Hi all, I am wondering for those diagnosed with CIDP- how were you diagnosed?

Hi everyone, I might have an opportunity to go to either America or South Korea, I need to ask which of these countries best at treating or helping me with my illnesses, (gbs, polyneuropathy, Ataxia). or just have better Neurological Hospitals.

Just wanted to ask are hiccups related to gbs? I had gbs 5 years ago and since then I am having hiccups problem. Once they come these are not going until I take medication. Hiccups can persist for days. So are they related to gbs or some other addition of problems in my already miserable life? 😑😮‍💨

Hey everyone I was recently just diagnosed with a mild case of GBS.

A few weeks ago I felt a weird tingling/tightness in both of my cheeks. Followed by weak legs and tingling in my feet. That progressed a week later to desensitized skin all over my body. I later had burning in my knees when resting after I walk around. Also have a small loss in taste and currently red burning hands which is moving to my feet.

I went to see a neurologist who sent me to the ER to get evaluated and they took an MRI of both my brain and spine with and without contrast possibly suspecting MS. Both came back unlikely MS with no visible lesions. The hospital neurologist ordered a lumbar puncture also because he couldn't diagnose what I had. The lumbar puncture came back with high proteins which surprised him so he is saying he thinks it's Guillain-Barré syndrome based on the MRI showing no lesions which points to MS. He is saying based on ruling out other conditions he thinks it GBS. He put me on 3 doses of IVIG which I am seeing a small progression. I am still awaiting the results of the Oligoclonal bands from my CSF. Question is did your Lumbar puncture give you the diagnosis or some other tests as well? I know GBS is so misunderstood and how to pinpoint I am wondering if I was properly diagnosed.

Hello!

I hope maybe someone can maybe give me some insight from their own experiences or from their loved ones who have been here...

My husband was admitted on 3/31 after waking up in the middle of the night with numb hands and feet. Within 24 hours of being admitted, he went from walking carefully due to numbness, to being paralyzed from the face down and intubated. He started IVIG the afternoon of the symptoms presenting, and switched over to plasma exchanges the next day (7 in total), and then back to IVIG for 5 doses over 5 days- none of which gave any levels of improvement, unfortunately. We've gone from ICU to a long term acute care facility, and still remain on mechanical ventilation via tracheostomy most of the time. We are in week 7 of this nightmare, and his symptoms have not changed for weeks, which makes me believe we are well into our nadir.

I know early on, he said he was numb all over on his arms and legs. To what degree, I didn't try to assess (honestly didn't think of it with everything that was going on with him and my own health). Last weekend, I decided to take notes of what parts of his body and planes of his body was feeling what, by doing a light scratching on his skin. He still has parts that are numb, other parts that feel like they're "waking up", and others that are no longer numb. I can't say definitively that those parts have not always felt that way for him, but he thinks some of those "waking up" parts are new improvements.

All of this to say/ask- for those who went through this, did you feel like you went numb and regained feeling as well? Did you start moving parts of your body again around this time? The posts I've read all go from being in a hospital to walking at point.. but don't really address the stuff that happens in the middle. I know everyone is different (and I'm so tired of hearing that, but I KNOW that really is the answer), but just to have someone give me an inkling of what we are looking at in the coming weeks would mean so much to both myself, and for him and his own mental health with it all. Knowing he's going to be able to hold my hand again in the coming weeks means more to me than him being able to walk in X amount of months, if that makes sense?

TIA!

Hi everyone! I’ve posted a couple of times inside of this group and I have to say that I’m very appreciative of everyone that has taken the time to reply back! I wanted to create this post to ask if anyone else’s a similar story to mine when it comes to CIDP.

so, long story short, in May 2023 I started to notice some bug biting feelings on my arms and legs. May 2023 to the beginning of October 2023 the bug biting stopped, but then weakness started to happen in my arms that migrated to my leg. I was doing a bit better with PT but then I got sick with Covid in December and on Christmas Day woke up and paresis, which is basically extreme weakness in all four limbs.

I’ve been to the hospital twice, once was in January where they did some test and were suspicious that it was CIDP but not totally convinced so they gave me IVIG in the hospital, it was 120 g, and then gave me IVIG infusions every every three weeks at 80 g. the IV worked initially, but then as time went on, I went through a constant up-and-down of symptoms and ultimately had to go to another hospital 5 weeks ago because I could not walk and was nearly paralyzed.

