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Living with Polyneuropathy CIDP, GBS, & CMT

Dealing with the fear involved in the GBS journey


#1

Hi. I have just joined this forum and am lying in hospital in darwin australia. Diagnosis: GBS. This is my story: monday this week I noticed that I struggled to walk up the stairs.I thought it is something that will just go away. Next day on Tuesday the symptomps persisted and my GP suspected GBS and sent me to hospital. I am now on a course of immunoglobaline for 5 days. I am 49 years of age and can now walk with a walker. My hands are really weak. Getting the tooth paste out is a real effort. Nearly impossible. I read up on the net about GBS and am finding it really scary… the possibility of being in ICU, paralised and on the ventilator. This is scary. Everyday I feel how I am getting weaker and weaker…and I don’t know when the disease will decide to stop progressing.how did you guys cope with the situation, the fear and the helplessness. Sometimes while I am lying here I just want to cry. I also noticed that my friends need to be strong to support me.


#2

Cheer up, Beau! Sounds like the doctors got right on it, and you're getting the treatment you need. That's a good thing, some people go for a long time without the correct diagnosis. The IVIG is intended to stop the progression of the nerve damage. Sometimes it takes a while. Yes, it may get worse, and people frequently end up in the ICU on a ventilator (I did), but usually get better. If you're walking with a walker, you're doing pretty well -- I didn't progress to a walker until about 5 or 6 weeks into it. One thing GBS will teach you is patience. Good luck!


#3

Beau, the good news is that they diagnosed it quickly and got you on the IVIG. I was diagnosed a day or two behind your schedule - when I started the IVIG I didn't really have any issues with my face, just my hands and feet into my arms and legs. Once I got on the IVIG, things bottomed out and began to improve. It sounds like I had the same degree of weakness - toothpaste, using silverware, etc., all issues. My doctor told me when they began the treatment that it was a good sign I was sitting there able to speak with him, and if I was still able to speak with him 3 days into the treatment my prognosis for full recovery was good.

That is pretty much how it played out. It was exactly 2 months ago I went into hospital - I don't have my full strength back, but definitely enough for normal day-to-day stuff and even back to playing basketball with just a slight impact on my range, speed, etc.

So, stick with the treatment and see how it goes. I was more concerned when I didn't know what was wrong, but felt better once treatment started.

Hope that's helpful, and wish you well.

Mark


#4

At least your doctor suspected GBS in the first week - it took my medical team 3 weeks to properly diagnose my illness. I pray that the quick treatment you are receiving stops your blood cells from attacking your body quickly.


#5

Hey there Beau I was diagnosed on July 28 this year. hit my arms the worst. I was ICU for a week, remember nothing of it. I was in hospital 45 days total. could always walk, just had to build strength. I lost 30 lbs, and today my left arm is still non functioning. It seems everyone gets different levels and recovers at different pace. I recently started back to gym to build strength, and trying acupuncture as well. Keep the faith buddy, best of luck. Reach out anytime if you wanna talk. I have cried many times!

Dwayne


#6

Beau, I was so afraid when this was happening to me because I didn't know when or if it would start turning around for me either and answers were hard to come by. It was so hard to cope and I did cry. It felt like my body was self destructing and I thought my number was up just out of the blue. I am 49 also and was not ready to throw in my towel but I felt my life slipping from me because everything changed so drastically so quickly. I didn't know how to fight something so unknown and my family didn't know what to do to help me. Good news is that people do recover from GBS. You are so lucky to get the diagnosis early and I think this will really help you with your recovery. This forum has been great because of the support and knowledge from people with varying degrees and experiences with GBS. I am recovering now and would never have believed it so I know from experience it happens. I hope it turns around soon for you. That's great that you can walk. Don't get too discouraged and know it takes time for your body to heal and nerves to regenerate. Good luck!!


