Recommended video to all Guillain Barre and CIDP sufferers ! The best medical presentation on this strange auto-immune condition. Dr. Gorson clearly and thoroughly details treatment strategies, side effects, outcomes, risks, etc. Having experienced the severity of CIDP myself, I found everything he said commensurate with my own experience.

I am a lot like AJ been fighting this for 11 years. All the meds and living with constant pain has been really tough. My wife of 22 years left me and I wanted to just give up. I received the disease when I was in the military. I am on full disability and I am blessed for that. I have remarried and have a supporting wife. My sons and family keep me going. Build model and play with my guitar to keep my mind active. I totally understand what all you guys are going through. We have to remain positive and relize some day the pain will be gone and be in a better place. Roy

The most helpful insights of anything I have been able to find, tremendous gratitude thank you. I have extreme CDIP, which has been undiagnosed for six years, until a very recent EMG by a very experienced physician and his University research lab. (As a very healthy and vibrant athlete up until my gate changes and frequent falls arrived). I'd been told over and over that I was just getting "older" by my "small town" doctors. I have not received IVIG as of yet, although hopefully to be scheduled within the next week or so. I have received no explanations from current/only neurologist in town, which has been so very difficult to say the least, in numerous ways and your detailed information is extremely comforting. I'm praying that the Stanford Neuro Muscular dept accepts our request, in order to find a path to some regeneration to the current damage. Sincere gratitude, Tara

An excellent explanation! Great lecture and deeply appreciated. Explains so much!!!

Appreciate this information. I was diagnosed with GBS in 1999 leaving residuals. A month ago was diagnosed with CDIP and now I find myself so frightened that doctors just don't know enough to care for patients adequately. This video helped me to understand an active period of weakness.

Absolutely excellent teacher and incredibly clear and concise with your explanations. Thank you very much Dr. Kenneth Gorson.

This is a great explanation!! I have all this and can't even sleep at night due to the foot burning, pain, numbness. this has worked it way up my legs and also has affected my arms, hands and fingers. I have mastocytosis. Mast cells are inflammatory cells and they lay on or next to all the nerves in our bodies but mine or defective. They degranulate spilling out over 200 harmful chemicals and tear off the myelin sheath. My question to Dr. Groson is: Have you ever seen a case of CIDP caused by defective mast cells in a patient with a mast cell disease? Thank you for this great info!! Passing it on to my drs!

This was enormously helpful for me. Thank you

I'm late getting to the table because of mis-diagnosis for 3 years. No surprise, for the reasons that you talked about in your lecture. This was excellent for me because the explanations were clear and straight forward and with many illustrations. Thanks greatly!

Very well informed. I was just diagnosed 2 days ago. Thanks

Great explanations! Having CIDP for 13 years, I never got a to know what this disease was about. Living in pain, not getting the proper treatment. This is an eye opener! I didn't know treatment should be every 4 to 6 weeks. I'm on Lyrica and that is all and it does nothing! I can't take steroids because of blood pressure. Time to set an appointment with the foundation!

Very informative - you described my symptoms completely. It was so good to be able to understand my decease.

So informative. Thank you for sharing your wisdom with honesty and compassion!!!

47 Year old male diagnosed two years ago with Lupus (SLE) dsDNA+ and PsA (psoriatic arthritis) with only small patches of rash behind knee, RA+, But, I’ve had peripheral Neuropathy x 4 years. Now seeing a Neurologist who says I might have CIDP. I had an EMG two years ago with moderate PN showing both small and large fiber neuropathy. I think I may have had CIDP even then. I’m scheduled for another EMG next week to work up for CIDP. Also, two years ago, when the lupus was discovered and they threw up their hands and said “Oh its autoimmune and you have to see a Rheumatologist”. I had a lumbar puncture Feb 2016 that was normal other than slightly high protein and an abnormal protein band (oligoclonal protein). I understand this is evidence of an autoimmune process. I had a bad experience and needed a blood patch. That was horrifying because they had the needle in my back and nobody could draw the blood. The doctor had to ask someone to hold the needle in my back as he walked around the table and drew my blood from an artery. So, if the Neurologist tells me that we need to repeat the LP after the EMG next week, I don’t know what to do.

My Neurologist diagnosed me with CIDP in 2/24 but I also had/have tingling in my nose and ear canals. During my flare up I also had it on the roof of my mouth and tongue. He said that's not a symptom of CIDP. So I'm confused! Mis-diagnosis???

My husband was diagnosed with this a month ago. I thought he was going to die. He wasn't able to breathe on his own he had to get a trach, a peg, and his brain function is different. He is still unable to walk, move his legs and arms. I think Alcohol neuropathy the why... It's been two months now...

This is a fine overview of a somewhat obscure but serious disorder.