Second hospital visit did more tests and finally confirmed that it was CIDP. It was just an odd variant because I have predominantly motor issues with a few sensory symptoms, like numbness and tingling in my toes and fingers. They decided that IV wasn’t going to do what it needed to and so they put me on plasma paresis for five treatments. The treatments did amazing and I was feeling great for about 2 1/2 weeks after getting out of the hospital. I was walking fine. I was able to lift my arms and do pretty much everything independently.

However, the neurologist that I’m working with put me back on IVIG at 105 g every three weeks. I was able to have a treatment done one week after getting out of the hospital. Now, nearly 4 weeks out of the hospital, my weakness is starting to rear its head again oh! And I also deal with double vision that came about only after doing the IVIG treatments.

No, I am looking at having to do another Plex treatment in order to get the symptoms to go down and they’re looking at possibly starting me on Rutiximab.

TLDR, for those of you that have CIDP it’s primarily motor-based, did you have to do an immunosuppressant and IV or completely throw IV out and do an immuno suppressant and a steroid or something like that? I just feel that IVIG just feel that IV set me up for failure.

Hey everyone I was hoping to see if anyone had a timeframe on when IVIQ starts working or seeing results.

A few weeks ago I felt a weird tingling/tightness in both of my cheeks. Followed by weak legs and tingling in my feet. That progressed a week later to desensitized skin all over my body, where I lost a lot of feeling. I now have burning in my knees when resting after I walk around.

I went to see a neurologist who sent me to the ER to get evaluated and they took an MRI of both my brain and spine with and without contrast. Both came back negative with no visible lesions for MS. The hospital neurologist ordered a lumbar puncture also because he couldn't diagnose what I had. The lumbar puncture came back with high proteins which surprised him so he is saying he thinks it's Guillain-Barré syndrome based on the negative MRI for MS. I've been in the hospital for days getting IVIQ. I thought I started getting feeling back on my skin after the first dose but now I'm pretty much back to the same symptoms as when I went in and now my hands are getting red and burning. The doctor said my GBS case was mild but I’m starting to think I don’t have GBS and maybe another autoimmune disorder. Can anyone speak to the timeframe on when IVIQ starts working or if my symptoms looks like GBS? I know it takes time to start feeling better I am just worried about a misdiagnosis.

TLDR: I was able to fully recover and get to a high level of athletic performance. I hope it can inspire others to keep their morals high and hope for the best.

I was diagnosed with GBS in 2016 at 23 years of age and was fully paralyzed and had some difficulty breathing.

Now after 7 years at the age of 30, I’m as strong and healthy as I’ve ever been.

I was hospitalized for 2 weeks and received IVIG treatment. It took me around 2 months to be able to walk independently again.

It took around 2 years to fully recover and then I started rock climbing and reached to a relatively high level in the sport.

During 2 years of recovery, for the first two months my recovery was super fast. Then I plateaued for one and half year and nothing seemed to improve. I was weak and had tingling sensations and neurologic pain on extremities. I would regularly get painful spasms in random muscles.

Then I changed my diet and started removing many things from my diet. First I went the keto route and as a consequence of it I stopped consuming glutens, lectins, grains and legumes. I immediately improved, I got off the pain killers I was constantly consuming since the onset of the disease and spasm and pains significantly improved.

Then I experimented with carnivore diet, and within few weeks I was completely normal and didn't have any issues. Even to this day I'm following a carnivore diet. Prior to carnivore diet I didn't have enough strength and flexibility to go up stairs. But after a few months of carnivore diet, I was able to deadlift 100KG without much training at bodyweight of 54KG.

I explained all these to let you know that it's possible to fully recover to the extent of being able to do sports at a high level.

I'm open to answer any questions about my experience with recovery. ❤️

5 months into recovery. Upper body is coming back fast, about 70% of the weight I used to lift in the gym before GBS. Calve and ankles can resist thero bands, but I cannot get on my toes and ankles feel weak on hikes.