#7

Hang in there. It WILL get better. It truly is scary when everything happens all at once. It's a whirlwind of doctors and treatments and then a long haul of therapy. I know because I've been where you are right now. I did cry and gnash my teeth and say 'why me?' A lot! Now that it is all behind me, I have found that I have a lot more respect for those with disabilities. My empathy has grown. I look back and I realize that if I had not gone through all of that, my path in life would have been very different. Hang in there and keep us in the loop as you progress through this.

We are all with you. Best Wishes for a speedy recovery.


#8

You are lucky! (although you probably don't FEEL very lucky at the moment) I went through hell before being diagnosed. It was like a nightmare. I kept getting sicker and sicker and I made several trips to the doctor and to the emergency room before they finally admitted me. They kept giving me pain killers and sending me home. I almost died. I had never heard of GBS, and apparently neither did any of the doctors I saw. Some of them thought my symptoms were psychological, caused by anxiety. One said "either arthritis or an injury".Some of them acted like they didn’t believe me, and I could tell they thought I was faking. One of them even asked if mental illness ran in my family. I told him, "Yes, but that's beside the point!"( hahahaha! just kidding about my response....but he did ask me that question!)

I was sent to a cardiologist, a gastro guy, back to my primary care physician, but never to a neurologist. In fact, I didn’t see a neurologist until I was finally admitted to the hospital, almost a month after the symptoms first started, and even then, it took them a day and a half to figure out that it might be neurological and maybe consulting a neurologist was the thing to do. I was almost totally paralysed by then, and in excruciating pain.I had undergone every test under the sun, had so many different kinds of blood tests I am surprised I had any blood left, They were thorough. They did every test except for the one I needed, a spinal tap..The neurologist knew what I had right away, and the spinal tap confirmed it. I wasn’t scared when I found out what I had, I was relieved to finally have a diagnosis! The scary part was gradually losing my strength and control of my body, being in pain, and nobody knew why or could help me.

Yes, you are extremely lucky. Your doctor is sharp, and well informed.

It might get worse before it starts getting better but at least you are safe in a hospital so they wont let you die....they will take care of you!

Best of luck to you....speedy recovery!


#9

No worries, Beau! Sounds like you're responding well to the IVIG treatments.

I will be 7 months out from diagnosis on Saturday (Nov. 1). I've spent a total of three weeks in the hospital, on three separate occasions...each time, getting another 5 bottles of IVIG. I'm slowly getting better...and, seeing more improvement since passing the 6 month mark. My hands were BAD too! Very uncoordinated and weak...with a constant buzzing sensation that never ceased. Just THIS month, my hands stopped buzzing...and, I have nearly full strength in them.

Right now, my remaining symptoms are confined to my feet...from about the arch of my foot, to my toes. I'm walking and driving well....but still, cannot resume my workout regimen of running and cycling. Also, I still have some residual body weakness which usually forces me to lie down for awhile in the afternoon.

This is scary stuff....NO DOUBT. But, as many have said here before -- the keys are patience, and learning to accurately pace your activity. My biggest problems have occurred when over-exerting, which resulted in a relapse of muscle weakness.

You're doing REALLY well for the first week! Hang in there, and stay positive!!


#10

My experience was a lot like QweensGambit. It took them 5 weeks before I finally got the right diagnoses. So believe us that you are extremely lucky and that your doctor knows their stuff to catch it so quickly. My hands were like yours very weak at the beginning. But it does get better.

The one thing this GBS teaches a person is patience. It is OK to have a good cry but then you must think on the positive side. It was caught quickly and things will get better but it will take time. That you can walk with a walker so quickly is amazing. So I think the IVIG must be working for you.

I am 60 years old and almost a year into my recovery from GBS. I learned so many things from this group that I don't check on the web anymore for info when I had or have questions.

