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Living with Polyneuropathy CIDP, GBS, & CMT

After effects from GBS years down the road


#1

While going thru tests for my disability SSI, I was told I still had some issues left over from my GBS from 35± years ago. I compare my muscles to an electric motor that only gets 100 volts to run instead of 110/120. It works but wears out because it has to work harder. My muscles are worn out due to weaker signal from the brain. I remember folks asking me how I was doing afterwards and said great but I did not feel as quick/fast as before. I was never “fast” but I could react quickly. Anyone else feel like that and now have strength issues, legs especially?


#2

I cannot speak for GBS, but you are describing my story. I also after going on disability and finding a competent Neurologist. My recovery so far 1 year into treatment for CIPD has been IVIG. I have regained strength but am not @ 120 Volts yet.


#3

Hello…my mom was diagnosed 2 years ago with GBS…She was on life support. Although she is only using a cane now she still has residual issues


#4

Myron,

Hello there! You describe how my legs feel perfectly!!! I am going to start using that with people that ask me how I am doing. I have had GBS for 13 months and I am improving but I have such a hard time trying to describe how my legs feel. I usually say they feel heavy like I have ankle weights on. It makes me not react as fast as before. I also get tired more easily, just like you say. I’m sorry that you are still having effects of your GBS so long after having it. I am walking in the pool and that is helping my leg strength but I think this will be a long battle. I have a feeling this is common for many that get GBS. Thank you for your great analogy!


#5

Hi. Did you develop muscle twitches during tour recovery? I had then all over initially but they have slowed and the pop up anywhere from 1 to 10 in a day now. I am 11 mobths since onset of GBS with dysautonomia.


#6

AngelaFlorida,

So sorry to hear of your diagnosis and struggles. I did not notice the twitches until about 8 months or so after I got the GBS. They aren’t painful and big but just feel strange. My neurologist just thinks it is from the nerves trying to regroup. So maybe a good thing?

I hope you are improving and continue to improve. We have to remember to celebrate the small steps and not dwell on the things we cannot do yet. We will get there, right? :wink:

Take care!!!


#7

I had so much twitching! I couldn’t sleep for all of the activity in my legs. Someone along the way told me it was better to feel things than not. It got better with time but I still feel faint twitching after a lot of activity. I think it’s probably regenerated nerves which I don’t think work quite as well as the originals but I’m glad they work. I’m almost 3 & 1/2 years out from my GBS. I can definitely tell where I was hit the worst but I got so much better with time, pool walking, and strength training. I am running 3 miles now and have run a few 5ks since but still can’t run like I used to though I’m thankful to be able to run at all. My legs and face were really affected and my grip strength is still kind of weak. I was never paralyzed but I needed assistance to walk so it’s really amazing that I can run again. You have to celebrate the small steps and find the positives along the way. And don’t give up hope!


#8

Thank you for your reply.

I was diagnosed late after I suffered most of the illness. Luckily I never lost my respiratory function or I would have died.
This is going to sound weird but I knew after they told me I had GBS that was what it was but when my body started twitching all over about 6 weeks after onset I freaked out thinking they got it wrong and I had als. I twitched all over for four or five no ths then they atarted to slow to now maybe 0 to 5 a day. More if I exercise to hard. I am not back to where I was when I became ill but I have improved a lot. I want to bike and run again. Having pool therapy so hoping it helps. I had a lot of autonomic issues with my GBS which I am told was part of it but it resolved once I started to recover more.


#9

It is interesting you should say this.

I went to my neurologist today. I have normal strength on my exam and my reflexes are back [ I am 2 wk post IVIG]. But I am not able to walk very far just enough for ADL. My ankles are in pain also my knee joints.

So how does one explain this. She is saying I am better but I do not feel strong enough.


#10

Greenpea,
I just asked my neurologist this very question. I can lift a 40lb bucket, but can hardly get off the couch most days and can hardly turn over in bed. She explained that I still have nerve damage the body is sick. She gave some examples; like when a cancer patient is getting chemo, they have strength but not the stamina to do things as their body is dealing with fighting the illness. She also explained that depresssed ppl have full strength, but feel like they cant do anything bc they have no energy.
This is a bizarre new world for me. I can get 20-40lb item down my stairs, but can hardly roll over in bed. My walking has increased significantly since not being able to walk after three different attacks (the last relapse was back in June 2017, onset in March 2017). I can walk for a full day (spent a day at San Diego Zoo), but pay for it dearly at night with hyperactive nerves and the inability to sleep. The Zoo trip took two days of recovery. Gabapentin helps with the hyperactive nerves.
My symptoms may be permanent, only time will tell. Everyone’s symptoms and recovery is so different. I hope this helps.


