Symptoms, diagnosis, and treatment of CIDP

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Questions about CIDP? Or perhaps you'd like to request more information? You’re in the right place. Please connect with us below, and a GBS|CIDP Foundation International representative will get back to you within 48 hours:
www.gbs-cidp.org/about/contac...
For more information: www.gbs-cidp.org/

Опубликовано:

5 окт 2014

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Комментарии : 129

@sofianehra5193 3 года назад

I'm 45 yrs old...was diagnosed in 2018...and from being on a wheelchair to...now be able to walk 10000 steps...seems a long journey...it is a terrible disease...but ur will power...matters the most stay positive...stay happy ❤️❤️

@dukstedi 2 года назад

gotta stay happy. this crap has taken alot away from me. thank god for ivig infusion i finally got out of the wheelchair. i can walk again after 2yrs. i still have to have an infusion every 3weeks. still its better than that confounded chair!!!!❤️

@jamiefox1045 2 года назад

Hi Sophia, I’m 48 and developed CIDP last year at this time, immunoglobulin treatment has been effective for me but only people who have our condition can understand all the struggles we are going through

@samkitty5894 11 месяцев назад

What was the treatment? What medication? Do tell...

@sofianehra5193 11 месяцев назад

@@samkitty5894 It's yoga ...which helped me..have been sharing on many platforms but people seems to b not able to believe it but it is one of the easiest and the mist effective treatment that too has no side effects then why not give it a try♥️♥️

@maniebenjamin2869 5 лет назад

I have cdip and I’m 13 but I’m able to play in an elite junior high basketball program after 2 months now im a able to run and jump

@jsaravia24 3 года назад

My wife was just diagnosed with CIDP yesterday. Thank you for posting this video, this really helps.

@marcmckenzie5110 Год назад

For the past five years I’ve had an ever more disabling and isolating polyneuropathy, among several forms of neural problems following non-Hodgins lymphoma and stem-cell transplant (and a host of sequelae). I just got diagnosed with CIDP, which is a ray of hope in the mounting darkness. Don’t know yet if I’ll be treated with IVIG, but I’m hopeful. This story gave me a little hope.

@sampatk4948 Год назад

How are you doing now ? Is IVIG helping you ?

@marcmckenzie5110 Год назад

@@sampatk4948 Well, I spent the next five months seeing six different neurologists (sub-specialists) for many batteries of tests and consultations. They reversed their findings and I don’t have CIDP. I have brain damage from radiation given in cancer treatments, nerve degeneration in my lower hands and legs probably from chemo and full body radiation, and finally advanced poly-radicular neuropathy every where else. Oh, and a benign brain tumor we’re monitoring. So I’m at a point where there are no treatments, so it’s just palliative care which is mostly pain management. I’m now just focusing on being peaceful and try to live the best I can each day. Hoping you are not dealing with nerve disease 🙏🏻🌿

@thecalhounfamily2196 3 года назад

OMG thank you for this video. This is exactly what my husband has been diagnosed with

@michaelrichmond408 Год назад

I have CIDP, I’m 25 years old, never even heard of it until I was diagnosed. I’m using ivig and my symptoms have gone away ❤

@kadriyeaktas3094 10 месяцев назад

Hello, how are you now? What is the status of your illness? Can you please inform me? My 4-year-old daughter has the same problem. We are taking ivig.

@pilarflorenz8470 2 года назад

Thank you so much for sharing your story!

@SteveHsFavorites Год назад

0:48 My CIPD took 21/2 years to find out what I had! My disease progression was speeding up this year. So I have CIPD so long with out treatment and now my legs can no longer use them! They rush after the diagnosis using IVIg infusion. I am now in a power chair and need extensive help. So this disorder not everyone turns out the same! God bless the ones that are not doing badly!

