorry about your diagnosis and recent set-back. I can relate to that too. Even though we have a lot of wonderful support it gets difficult sometimes because we get hard on ourselves. The frustration and feeling of helplessness takes over. It happens to me more when I am alone. I try hard to keep a brave face for everyone because I don’t want them to think I am not doing well, their well wishes and help isn’t appreciated or that I am losing my mind. That is why I looked hard for a support group like this because I knew that only people that have or are going through this would understand. I hope you are feeling better today and are less sad. I too hope your sadness will disappear! Keep in touch.

k9doc

I hope this day is turning out to be a “good” day. We all know how the good and bad days go. I most certainly did not take your post as being “complaining” in any way. It is completely normal to feel that way and a healthy typical response. The abdominal surgery is definitely a setback and disheartening at the least. You must be sure to completely recover from that before getting back to the gbs recovery. Rushing into it and doing more damage would surely be detrimental to your well being both mentally and physically. I can tell you that finding a local support group for gbs is challenging. I had to actually start one after volunteering at the hospital that saved my life. I live in a large city with a lot of people so there are more inflicted. This site is probably the best online support that I have seen and been involved with. I really feel for the people that have not come across it yet or do not have the ability to do so.

I find it incredible that you became a veterinarian, opened your own clinic, contracted gbs, got in your wheel chair, went back to work and handled your business. That speaks volumes about the type of person that you are and gbs is not winning this battle. I am not sure that I would have had the ability to do that. That alone is a huge victory and should be celebrated as one. Sometimes we have a tendency to just focus on the bad and not feel good about the milestones or even recognize them. Let me tell you that you are truly an inspiration to myself and others that may be reading this. I am willing to bet when you rolled (literally) out of bed this morning, you did not realize what you have accomplished and what sharing it means to others.

When I find myself in despair, in pain and frustrated. I will log on here and try to help others and myself that are feeling the same way. Perhaps just to remind myself that I am not alone. It can be healing in ways I never knew. It sounds as though your plan of recovering from surgery, getting back in the pool and going back to the doctor is a great way to achieve the goals that you have set for yourself.

Here are some things that I have learned over the last couple of years.
1-do the research and have a list of questions for whatever doctor you are going to see. There is nothing worse (except gbs) than leaving a doctors office feeling like your questions were not answered. 2-Be careful of gaining to much weight. A lot of gbs meds and lack of mobility will pack it on quick. It is easy to gain and very hard to lose. You do not want to be 50 pounds heavier when your rehabbing starts again. 3-If you have never felt despair, loneliness, doubt, scared or defeated.Then you should probably be more worried that you have not felt them then if you did. 4-Do not allow yourself to become closed off to the outside world such as family and friends. The world does not stop because we became sick. We just go about continuing to enjoy it a lot differently. I honestly thought that I would never walk again. If a 53 year old, irish redneck from Kansas city can do it. I expect most anybody can.

Hope some of this helped you or someone reading this. Keep on, healing on.
Andy

Thanks for continuing the conversation! I agree wholeheartedly with your synopsis of having great support and still have waves of despair. The uncertainty of each new days’ challenges is my life’s biggest rollercoaster. A short while after I was diagnosed this Spring (and having survived! 3 hospitalizations and 3 surgeries in 6 wks … including the barbaric nerve and muscle biopsy!) I began a blog that I entitiled, ‘The Journey’. I shared it with all my friends, and in turn they shared it with others. I heard it was being read by many (in of all places, England!) Interestingly, I ended ‘The Journey’ a couple of weeks ago … exactly one day before I was to have IViG (on the last of the 4 wk schedule b/c I was ‘crashing’ after 3 wks and will now be on 3 wk schedule). I got the IViG … and … guess what? Unlike the prior 3 infusions that resulted in immediate positive results, this time it had exactly ZERO effect on my condition. Still (10 days later) cannot walk - only shuffle - and must use a walker. Have been told by my neurologist, ‘Do not do ANYTHING but sit and go to the bathroom as needed’ YIKES! (I LOVE doing Pilates, going on 2+ mi Prayer and Praise walks every day)
So, back to The Journey. I am a Christian. The Journey is written as a testimony to the faithfulness of God in ALL things at ALL times. It’s HIS story because I am His. I’d be happy to share The Journey with you! It’s SO encouraging in all the ups and downs and crazy twists and turns we are experiencing! I’m not sure how we can communicate outside of this site but here’s my email address if you’d like to send me your email so I can attach The Journey to an email. ■■■■■■■■■■■■■■■■■■■
I have added you to my prayer list, “Meagdog”, and I will be praying for YOU!