Please keep the faith and try to have a positive attitude it helps. You are doing amazingly well. Come back to this group anytime you need to talk, they have been a great help to me. Dollywood


#11

Not everyone is effected to the point of ventilators my daughter stopped at the torso they say if starts at the feet and works it way up. The sooner they put you on the plasma IV will help it to not progress. You heal from the top down. Feet and legs are the last it took my daughter 3 months to just walk a small amount with the walker
Hoping for the best it does go away. But you need to have ALOT of patience


#12

Beau, I'm in Brisbane (Was beginning to think I was the only one in Australia!). I'll be 1 year into recovery at the end of November. Please feel free to message me anytime you need to, I know how lonely this illness can be for us isolated folk.

This forum is a great place to cope with the fear, I only signed up a few weeks back, before that it was just me and it's a real struggle. Having people who know what you're going through to share your story with is really helpful, and there's a lot of great information on here. You're going to have a lot of questions, and this is the place to get them answered.

I was in the same boat as QueensGambit and Dollywood, when I first reported to my GP with numbness, pins and needles and paralysis in my arms and legs he thought I had a trapped nerve! It was almost 5 months before I finally got in front of a neurologist who was able to diagnose me inside 2 minutes from description of my symptoms and journey since the start.

Make sure you share as much information with your friends and family as you can - this is a long recovery process. Getting the IVIG so early is really great, and being in the hospital you are in the best place. Keep positive and remember, you WILL get better!

I can relate to the toothpaste thing, also standing on one leg to soap your feet in the shower without falling over, escalators (really affected my balance, avoid them!), lids on jars, bending down to talk to my children, even putting one foot in front of the other without having to concentrate like you're solving algebra equations.

But you know what - all of those things I can now do again, and you'll be able to as well. I'll be thinking of you and sending best wishes your way so keep us posted as you recover


#13

Wow. Thank you all for your encouragement and support. It is really powerful to get feedback from people who have been in the same boat. Right now I am receiving my third drip of immunoglobulin. They want me to wait for a physio before I attempt to get out of bed.as I may be weaker today.The thought of eventually not being able to go to the toilet by myself and having to do everything here in the ward with other people and patients around is frightening.i am glad I am still able to type on my smartphone and keep in touch with the world? I am in the neurology ward now and got a window spot which is great to be able to look outside. I realise now that I am lucky to be receiving treatment so quickly. Darwin is a small city with 125000 people. And here in darwin the GP, and then the examining doctor in hospital diagnosed GBS. And to be 100 % they got a neurologist to assess as well. A lot of the staff here know about Gbs which is amazing. For the last few days I have been having small uncontrolled muscle contractions in my legs then shoulders and upper arm. Does anyone know why that is ? Thank you all…you are great…love from darwin…


#14

Beau,
The uncontrolled muscle twitching is from your nerves trying to re fire up. It’s a good sign. It means they are trying to get back to normal. I’m six months in recovery and every now and again still get them.It is a long process but just take one day at a time.Sending good thoughts and prayers.


#15

Hey Beau, I felt it was a huge step forward when I could push the call button for nurse. (Was unable to do that for several weeks. Unable to call out, either, because of the trache, so I was feeling pretty helpless there for a while.) So if you're still able to work your cell phone (not only the strength, but the fine motor skill as well), you're doing pretty well! (And going to the bathroom by myself? That was way later. TMI!) I think you'll do OK. Cheers!


#16

You will be just fine - it takes awhile - but you will come out of this. I know - been there, done that in 1988.

Nebretta


#17

Hi Beau (from Canberra!)

Im so sorry you are going through this but reaching out to others is a great plan! I have often read the responses from others on this forum and its made understanding what I am going through much easier. I think that has been a big part of the battle for me.

Im only about 9 weeks along in my GBS journey so that awful period of being diagnosed and admitted to hospital is still very fresh in my mind. I consider myself very lucky, I couldnt walk very well, had a lot of weird and bad muscle pain in my back, neck and legs, my skin was numb from the waist down and my balance was simply terrible but most of the problems were isolated to my legs. I thought I would share my experience (as it is so fresh) in case it helps a little with your journey!