@kirkdecker6228 Год назад

I feel your pain. I've been battling a rare variant of CIDP called MADSAM, which doesnt usually respond to IG treatment very well. Was finally diagnosed at the end of 2016. Its not getting any better. Very difficult to stand and walk and upper body is being affected now. I hope things get better for you soon.

@beverlycarolina1222 8 лет назад

Thank you!

@sbn49ajc98 6 лет назад

Thank you, fear is universal. In 1999 I had GBS and last month almost 19 years later received CIDP diagnosis. I find myself once again with fear having skeptical trust in doctors to treat me.

@sbn49ajc98 6 лет назад

pradeep kumar You know the saying "I will try almost anything"? Well, thank you for the source to check out.

@annettenetta9150 5 лет назад

Your story is my story I’m a plasmapheresis patient and it helps me not to feel sickly I do know CIDP is a relapsing form of GBS I also have a Lumboperitoneal shunt. wonder if you or anyone has been shunted? Thank you for sharing

@aboodahmed5161 5 лет назад

@@sbn49ajc98 is that real resource

@sbn49ajc98 5 лет назад

@@annettenetta9150 Just seeing your post. Did you receive plasmapheteses right after diagnosis or later? I'm on IVIg infusion every 4 weeks at this point. But wondering down the road when/if the plasma exchange is in my cards. GBS in 1999, CIDP in Sept 2017. Thank you for posting!

@annettenetta9150 5 лет назад

SBn49 AJC much later and it has helped moreover IVIG amazing👍🏼

@marlenalavaka2575 6 лет назад

Thanks you just made my day

@toys2cars 4 года назад

I had GBS 10 years ago. After one heavy dose of ivig I slowly made a full recovery. About 6 weeks ago I suddenly got numb hands and feet, after having had the flu (not just a cold). After a couple of weeks it spread up my legs and I immediately was given 5 days of ivig. Now I have to have ivig every 4weeks. Turns out my GBS was Cidp and I hadn't made a full recovery these past 10 years but just had been in remission.

@dukstedi 2 года назад

ty for putting info out about this. almost no one knows what CIDP is. thankfully, GBS garnered enough attention that my doc suggested i getta LP (ive had 3now) and i gotta tell ya that needle gets all the way to your chakras!😅 he thought i had GBS but concluded finally that it was CIDP, which i mean seems like just a catch all term for these symptoms… im rambling. again ty for putting out more info!❤️

@zachmatt3 4 месяца назад

I was diagnosed with idiopathic peripheral neuropathy in the year 2000. I've been treated solely with gabapentin, which works well for the pain. But in the last few months, I've noticed that doors are harder to open, and items I pick up seem heavier, even a can of coke. I went to a new neurologist as a result of a move from my previous city, and he did a nerve conduction study as a matter of routine for a new patient. The results of the study, along with my clinical symptoms, led him to diagnose CIDP. I'm scheduled to start infusion therapy soon. Since my nerves have been experiencing damage for 24 years, I don't know whether I will improve or not. I was used to the pain, but getting used to being weak would be another thing.

@connorloertscher8584 5 месяцев назад

I'm 30 and just found this video I have Achilles lengthening because of this issue and IVIG I technically died during my last infusion BP 19/7 and I'm so glad to see that other people have dealt with this. I have never met anyone who just knows what this is without a lecture lol

@queenstatus3049 4 года назад

Thanks for providing hope.

@jnicophene 3 года назад

I developed CDIP at the age of 11.. luckily I'm able workout and run.. but my smaller muscles are weak