So very sorry to read your story. I too am a GBS survivor and would like to add my 2 cents worth. Unfortunately, even in 2017, Guillain Barre Syndrome is NOT well understood in the medical community let alone correctly diagnosed once early symptoms occur. At the start, symptoms tend to be more subtle and attributed to other diagnoses first, incorrectly I may add, then pick up speed like a steamroller and new symptoms appear daily, Things that were never an issue suddenly become one.

GBS is also, sadly, extremely poorly recognized by the “experts” ie. the Neurologists out there who may or may not ever see a patient with GBS in their practice let alone recognize what is happening as the
GBS takes hold let alone what the after effects/damage may be. While there are certain physical GBS markers they are unfortunately Not easily interpreted because presenting symptoms can also be a lot of other conditions. When it starts, it hitsa bit slow then becomes a runaway freight train as I think you can relate to. You lose function, literally by the day and may even wonder, as I did, when you go to bed a night if you will wake up the next morning. And yes, sadly, GBS can feel that scary.

While my story isn’t as severe as what you have experienced, it is safe to say aspects of being post GBS still remain for me even 9 Years down the road. When I get overtired, I trip more and my legs feel a bit weaker than normal for a while. My physical endurance level drops during these times. I had to drop out of the work force as well that was very stressful. It took a long time for me to be able to resume safely driving myself anywhere. I am a licensed professional who worked in an office environment using computer for extended periods of time. Post GBS, I couldn’t do that any more. Even now, typing on my home PC remains uncomfortable enough I can’t do so for anywhere near what my job required of me to be able to do.

I notice you emphasized the MANY docs and for that I can also sympathize with. Be thankful you weren’t told by a Neuro you had Fibromyalgia and to go find a Rheumatologist on your own to deal with it, a process I was baldly told would likely to me take at least 6 months or longer to find . And no, I don’t live in an isolated place where there are few medical options available.
Being misdiagnosed in the beginning is Typical, unfortunately.

That said, sadly, there is no “cure” for GBS. There may well be residual effects you must live with for the rest of your life. It doesn’t help even in this day and age that Medical Science just isn’t that sophisticated whereby local medical practitioners even recognize what is happening to a person once symptoms appear let alone have any clue how to best manage a patient with GBS once it begins.

Count on a long road of PT but on a more intermittent basis. Once it is safe enough for you, I encourage you to get into a warm pool for PT therapy under the careful guidance of a PT therapist who has either had GBS patients before or a lot of experience with patients that have had a significant neuro insult occur (eg.helping stroke patients trying to improve from damage done) because GBS is Damaging to the body. Plan on participating in a more long term PT rehab program that may need to be staggered (as in stopped and re-started repeatedly once over time) based on how well you can tolerate exercising damaged muscles that support the spine, your legs , arms etc.

I guarantee the PT aspect will involve doing a long term rehab program in stages versus as a 6-8 wk course won’t “fix” everything which could well mean having to find another therapist with experience caring for people who have had a major neurological insult to the body. Some community based PT therapists I encountered held to a “cookie cutter” approach to Rehab that just doesn’t work well for patients who have had GBS. I suspect, just as my GBS affected me in my 1st year, that you need to realize the PT will need to be done/repeated in stages over time as it is Not Unusual to Start-Stop a PT program as things very slowly normalize to whatever maximum functioning level you will have and as you become better able to physically respond. You are only 1 yr out from your GBS. DO NOT believe your functional level right now is what you will have for the rest of your life. There is NO hard and fast timeline for you to follow. Unlike a lot of other diseases/conditions, GBS doesn’t follow any set timetable over time.

As you can tell, GBS affects people physically very differently. What works for 1 may not for you and vice versa. If it is feasible, I also strongly encourage you to obtain appropriate counselling from a qualified professional who has experience helping people adjust after having had a significant (ie. physical) insult to the body happen. I wish someone had directed me in this avenue at the time when my life physically fell apart because of the GBS . It didn’t help being misdiagnosed from the outset either.

Call the Rehab facility you were in to see if any therapist there can provide you with a name/phone number of a Rehab therapist closer to where you live and then check out that avenue out too with a phone call or three. Be specific in asking what said person’s experience level is in treating someone with GBS, MS or other serious neurologic condition like a stroke that has physical features involved.