Has anyone had a delay in their calve strength coming back, but eventually got stronger over time and was able to run? If so, when were you able to walk, jog and eventually run?

Well, I'm a two-time winner of the Miller Fisher lottery. First time was back in 1992. Second time was 2018. I was wondering if anyone has had long-term psychological effects from the disease and/or treatment. Others have noticed personality changes in me in the past few years and emotionally I have been struggling even though my life has been good. Just trying to figure what is going on...

Hello. My mom is battling with CIDP and she does not have any movement waist down, her arms and hands are losing mobility, and now she has trouble breathing.. she is currently going through the process of being approved for disability but that takes god knows how long. She needs help now and has no insurance is there anything I can do to help her?? Please, thank you

Hi all, My husband went into hospital two weeks ago and was diagnosed with Guillain Barre. Apparently he was super lucky they caught it early - he hadn’t really lost much mobility. He did 5 rounds of IVIg and was discharged on day 5.

Since coming home he has been exhausted, spends most of the day in bed and is experiencing some symptoms that are worrying - like achy joints and his heart racing.

Just now he was sitting watching tv and felt his heart start to race and his pulse is 118. Is this to be expected as part of recovery? We feel like we were given very little information about what to expect and what we should watch out for / be alarmed about.

He was turned away from ER twice before they finally admitted him last week so we have lost some faith in the medical system right now, although he got excellent care once he was actually admitted.

Appreciate any advice anyone may have!

My sibling, in his mid 20s, had AMSAN variant. Was on ventilator for 2 months, and currently, about 4 months out, is able to stand with some support for about 30 minutes. The doctors as usual cannot give a timeline for recovery, or even if it will be complete.

Psychologically, it's very hard on him as well as the family.

Wanted to hear some of your positive experiences to see how fast, and how completely, you recovered from AMSAN.

We've seen good recovery in 4 months, seems like tracheostomy and Ryle's Tube could be out in the next month, and he is almost near 3/5 power in all muscles (has just started standing briefly with support). Could anyone make a prediction based on their experience?

Hi all,

I was diagnosed with GBS about a week ago. I also recently tested positive for mono a few days prior to the onset of GBS symptoms.

I first experienced tingling and numbness in my feet and within 48 hours, I could barely walk. I then went to the ER where they immediately suspected GBS, thankfully.

I was transferred to a hospital that possessed the required neurological department and was put on a 5-day IVIG treatment cycle. I was discharged the day of my last treatment.

I haven’t really noticed any improvement, as it’s been a few days. The symptoms did stop spreading. I’m 22 years old and I’m currently a Division 1 cross country athlete, so this is a very strange time. Any advice on recovery? I totally understand it will take time and Ive accepted that I may not get back to competitive running again. Other experiences would be appreciated.

My father has been on a five year-old to recovery. He is in his early 70s and at this point he has improved and plateaued. He is going to the gym and pool, but still needs canes to walk and his hands do not fully open.

I have read the previous post regarding stem cell therapy. Not much info and there is not much online either my concern is, at his age, I feel like I do not want to be responsible for initiating any damage.

Has anyone heard anything new regarding stem cell therapy and has anyone here tried it ?

I (27F) was diagnosed with polyneuropathy 2 or so months ago and am starting IVIG soon. Honestly didn't think it was serious- I had a nonchalant phone call with my doctor for a few minutes. Didn't get much info on the medication he was prescribing. I only researched more about it once I got the insurance authorization accepted in the mail.

I just got a lumbar MRI today as he wants to do more tests to find a cause.

I just wanted to know if they are considered the same disease.

My symptoms: pins needles/numbness started in my feet last summer maybe? Symptoms became persistent in September 2023, which is when I pushed my primary doctor for a neurology referral (prior he didn't take my symptoms seriously). Since then I'll have times when I think they've gotten better- sometimes it's only in one foot. The past few days, I feel like it's gotten worse which has been a bit scary honestly.

Also, please share your experience with IVIG or anything you think I should know before my first treatment. I know very little about it and I've been trying to educate myself.

​

Thank you!

I was diagnosed with gbs in 2021 and spent almost 7 months between hospitals and rehab, the thing is i dont remember anything before that, i remember my family and friends ofc but i font remember who i was and feel like im having to build a new personality because i just do not remember who i used to be or how i acted around people, i also do not like my friends anymore because i dont have any memories with them and font feel attached to them anymore because of that.