@crossyroad1 2 года назад

I went from normal function to full blown CIDP barely able to walk in 1 year

@kirkdecker6228 Год назад

After chasing around for over a year trying to find out why my body was rebelling, I finally went to the The Mayo Clinic and was diagnosed with M.A.D.S.A.M (multifocal acquired demyelinating sensory and motor polyradiculoneuropathy) a rare form of C.I.D.P. It was caused by a flu vaccine back in 2015. Diagnoses was made at the end of 2016. I've been on IVIG therapy since the beginning of 2017, along with high dose Solumedrol infusions. I now require IVIG infusions every other week. Losing motor skills in my legs and arms are starting to be affected as well. I'm now under the care of the University of Michigan hospital, but unfortunately, my neurologist who specialized in CIDP and MADSAM passed away late last year. My new neurologist doesn't seen to have the experience of my previous neurologist. Very very nervous. Early detection and treatment is the key here, especially in the rare variants of MADSAM (it slaos referred to as Lewis-Sumner Syndrome). Unfortunately, none of the neurologists and specialists in my home town believed me. It's very depressing and scary. The above vid is also depressing.

@callmeJAF 4 года назад

It's been 7 years now. I'm 16, been in remission for 2 years. They've taken me off my drugs... Starting to get tingling in my feet again. Oh well, was worth a shot.

@christybuckler460 4 года назад

This is an incurable, chronic disease. Relapse is unfortunately part of it. Some people have to get more treatments and some have to be constantly treated. Hang in there bud. Remember, this is an inflammatory response illness. So you may need to change your diet, test for food sensitivities which cause inflammation and I really recommend taking high dose turmeric supplement. My dr suggests 3000 mg daily. It is natural and incredibly effective at reducing inflammation! Talk to your dr about it. This may help you stay in remission longer.

@callmeJAF 4 года назад

@@christybuckler460 Hi, thanks for the response! Just thought I'd give an update, now a year later I just turned 17 and the tingling in the feet never progressed to anything worse and is now gone. Doctor doesn't seem too worried about any sensory changes, only motor. So he's discharging me if I don't show any symptoms in the next 9 months.

@richawoman 4 года назад

@@christybuckler460 Just don't take aspirin or any other blood thinner when taking tumeric as tumeric is a blood thinner.

@lyndasullivan9278 2 года назад

I start IVIG treatments tomorrow and a bit nervous. The co pay is over 3 k and they have not yet told me how often I need this. I pray it works

@flyingace1057 2 года назад

God is Good 🙏

@drbero7600 4 года назад

Really heart touching video Many thanks for those who made this video Iam doctor And finding such comforting informations Will give me hope Thanks

@dr.elvis.h.christ 4 года назад

After a long ordeal involving the gamut of the medical system I was ultimately sent to a neurologist and diagnosed with CIDP in July. It's ruined my life! Steroids have helped greatly but I still suffer from coordination problems, numbness, tingling and some random pains. Been waiting for IVIG but have yet to be treated due to the shortage.

@dr.elvis.h.christ 3 года назад

@Chumnley snoop B12 does nothing to prevent nerve damage.

@jamiefox1045 2 года назад

Hope you’re finally getting IVIG, this disease is terrible and people are not sympathetic in my experience

@dr.elvis.h.christ 2 года назад

@@jamiefox1045 Yes, been on it for about 2 years now. It helps.

@cornhulioreborn7678 Год назад

Ditto, all the best to the patient

@seityagunkhagokpam 2 месяца назад

Tell me how to cure cidp

@litjukebox Год назад

My wife has it and my heart cry everyday I see her, A healthy woman and now how she is,, there is nothing I can do..we have a 2 yr old daughter and my wife cannot play with her. she is just 32..I pray to God. I really don't know what to do., she recently lost hearing. Can I get some guidance how to get her back on her feet, it started since Dec 2020. Please help..

@kirkdecker6228 Год назад

Look up N.O.R.D. The National Organization for Rare diseases. They have a lot of resources. Your first step should be to find a Health Center for Excellence...like the Mayo Clinic, the Cleveland Clinic. Somewhere where they have seen these diseases and know how to treat them. Each case is different. Many treatment options, but please understand there is no 'cure' per se. If the demyelation isnt caught early and treated, the nerves axons will be permanently damaged. Good luck and I wish you the best.