Learn to be able to ask for help and to find a safe person to help you re-direct your frustration and anger (both of which are quite normal I may add in having to deal with GBS contrary to what anyone else may say).

I can categorically state things do SLOWLY get better with time. DO NOT allow anyone to put a Timeline on how long a recovery can take nor to what degree of improvement you will eventually obtain. Everyone is different; GBS impacts people in varying degrees and longer term effects do last well past 1 year and/or could well end up being permanent.

Try to focus on what you CAN do. Give yourself very short term goals- aim to be able to walk a reasonable distance your are almost able to do now and force yourself to focus only on that aspect for the next while.

Muscles don’t know from zip about self imposed time frames. Your PT exercises you were shown how to safely do- make the time to do them every day no matter what. I would NOT recommend you walk without some sort of aid device- a cane, a walker etc. Whatever it takes that will allow you to walk with reasonable safety is the priority. Check out DME vendors in your area and perhaps think about eventually using a rollator, a device with wheels you can use as an walk aid device AND at the same time be able to sit on when tired, using your feet to propel you forward. You have a wheelchair now and that’s fine. It may not be what you will ultimately end up having to use full time. Only you and a qualified PT therapist can best know what you are safe enough, now, to use.

Best wishes to you and know that things CAN and DO get better!
Learn to allow your friends/family and perhaps a qualified therapist help you in your current transitional state. Don’t hesitate to find a therapist for your Mind as well as your Body to help you. Above all, keep moving but be smart about it and do so, safely.

It is perfectly normal to feel the way you do now, esp having to rely on others to provide you with assistance. No one ever chooses to have GBS. No one.
What matters now is how You choose to manage it. Keep pushing yourself within reason and BELIEVE you can regain a more semblance of your life post GBS. Some things you may never be able to do again. Only YOU can decide what that may involve.

Best of luck

To All,

Thank you so much for your words of wisdom and advise. It really does make me feel a lot better. My year anniversary is tomorrow and I have just been really down about it. I think I just had too high of expectations. It helps to know that it is different for everyone. I should really look at it in the sense that I have survived the first year. Look at the bright side, right?

My out-patient therapists I had were good and I think that they were just trying to give me hope when they said a year. That was probably not a good thing to tell me and my over-achieving personality. Lol! However, I think they gave me some bad advice too such as “the pool isn’t helpful, you need to walk on land.” When I do too much land walking my legs start to shake and I hurt a lot, especially in the lower back, hips and calves. I think part of it is I tense up, being very afraid to fall. When I work out in the water I can exercise longer (about an hour) and I hardly hurt afterwards at all. They also told me I should be up walking with and without my walker at work. That was not working out well at all. I tried to do it for a couple of weeks and I found that I was so focused on balancing and not falling that I was having a hard time doing the exams on the pets and paying attention to what the owners were saying was going on with their pets. It was too much for my brain to process all at once. My neurologist said that if I was going to work I should absolutely be doing it from my wheelchair and that “work is no place for PT.” He was also the one that told me the water therapy would be very beneficial for me. He was right again.

Everyone keeps mentioning medications for the GBS. I was never on any medications for it. I know there are no specific drugs, just ones to treat cetain symptoms. What have some of you been on? Did it seem to help?

Another question I have is how did you get to the place where you felt comfortable walking and not using a walker, cane, etc.? The therapists were just like “walk”. I soooo do not feel stable enough now, let alone back in April when they said I didn’t need to come to therapy anymore, to walk very far without some support. My ankles and feet do not feel strong enough and my legs feel heavy. A good wind would probably knock me over. Sometimes I don’t think others understand how your body feels. Your body mounted a mutiny on you, how do you trust it again?

I did have a really good day yesterday. I had my four week post-op recheck and the surgeon was pleased at how well I was doing and both of us are super thankful I had no signs of GBS relapse/set back. I was able to start mild PT two weeks after surgery and have been gradually adding in more of my exercise plan I have made for myself. The therapists really didn’t sit down and give me a list of exercises so I made a plan based on working out my legs, arms and core. I actually noticed last night that the toes on my left foot moved a little more than they have for the past year. I cannot wait until September 5th when I can get back in the pool.

I wish you all the best and I will keep in touch. You all are great people and I appreciate your support and encouragement.