I was diagnosed with GBS, and as soon I could I started doing my own research since I was told very little at the time of diagnoses, and I've always thought I actually have cidp, I waited about 8 weeks before going to the hospital, I'm a little over a year out and I'm about to have my third round of ivig, I'm waiting on plasma exchange, but none of my internal organs were affected, I did not have to be incubated, started out with pain in my feet, my balance is still off, lots of tingly feet, weakness, lightening bolt pain feelings in my feet. I also JUST found out I have hashimotos as well, which at the time of my GBS diagnoses my hypothyroidism was untreated and out of control, but no one ever thought to test my anti-TPO antibodies until my obgyn ordered a test last week. So unless my undiagnosed hashimotos is effecting my GBS recovery, after watching this video I'm more convinced then ever that I have CIDP

precise, clear and quite helpful.

you should do more neurology videos. Excellant explanation

thank you so much for this video. so informative and helpful!

Very informative lecture!

this doc seem to be honest I like

thank God for this Doc Informatioon im in The mist of flare up. can hardly type thios one finger rt now vmy hANDS SHAKE , HELPS ME R4EALIZE IM NOT ALONE V

Can you speak about Multifocal acquired demyelinating sensory and motor neuropathy . My boyfriend has it.

awesome talk..would like to know how CIDP and genetic/hereditary conditions work out with Ivig therapy and other treatments, are these treatments applicable to a hereditary demyelinating neuropathy?

Do you het bad muscle pain in the legs and to a lesser extent the arms.? They think I have SFN. I have very bad inflammation in my muscles...they are sore and weak.

I was diagnosed with Demylenating sensorimotor neuropathy in 2017. Is this same as Cipd?

does anyone have info. on cipd with early onset parkinsons research? mainly the severe damage to psychomotor functions?

Thanks

does cidp affects autonomic nervous system?

If anybody still reads these comments: get tested by cyrex labs for gluten sensitivity and cross reactive foods, then get on that diet for a year. Change a potential cause instead of just treating the autoimmune reaction. I'm 4 months in and the pain is noticeably decreased.

I was diagnosed at cleveland clinic of a rare form of cidp, called cisp, found in the 1980's. over a year and a half of when the problem happend and still no treatment. Hopefully, soon. Will my hands and arms come back. So depressed with this.

I'm despaired !!! What can I do more ? I was diagnosed having CIDP back in 2005.....I was having problems such as always very tired after doing work,and I loved to work in my garden,but after been working hard,had to stay in bed for 2 days ! One night I woke up crying from the pain in my right arm,couldn't even move it,couldn't pick up a glas of water.....time went by,my housedoctor said,you are doing too much and so on...I was 56 years at that time! But now that I couldn't use my arm anymore,I look accidentely in the mirror by taking a towel....what did I see? My right shouder wings came outwards and upwards,yes I know it's a strange story.....called my housedoctor again,and showed him what my shoulderwing did,it was a move like shaking someones hand.....he was panicking and send me to a neurologist......after many examinations,also a spinal tab,the diagnose was CIDP ! I was attacked in both arms,couldn't carry things,strange enough,I still had strenght below my waist,not higher !Legs were involved too,but didn't had much problems that time ! I remember my neurologist asking,how long are your reflextions gone,as I didn't have them,not in my arms,not in my legs,they were all gone !!!! I said,doctor I'm not the one who should measure them,so I don't know ?? I first got on cortistroides now almost 12 years later I'm still very bad,can't walk anymore,only a few steps,having pain all the time......and I had IVIG for over 11 years,not every 3 weeks like this doctor says,it was every 4 weeks on a low dose ! End of 2009 I woke up crying again,now I couldn't step,my ex friend put me in a wheelchair and drove me to the hospital,I stayed 10 days,got IVIG,steriodes and chemo called Endoxan,this helped me to come out of the wheelchair,but the strengh never came back !! So at times when my conditions got back,I now and than got the chemo again,for a period of 3 months in a row.And I got better ! But my friend left me because I couldn't do much ! Almost 3 years ago,our government set a new low,now we had to go to an universitary hospital to get the approval for the IVIG.....I got mine as some axons were involved.....I had a test there.....and from than on,it only got worse....my neurologist called me by phone and said,I can no longer help you,as I'm not allowed to do any test,as you will be tested in that universitary clinic,I only had an EMG there,those doctors don't have the time,told me I should stay with my own neurologist,told them,he doesn't want to treat me because the only thing he was allowed to do,was making a prescription for the clinic for the IVIG ! I had to search for another neurologist,did found one,but to me she has no experience with CIDP.....she has only 2 patients ! The past months my feet get so swollen,and since I think 2 months I,ve dark spots arround and under the ankle.....I got more IVIG since 5 months,and I wonder,does this cause the swollen feet ?? I also should probably have diabetic,I never before had this......has anyone a story like this ??? Would like to know ? And because I don't live in the USA I can't get to the doctor there,I live in Europe in a small country with the name Belgium !Please if anyone thinks he/she can give me information,to help me out of this,let me know ?As I'm ready to give all up !

I wish i could find a doctor who at least tries to have a clue. The neurologist i went to in west virginia did not even test my reflexes or do romberg. Lol.