#11

In my area finding a Nero that really truly knows gbs is a notta. I have residuals and still take meds. My colon has been effected and bladder. I do have twiches, and some terrible cramps. I am 4 and a half years out of the on set of this crazy ride I get very fatiuged alot. Balance sucks , yes I work out , one thing no one has mentioned I fell as I am ageing in facial looks faster then normal. My Nero said and I quote, after 9 months you are well now. I don’t understand what is going on all your test are coming back good . Nerve rejuvvation is 80 per cent. Don’t understand. There you go she new nothing of the syndrome, only what text book says. My mental health dr. Knew more then her about gbs. Well enough rant about that hugs to all , so glade I have this site merry Christmas. Drs. Should follow this site and other site for a little bit of insite


#12

Hey. I am with all of you. The doctors only know what the studies from 80s and 90s state. I cant get many answers.
I hate my muscle twitches they are improved from what they originally were but I still get worried they mean something. The days I am weak make me nervous.
I wish they had more answers. I read a lot after I was ill and these illnesses are so difficult to know what is going on. I want to not be worried anymore. If these last symptoms woukd go away I woukd be thrilled.


#13

I am glad you are better. I regained a lot back fast but I received no treatment. My tests all showed no permanent damage basically normal like it never happened. I had a bad case almost to respiratory distress but couldn’t get a ER doctor to do anything they kept saying virus and migraine. I was through the worst before a neurologist said GBS and I was lucky to be alive.


#14

Thank you so much.

It is making sense.

I am going for long walks, 1/4 mile with my walker. I am trying to get around the house without walker today and will see how it goes. I think it is all about testing and moving forward and back based on responses of the body.

I have just started to get hand muscle weakness so I will see to handle that…it is strange to see I can’t do things I used to do before…

Night time is pay back time for sure. I am taking nortriptiline for the pain and I love it, just 10 mg at night and I am pain free for 15 hours.

I read your story, you did marathons. Very impressive. I did a few all before my daughter was born, now the marathon I have is keeping up with her ;-}


#15

Wow!!! it is hard to be sick and to not be appropriately diagnosed make sit even worse…I sure am glad you recovered without anything adverse. my neurosurgeon pushed me to go to the Er and I sure am glad I obliged[ with pressure from my DH]


#16

I showed classic signs of GBS but was unlucky finding a doctor who could recognize it her run the US. They are all so hyoed on getting people in and out to save the hospital money that if they first tests dont tell them what it is they just say we don’t know come back if you get worse. What is worse than that my primary was in the room googling everything he thought it was and he was wrong Every time.
Googled. I couldn’t believe it. He first said virus then inner ear infection then migraine.
Well I stayed up e and sufferers through the worst on my own and I am lucky I lived through it. First emg I had done 2 months later showed polyradiculopathy but by the third month it had resolved. Then my emg 6 months later was normal. So the guess was miller fisher variant. As far as demyelination or axonal they didnt know. Since there was no long term damage on emg. I had yerrible autonomic issues. Gastroparesis orthistatic hypotension tachycardia. Urine retention luckily that only lasted few weeks. I couldnt walk unassisted. I yried to walk to my MRI but was so weak I sat down on the floor had to wait for a wheelchair and at no point did the doctors think this was strange. I was a previous very healthy 43 yr old woman never at the doctor. Would never go to the doctor if I could avoid it. I am a nurse by the way and would not use the ER either. I always try to go to the office. It was a horrible experience and made me very ashamed of the healthcare in America.


#17

Wow!!! reading this makes me wonder. I can say my PCP had no clue when I cam in with foot pain. She referred me to the podiatrist for Morton’s neuroma. The podiatrist smartest guy on the block checked my muscles for weakness and said this is not a foo throb it is a nerve prob and I got a back mRI that sent me to the physiatrist ho sent me to the neurosurgeon who referred me to the ER due to actually worsening muscle weakness and concern for GBS.

I have autonomic symptoms: urinary, dizziness and mental blurring where I can’t process information. It stopped after the ivig but came back this past week. I am worried that the whole illness may be coming back.

My thinking has slowed down too and I am forgetting things mid sentence.
There is a lot of fatigue. I walk 1/2 hour or speak 1/2 hour and I need to rest for 2 hour. I am a Pediatrician and I am to sure if I will be ready in 3 wk for work as the neurologist believes.

I have to say my muscle strength and reflexes are better but that is not translating in to the pre GBS me.

What was your journey to get back strength?
Did anyone have any symptoms lil slow thinking and memory problems and severe fatigue?


#18

Severe fatigue and there were days I thought my short term memory was damaged.
How are you twitches doing now? I keep trying to figure out why we have them. If it was due to demyelination wouldnt they go away if the myelin comes back or do we all suffer so e form or axonal damage and it makes longer to repair if it ever does. A lot of people on the GBS facebook say they have them all day and Some are 39 years post GBS.


#19

did the fatigue and memory problem improve? and how soon?

The twitches are better when I started nortriptiline for pain. I had to stop nortriptiline last week since i have autonomic symptoms again. Now I have severe fatigue without the nortriptiline and the pain is coming back today. I wonder if the twiches and cramping will come back!!!


#20

It come and goes. I was or amitriptyline for pain. It is same I think as nortriptyline. I stopped it and my pain did come back. I dont know if the amitriptyline helped with the twitches. Your memory will improve the lonher out you get but you are further than me. I am at 15 months end of January.