Walking in the pool helped me tremendously. I walked forward and backward in a line and serpentine for couple minutes to begin with, then kept upping my time as I was able each time I went. It enabled me to regain my strength so that I was finally able to run again. I am almost 3 & 1/2 years out. Physical therapy and massage helped as well. I was able to see a PT who specialized in balance and I did exercises in the office and at home that helped me with balance issues, vision problems and vertigo that I had experienced because I was believed to have the Miller Fisher Variant. I found that most of my rebuilding was my own trial and error. I had exercises initially but no one really helped me after that. And I know what you mean about trusting your body again. I have been able to trust that I can push myself to a point but I still don’t trust it all together. I am able to try new things physically with success though now. I am hopeful that everyone continues to recover both physically and emotionally from this.

Tarhealing,

Thank you for the reply. I agree, walking in the pool is helping a lot. I have gone 7 times since being released after surgery and I can tell already that my legs like it. I did a mile today. I may have to look into a PT that specializes in balance. That would be great and very helpful. It is so awesome you are back to running. That activity would be on my list of things I didn’t do BGB (before Guillain-Barre’). LOL!! I always tell people I only run when chased!!

I too feel like most of my PT is my own trial and error. My PT/OT’s told me I could figure it out on my own so I am doing the best I can. I try and mix arm, core and leg exercises.

I seem to be having better days recently concerning the emotional part. I am excited to see my favorite neurologist in a couple of weeks. They are considering doing another EMG to see how things are going. I have mixed emotions about that. Because of the way my mind works I know that if the test comes back better it will give me a big emotional and confidence boost. If it comes back worse or unchanged I think it will devastate me. Also, I know that having it done isn’t going to change my syndrome or improve the chance of recovery. I figured I would just tell him all of that and see what he says.

I hope you all have a wonderful day.

I am having a wonderful day! I’m Seenie and I work across the Ben’s Friends network in Moderator Support. I skim and glance at a lot of discussion threads, and every once in a while I come across one that is special. This thread is one of those: it is positive but honest, and supportive in all directions. Thank you for your upbeat participation and your support of others. We all have better days as a result!

Seenie from Moderator Support

Hi, I wanted to reiterate what several others have said. Don’t let someone put a timetable on how fast you recover. My body as I stated in my introduction, is trying to cope with progressive MS and newly diagnosed CIDP. When it all started I felt like I had something to prove, to the rehab doctor who told me I was never going to walk or use my arms again( btw, I kicked his butt out of my room and insisted on a new doctor). We are all different, we all cope physically, mentally, and emotionally at our own pace. I have complete empathy with all of you and the smartest thing I did for myself, was say hello here.

Don’t wear yourself out, I personally should take my own advice, however, that is something I rarely do. But when you have people depending on you, you your clinic, me, my students, it’s easy to simply keep pushing yourself. But also, at least for me has backfired many times.

I hope you find a pace and program that work for you. I see so many on here stating they were misdiagnosed because so few people comprehend the disorders… CIDP or GBS… my neuro has experienced several patients with both, so I was luckier than many… did I wish he was wrong, yes… but I’m realizing I’m going to be ok… at least emotionally. Just check out the hot pink sparkly wheels… I figured if I couldn’t hide it I show it…

Like many, I’m learning… and listening… I hope you are starting to see some progress, a little is better than nothing.

Kris

Hi Kris,

I have no idea how you came across my name let alone my Email address.
Are you sure you wanted to send the reply below to me?
I am Not a New Member.

I did recently reply to someone else’s post, my first one in a very long time, who was having significant issues with her daughter involving a perceived lack of family support but I personally wasn’t seeking or expecting any feedback response.

I was diagnosed, finally, with CIDP in 2009 after having had a very incapacitating bout of Guillain Barre Syndrome, a neurological condition.
I underwent an extensive outpatient rehab program of sorts back then as well that I pretty much had to direct myself with my willing Internist’s involvement to so order for me medically so that I could use my health insurance to pay for it as bizarre as that may sound.
I would like to think programs today are more informed/ much better than anything was back in 2009 but I am not holding my breath.
I concur the medical community is Not Good at piecing together bits of the Puzzle that ultimately identifies a CIDP diagnosis let alone has much of a clue, even still, as to what services have proven to be most helpful for people afflicted with it (sad as it is to say that even now!)
Probably because it takes a lot of thought and time to put the puzzle pieces together.

I would like to wish you the best in you endeavors,
Lee