@alexsanchez1995 9 месяцев назад

From what I’ve heard, IVIG treats it. I understand your pain man. My dad has had CIDP for 7 years now. I’m only 13, so almost every-time I see him I cry out too. My dad was Healthy too, had a slim stomach and some abs. 7 years later, physical therapy, medications, IVIG injections, and now just…out of shape…It’s crazy because nobody deserves this. I Pray for your Wife.

@sabrinastratton1991 2 года назад

I went to the ER after my legs went weak. And I was stuttering and couldn’t talk right. I’m sure I had symptoms before it just crashed. They sent me to a psychologist saying it was “conversion disorder”, the psychologist did her own neuro exam and saw how week my extremities were. This sounds just like what I’m experiencing but haven’t been diagnosed. I have weird convulsions but not actual seizures. I always have tingling and now I’m at the point where I can barely walk some days tho some days I’m good. I use a cane 60% of the time.

@AllIAm1 2 года назад

Omg that sounds just like my dad he’s in the hospital now after 18 fucking months of this shit! Finally a neurologist had a light bulb and they’re doing a lumbar puncture tomorrow . Did u get diagnosed and treated?

@tanyaleigh8796 Год назад

conversion disorder only lasts briefly if this is going on for months than it is something else.

@georgecassir 3 года назад

In God we Trust he will give us hope and will to vanquish these diseases with Dr’s that are trying To help

@josetitomarino860 8 лет назад

Muchas Gracias por esta información, creo le servirá a mi hermano, para una rapada recuperación, no perdemos las esperanzas que Dios nos ayudara.

@carmensantaella5116 2 года назад

Buenos días amigos, yo en lo particular yo he tenido está enfermedad casi por 25 anos he sufrido mucho pero sigo aquí gracias a Dios,tengo que salir en estos momentos luego sigo hablando hasta luego

@cheornelas377 Год назад

Hola

@sakurali6166 3 года назад

hi I'm 22y.o and i have a CIDP now what treatment best to do?

@gloriarader2987 3 года назад

I have one neurologist that says I don't meet the criteria for als and another that that thought I have CIDP then ran up a couple more test and said he THINKS I could have als. In May of 2018 I started walking with a limp then weakness and foot drop in left leg to now both legs weak and left arm???????

@meb8743 5 лет назад

How bad did she get? Did she get completely paralyzed?

@animaleyes4733 5 лет назад

And the treatments are......

@dagger6467 3 года назад

IVIG from what was said, I think.

@multitoolish 3 года назад

My 6yo has cidp and he's been on ivig for the last 2 to 3 years. He seemed to get better at first but now he's loosing strength in his hands and he can not move his feet at all. We're in a very rural area of TN and have to go to Nashville 1 time a month. Do you all know anything about stem cell therapy? What are your recommendations. We're at a loss and very scared. Thank you for any help.

@Binknew 3 года назад

I saw your post and just wanted to say,,,,I have been dealing with this myself,,,,and the prednisone helped some,,,, and also having my underactive thyroid treated with synthroid helped quite a bit,,,I tried the IVIG,,but after two treatments,,, I had an adverse reaction,,so my neurologist stopped that,,Hope you find some answers,🙏

@edledskal9147 2 года назад

I take Prednisone as well and without it IVIG was not enough. I would get a little better and then worse and repeat until I started taking Prednisone and slowly it started to work. I went from needing infusions ever 2 weeks to every 5 weeks now and even then I am not losing much strength as treatment approaches. Prednisone with IVIG works great. Prednisone is not great for you health for several reasons, but it's good a helping put the disease into remission. I hope your child is doing better. I would not wish CIDP on anyone, much less a child. IVIG had bad side effects at first but slowly they dwindled. Now I just get the occasional headache or photophobia for a day or two after treatment, but just sometimes. I have had infusions over the last 8 months.

@mariavergien8792 5 месяцев назад

Can strong chemo cause this to the nerves?