The scariest part for me was not knowing whether it would get worse and, beyond that, not knowing how long before I would get better. Being a 40 year old locked in a neuro ward with three very elderly stroke victims didnt help! Reading about what could happen to me made it worse. Thank god for the window i had!! I could stare out there and wish I was anywhere else. I just had to try and put all the 'what might happen' thoughts out of my head and focus on what was happening to me today! easy to say, hard to do!

While everyone's journey is different its important to remember that you will get past this stage and you will improve! Its sometimes frustrating that it isnt happening quickly enough but it will steadily happen. In hospital I could shuffle along, relying on holding my husband's hand for balance. I had to lean on a wall or sit down to get dressed and even then it was a massive effort! Washing my hair in the shower was a nightmare because i had NO balance once i closed my eyes. I am now five weeks out of hospital and I can now walk (slowly but hey - i can walk!) for about 20 minutes with the dog, in the last three days I have found I can hop and jump (small ones and only one or twice before I rest but a massive improvement! ) I even tripped over a branch yesterday and my foot naturally came out to stop me falling on my face - now that is progress :).

While being in hospital is terrible, its the best place to be. As someone else mentioned, they wont let you die in there and that is really reassuring! When I got discharged a lot of my anxiety attacks were because I felt like I was on my own, trying to understand my symptoms and second guessing my improvement!!

As for those twitches, I never had those but I have found that GBS delivers a range of weird and wonderful sensations. Over time they have changed from numbness, pins and needles and burning to weird electrical pains and other sensations. From what I have read here, the changes are your nerves ' reaching out' to make connections again. While sometimes it is unbearable I always see them as a sign im getting better.

Lastly, cause this has been a marathon typing effort!, I kept a daily diary in the early stages when everything was really bad and i was feeling overwhelmed and demoralised. It was my way of writing down what I was feeling every day and it meant that I could go back and see how everything was improving. Those little improvements add up to a lot over time. My physio even videoed me (on my phone) trying to walk heel to toe so that I could compare my progress over time. That made a big difference for me because the improvement in even two - three weeks was significant!

Good luck with your journey. Hang in there and feel free to PM me if you ever want to chat. Ill be sending positive thoughts your way!

Tam


#18

I had lots of those small uncontrolled muscle contractions. They started the first week then got so bad that it was hard to sleep because of all of that activity(hundreds of twitches at a time). Some I could see but most I could not. My legs were extremely weak during that time. They were mostly in my calves at first but moved upward to other areas that were affected with weakness like my arms, shoulders, back and face. I have been told that it is a good sign because it means that the nerves are still trying to function and have a good chance for regeneration. This has proved true for me because I have regained so much of my strength over the last 4 & 1/2 months and the twitching is so minimal now that I don't even notice unless I get over fatigued or am lying very still at night and try to pay attention to it. Now I can actually count the twitches where before they were too numerous to count. But I really don't notice them because I just accepted it as part of recovery & they are resolving along with everything else.


#19

As locals in Hawaii say....Howzit Brahdah Beau!!! Hey Beau, one thing is certain and that your GBS will get better. I was paralyzed from my neck down, I was in ICU for 9 days on a ventilator. My GBS was the worst type you could get. Not only the outer skin (Mylien Sheath) was damage but also the inner core (Axon). My neurologist told me he expected me to be out of work for at least a year and a half to two years. As I laid in bed I feared that I would not be able to walk let alone stand up ever again, But through hard work and constant prayers to God I was back to work in 7 months.

Work hard in your therapy (but not to much to the point of exhaustion). Be patient. GBS doesn't affect everyone the same.

Believe!!!


#20

Hey Beau
It is normal to be scared. I cried a lot the first few days. I remember getting so frustrated because I coulldnt brush my hair or hold a tooth brush. It will get better. Ivig is amazingly strong, and it will stop the progression. If you are already on the medicine I don’t think you have to worry about being on a vent. Just remember that this is only temporary. The prognosis for gbs is very good. Stay strong, and you have a whole support group of people to talk to when you need too.