Anyone went through something similar??

Hi all! I am now with an employer who does not offer health insurance and kind of freaked out about it. Who here doesn’t have insurance but found ways to help cover medicine, doctors visits, etc?? I’m afraid of it I have a relapse and end back up in the hospital, I’m screwed.

Hi Everyone,

I’m about 8 months since my nadir and I had a fairly quick recovery.

I was able to walk independently by two months and my crampy pains went away.

I have small residual sensory deficits and some mild chronic fatigue. I haven’t appreciated a change in a couple months and I’m happy with this as my new normal.

I wondered when others stopped noticing improvements?

Hi!

I want to know if anyone has any stories of recovery or improvement after paralysis from ascending weakness and atrophy.

Backstory: my mom started having weakness and pain in her leg in august of last year, now shes paralysed waist down, and her back has also deteriorated, as in she cannot sit up straight. The doctor denied Dropped Head Syndrome and just stated her axial muscles are weakening. She has a pending diagnosis of CIDP however, no bloodtests show any anti bodies, plus her MRI showed no inflammation of nerves (Notably shes been on and off high dosages of steroids since october and she had received IV steroids 2 days before her MRI)

we spent months trying to treat her worsening condition as a nerve entrapment or related to her spine but finally we went to a neurologist who is familiar with neurological diseases in February and he speculated it was either MND or atypical CIDP.

She has begun IVIG treatments after her feeble response to steroids, like the entire list of side effects, I may even say it worsened her.

Anyway, she's bedridden, needs assistance sitting up, going to the bathroom etc cannot stand up at all. Atrophy in both legs since she hasn't walked since January.

Her first treatment response was just a general increase in energy, and her appetite was recovering a bit. She had fewer tremors in her upper body and her fingers stopped getting "stuck," but no improvement in terms of her legs except for 2 days during her second week post-treatment. 3rd week she declined, rapidly?

She just received her second dose today which was half of her first loading dose.

Has anyone recovered from such a state? Btw, no LP or nerve biopsy has been done, our neurologist is relying on her response to IVIG to confirm diagnosis.

I just want to know is her response to IVIG is an actual sign of improvement. I've read stories of people walking hours later but she also has atrophy from disuse.

Furthermore, shes developed burning nerve sensations in her legs after the treatment.

It is not GBS as it has slowly ascended over 8 months from minor instability in gait in one foot.

The doctor says its 60/40 if we're thinking of whether is CIDP (or similar disease) vs. MND.

would her initial response be considered clinical improvement?

Does anyone use one of these? Looking for something better than the trash mouse I'm using. These things look goofy and I can't tell if I'd like it or not.

Currently in hospital with tingling, altered sensation in skin. Mainly in legs, hand, arms but also have a tingly tongue and face. Had this for 11 days now. I wouldn’t say it was symmetrical all the time, but can be.

No muscle weakness. Passed the reflex test.

MRI of head and spine is clear.

Waiting to see the neurologist list tomorrow for a plan and hopefully more tests. They are not sure what it is but my gp mentioned Gillian barre syndrome!

Hello,

Mid 30s female who has had progressively worsening symptoms since a flu-like illness in February (had Covid for the first time in January as well). Symptoms initially started off as struggling to complete workouts with my running group due to feeling very weak and tired. Progressed to difficulty walking which led to a 6 day hospitalization mid March where nothing was found and told to followup outpatient for testing with specialists. Another overnight hospitalization - GBS mentioned by an ER doctor but the hospitalist NP told me I wasn’t sick enough for that. Seen by 3 different neuromuscular specialists (I sought different opinions) who felt my symptoms somewhat aligned with a neuromuscular junction disorder, either myasthenia gravis or Lambert Eaton myasthenic syndrome.

About 2.5 weeks ago, I started having difficulty breathing due to my diaphragm feeling like it was too weak to draw a good breath. Went to the ER a week and a half ago because of this and ended up briefly intubated due to acute respiratory failure. NIF was -20 when the ER doctor chose to intubate. In the ICU after I was extubated, I was still struggling to breathe and NIF was as low as -8 but nothing was done about it.