@neelkanth_shambhu Год назад

Can anyone explain that after being CIDP patient we will be able to run 🏃‍♂️ or jump or just gonna live a normal life?

@frankferguson8318 7 лет назад

Do micro voltages (sota , Quell,) to deactivate ability of mycoplasma to enter cell and duplicate via RT help? Is the time frame to stabilize 3 to 4 years? Propax Gold with NT factor? MMS?

@valeriedavis2330 2 года назад

She never said how she got rid of it ...treatment????

@rafaelariza1276 3 года назад

I have cidp last may 2020 until now but i cant afford for treatment of rehab theraphy

@raufjutt4708 3 года назад

Aap Kahan se ho mary baty ko Jo 16year ka ha 20din phly cidp ki bimari diagnos hoi ha aur hum bhi BHT pareshan hain hum lyari Karachi mn rahty hain aur dr ne ye hi btaya ha k is ka elaj waqai BHT mahnga ha bs Allah pr yaqeen ha wo hi shifa dany wala ha

@MarcelaVaiser-er6bz 8 месяцев назад

I'm 55 old, was diagnosed in 2019

@FOURTYFIVERS45 7 месяцев назад

How you doing now?

@robertgordonsr.5876 6 лет назад

I have CIDP coming up on year 2

@Subfightr 5 лет назад

How were you diagnosed?

@robledezma23 5 лет назад

So do i. How long have you had it?

@dr.elvis.h.christ 4 года назад

Just recently diagnosed in this July. Do they have you on IVIG?

@ernestworrell7447 3 года назад

Probably a completely random thing but I was diagnosed with CIDP at 14 years old. I had extreme leg muscle weakness and my legs would randomly give out and I would fall almost everyday. I refused IVIG treatment and decided to stop being a lab rat and completely stopped seeing the doctor and stopped all treatment and now at age 26 I show absolutely no signs and feel completely normal as if it was just a temporary issue that's resolved itself.

@TheSimplisticBeauty 3 года назад

What did you do to cure it?

@ernestworrell7447 3 года назад

@@TheSimplisticBeauty Literally nothing.

@dukstedi 2 года назад

@@TheSimplisticBeauty i think its cuz they were so young. i didnt catch it til i was 37. luckily i was in pretty good shape. still spent 2yrs in a wheelchair…

@margaretskinner6972 Год назад

My legs keep going completely numb up to my waist! The pain comes with it though excruciating painful burning pain up my legs to my waistline. If i dont find a seat quickly within seconds I collapse to the floor. It last about 5 mins. Each time this happens my legs just dont feel the same. Like a weaker version of myself each time.

@samkitty5894 11 месяцев назад

@@margaretskinner6972 I am experiencing the same thing. Been seeing doctors for the last 7 months. No diagnosis yet.

@georgecassir 3 года назад

I am diagnosed ALS But my other DR In my origin country told CIDP I’m not convinced I have ALS could you please help me

@gbscidporg 3 года назад

Hello! The foundation would be happy to offer our support. Please contact the office where we can better assist you. (610) 667-0131

@rishitjoshi1582 6 лет назад

My husband is suffering from cidp last 6 months is steroid is necessary for them

@aboodahmed5161 5 лет назад

And how is he now ? He still suffering

@cognitiun4064 4 года назад

Eu tenho essa doença desde os meus 13 anos de idade, hoje estou com 15 anos... No Brasil e PIDC polineuropatia inflamatória desmielinizante crônica

@davidhedley8394 5 лет назад

I have CIDP .I would love to know what this lady said. With the stupid music in the background I was only able to hear some of it.

@deblack47 5 лет назад

Turn on the captioning.

@Subfightr 5 лет назад

How were you diagnosed?

@dr.elvis.h.christ 4 года назад

Overproduction ruins everything.

@seityagunkhagokpam 2 месяца назад

How cure cipd

@sendyvides3776 2 года назад

Hello, my father was diagnosed last year, he is 62 years old. We visited approximately 2 neurologist, but none could find what was going on, till 10 months later the 3rd neurologist gave the answer. We live in Honduras, at first he was treated with steroids and didnt get any better, but worsed his symptoms. The IVG treatment is very difficult to get because in our country is mostly given to GBS patients.and I would like to know if the GBS-CIDP foundation could help us in any way.

@GutesJahr 3 года назад

Earum wird das nicht auf deutsch übersetzt???

@toe2328 7 месяцев назад

2024... This is the best capitalist commercial consumers can do. The future will be exactly like the movie 'Soylent Green'.

@nonamansour5619 4 года назад

I have cidp what medicine can help me

@christybuckler460 4 года назад

Are you under a dr’s care? They should be treating and guiding you on what medicine to take. Thing is, everyone responds differently. So what works for one may not work for you. IVIG did not work for me. Had to do plasmapheresis as well and think it may be helping. I’m newly diagnosed, just one month ago and have spent nearly half of that in the hospital. One thing I do know and highly recommend is talking to your dr about getting on a good quality, high dose turmeric supplement. This is an inflammatory response disease and turmeric is HIGHLY effective at reducing inflammation.

@nonamansour5619 4 года назад

@@christybuckler460 thank you

@zariyamitchell7959 6 лет назад

I'm 11 and I have cidp

@ashleynicole8041 5 лет назад

Zariya Mitchell I’m sorry. This pain is no fun for anyone

@catshomelife 3 года назад

I hope you are doing better these days!

@dkasper3267 Год назад

I'm so sorry!!

@knando283 6 лет назад

What is the best treatment and cure?

@dougwheeler1838 5 лет назад

IVIG has worked the best for me, I was diagnosed in 2011

@Subfightr 5 лет назад

@@dougwheeler1838 how were you diagnosed if I may? I can't get a Dr to even look at cidp, I feel like I'm trying to convince them that bigfoot and aliens exist :(

@dougwheeler1838 5 лет назад

@@Subfightr Ask for a nerve conduction test. It is an electrical shock but a very telling test. I wasn't even home when the Dr. called with a diagnosis of CIDP. Some signs for me were no reflexes at all, weak legs and arms with plenty of stinging of my limbs like they were always trying to wake up

@dr.elvis.h.christ 4 года назад

@@dougwheeler1838 I had nerve conduction first (very unpleasant!) which did indicate demyelination. It took a spinal tap to finally confirm CIDP.

@dougwheeler1838 4 года назад

@@dr.elvis.h.christ Did you start taking IVIG treatments? Do not settle for less, First I was put on Prednisone, Wow in big doses a ton of side effects. With the IVIG my body started waking up after the 3rd of 5 daily treatments

@riadghanma9954 Год назад

Symptoms, diagnosis, and treatment of CIDP, i saw nothing of that

@ironmanrockz463 3 года назад

No one knows.... Thats the hurting part😑

@riadghanma9954 Год назад

the background music is annoying

@jaigarg1364 Год назад

What is the best treatment for this disease I’m suffering for last 2 years

@kirkdecker6228 Год назад

There is no 'best' treatment. Everyone responds differently. IVIG is the most common. High dose steroids infusions (Solumedrol) which were quite nasty for me. Rituximab is also used. Plasmapheresis is worthless and require hospitalization. Please understand there is no cure. About 1/3 patients go into remission for reasons unknown, 1/3 get better with some sort of immunomodulation treatment, and about 1/3 get worse. Ive been battling a rare form of CIDP, called MADSAM for over 5 years now. I now require IVIG/Solumedrol infusions every other week. I would suggest you look up N.O.R.D, the National Organization for Rare diseases and find a health center for excellence and go there. Like the Mayo Clinic, Cleveland Clinic, etc. N.O.R.D has a list of great resources. Advocate for yourself...the majority of doctors have never dealt with this disease and may just try to brush you off. Good luck!!!!!!