Spent a week in the hospital between neuro ICU and the step down unit. Still undiagnosed; differential is currently neuromuscular junction disorder vs post viral syndrome with an unusual presentation.

At an outpatient appointment and in the hospital, it was noted I was totally areflexic at every reflex checked. (Reflexes haven’t been checked since.)

Other symptoms include:

• difficulty breathing due to sensation of chest muscle weakness
• reduced sensation all over body, left side worse than right. I can barely feel my left foot and my PT noticed it turns in and I drag it (she was surprised I can walk at all when I told her I can barely feel it)
• pins and needles in fingers. I do have previously diagnosed carpal tunnel but the pins and needles are also in my ring and pinky fingers, which are not affected by carpal tunnel
• new onset sleep apnea symptoms, although this could be from my nose being blocked due to allergies
• increased headaches
• drooping left eye and blurry (sometimes double) vision
• hoarse voice

This was difficult to type because I can barely feel my fingers. I am naturally clumsy but the clumsiness has gotten worse due to the decreased sensation all over my body.

I know I have a myriad of symptoms that don’t really line up with anything. I appreciate your help in this!

I was diagnosed with GBS back in apr 2021, almost back to normal but i still have nerve pain around my shoulders and lower back, the pain also moves and sometimes could reach my arms, does it ever go away?

I am a f(21) and I got diagnosed with GBS on Feb 14, 2021. And when I came out of the hospital Aug, 2021, I came home and stayed with my two sisters and dad. My dad left our state dec of 2021 so I was just left at home with both of my sisters and this illness that was not getting any better.

It took me TWO YEARS to finally get rehabilitation and try to walk again and at the end of my rehab stay I was finally able to stand up and take some steps. In march this year I went back into rehab and started walking with the walker for longer distances. I came back home the last week of March and have been getting home health physical therapy and it’s been great, I can now use the bathroom and not the bedside commode because of the PT, however I ALWAYS am told by my physical therapist that I NEED to walk around the house more to get better 

but when I told her I don’t really feel comfortable walking around my 13 and 24 year old sisters and our 21 year old roommate (who is my sister’s friend who I had NEVER met before she moved into my house). She was soooo mad at me and called me selfish. She said “Your sister does EVERYTHING for you two and you can’t make her life easier!”. And like what am I supposed to say to that… I’m sorry I don’t feel comfortable around these grown women that don’t even try to help me progress. Because THAT shows me that they don’t really care that I get better.

And it’s always the SAME EXCUSE “I don’t do anything/help her walk unless she asks me to” LIKE HUH??! WOULDN’T YOU JUST SEE ME AND WANT TO HELP ME GET BETTER.. WHY DO I HAVE TO ASK YOU

It all started with the usual numbness and tingling before paralysis of my extremities and facial when I had it for the first time around the 2nd week of February. The onset was about a week-10 days before I collapsed at work. I couldn’t walk anymore and my vision was super blurry with a slurred speech. was admitted in the hospital for about 2 weeks during which I was administered IVIG. I moved into therapy and slowly started improvements(started walking with a walker. Towards the second week of therapy I slowly started regressing and complete paralysis took over my lower extremities again and this time around I couldn’t see anything in the distance. I started 5 rounds of plasmapheresis and by the 4th round I could take little steps without even a walker. At the end of plasmapheresis, I moved back to rehab and by the end of the week(7 weeks from first symptom) I was able to walk unassisted and climb stairs. But towards the end of the second week of my rehab, I started noticing that I was slowly starting to struggle with my walks and climbing up the stairs was getting harder. I was discharged and I went home. I was home for a week before relapsing again. Paralysis of my lower extremities and I lost my voice this time around and was short of breath( oxygen levels and dropped). Round two of plasmapheresis and I’ve been put on prednisone and immunosuppressants. And 10 weeks from seeing my first symptom to 3 relapses and complete paralysis later, I jogged my first mile yesterday.

To all my fellow GBS/CIDP survivors out there that are struggling and looking for hope, I want you to know that it is completely reversible and with the right treatment and time, it gets better. Do not ever lose hope.

Feel free to reach out to me anytime with questions or if you need anything at all.