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.
@GoldenK9Campers Жыл бұрын
I think this is the best video by far on CIDP. Have watched it multiple times.
@outfield19888 жыл бұрын
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
@florabraswell-nm1re7 ай бұрын
Ioiiii
@TEPO--Ай бұрын
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
@jmocoverband9 жыл бұрын
An excellent explanation! Great lecture and deeply appreciated. Explains so much!!!
@sbn49ajc986 жыл бұрын
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.
@nathannyquist72085 жыл бұрын
Absolutely excellent teacher and incredibly clear and concise with your explanations. Thank you very much Dr. Kenneth Gorson.
@ajbarnett93459 жыл бұрын
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!
@SaraMarion-q6oАй бұрын
This was enormously helpful for me. Thank you
@billywilliams1545 жыл бұрын
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!
@cynthiarice51475 жыл бұрын
Very well informed. I was just diagnosed 2 days ago. Thanks
@laurameyerski92036 жыл бұрын
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!
@73kristilee3 жыл бұрын
Same, was prescribed Celebrex and bruffen for over 20 years for chronic lower back they did so much damage so I avoid ibuprofen. Intermittent sciatica for decades they got me on Lyrica which I hated the way it made me feel & eventually stopped working so I refused that & got had a spinal cortisol injection and was pain free for over a year. It came back a while ago so I tried Lyrica again & as soon as I did broke out in boils my skin just gets so toxic to it and Prednisone is the same. I have had chronic sinusitis since childhood, 3 surgeries need another, back to back incredibly painful sinus infections for 3 - 6 months forcing me to take antibiotics and steroids & it MESSES me up, skin boils, thick white tongue cracked and bleeding and gut microbiome so out of balance but it takes years from referral to see any specialist in the public system so I deal with crippling pain until I can't take it and need meds for little or no relief. But the weakness fatigue tingling feet and hands and ankle weakness and no grip unable to wash my hair it's all been that exact slow descend for about a year now. I also have severe tinntius had it for 5 years now, also relentless back of skull and side of neck pain for nearly a year. I'm a total mess to be honest. The tinntius is the killer though no one can give me answers or treatment every specialist I've seen says the same thing they don't fully understand why people get it and there's no cure, at all, ever. Just live with it. It's so unbelievably loud and debilitating. I've asked is it ear damage brain damage nerve damage eustachian tube fullness from my sinuses or hereditary as my nan and 2 aunties have it and they just say they don't know. I've pleased well can we even TRY to narrow it down to possibly 2/5 and treat them and see what happens they say they can't and I need to see a psychologist as it shouldn't bother me so much by now. So I play a KZfaq video of 9000hz which is around my frequency and turn it up to my noise level and place it on their desk and refuse to turn it off when they ask me to. Could my tinntius be from CIPD? How can it be so unknown and untreatable still?
@tonyp708175 жыл бұрын
Very informative - you described my symptoms completely. It was so good to be able to understand my decease.
@ahmadhammami21135 жыл бұрын
Like me 🌹
@notforthebirds7 жыл бұрын
So informative. Thank you for sharing your wisdom with honesty and compassion!!!
@graciedarnell17196 жыл бұрын
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.
@graciedarnell17196 жыл бұрын
I guess my daughter is signed in to you tube, but I am the one reporting this. My feet hurt all the time. I have fallen three times in the past year. I’ve been told that my pituitary failure ten years ago was probably autoimmune hypophysitis and I was never diagnosed then. I have also fallen asleep standing up and at stop lights (autoimmune narcolepsy). I take Provigil five days a week and it has helped a lot. I am not able to multi task anymore. I drop my pills constantly. My handwriting is almost illegible even for me. My weakness is pronounced and my fatigue is horrible. I hurt so badly at night and have for 4-5 years. My feet feel numb yet hurt terribly bad. Sometimes it feels like someone jamming nails in my toes and other times it is electric shocks that make me jump and wake up my wife even. Sometimes it’s like a hot coal being touched to my toes/feet. Then in the AM, I can barely walk to the shower. It hurts to walk barefoot at all and is intolerable.
@shellyb45820 күн бұрын
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???
@divinelydeedeeАй бұрын
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...
@decoraction5 жыл бұрын
This is a fine overview of a somewhat obscure but serious disorder.
@justinmartin2202 жыл бұрын
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
@raymondp.burgos52642 жыл бұрын
precise, clear and quite helpful.
@pavelboico92832 жыл бұрын
you should do more neurology videos. Excellant explanation
@easy58boi9 жыл бұрын
thank you so much for this video. so informative and helpful!
@vanessasmith3312 жыл бұрын
Very informative lecture!
@luisfernando-mm3jt8 жыл бұрын
this doc seem to be honest I like
@joannemiles19045 жыл бұрын
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
@theresasmith15 жыл бұрын
Can you speak about Multifocal acquired demyelinating sensory and motor neuropathy . My boyfriend has it.
@wpattersonII9 жыл бұрын
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?
@lysiss17 жыл бұрын
unfortunately not:( they have no effectiveness on the hereditary d.n ..ex: charcot marie tooth
@DONALD19515 жыл бұрын
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.
@cherylwood12035 жыл бұрын
I was diagnosed with Demylenating sensorimotor neuropathy in 2017. Is this same as Cipd?
@prissynonee19998 жыл бұрын
does anyone have info. on cipd with early onset parkinsons research? mainly the severe damage to psychomotor functions?
@gamaltaher97143 жыл бұрын
Thanks
@Weesson4 жыл бұрын
does cidp affects autonomic nervous system?
@markstreich27094 жыл бұрын
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.
@donnarichey1448 жыл бұрын
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.
@malanebrandenburger95188 жыл бұрын
+Donna Richey I was sent to a specialist and he was a real jerk. Did the emg test and told me I had peripheral neuropathy and to come back in 3 months, because it will heal itself. Yeah Right! I was in a wheel chair by then, from walking with no appliences .Read a book during the first EMG test. The phone nurse never put it in my primary doctors notes to refer me to where I wanted to go. Was in there in 3 weeks. Sanford Brain and Spinal Center. Fargo, ND. He did tons of blood tests, spinal tap, and another EMG test. This time I was curled up in a ball tears running down my face and in excruciating pain. Went back a week later and he informed me it was CIDP. That was in the early fall 2012. My treatment is a big IVIG bag of ...privegin(infusion) 20,000 people's anti bodies because the anti bodies are destroyed by the CIDP. So the CIDP it starts attacking one's body eating up the nerve sheath, nerves and muscles, atrophy. I also take calcium/Vit. D and a B complex supplements. I have went from a wheel chair I had to be helped in and out to a walker then a cane. As of spring of 2015 the cane went in the closet. Now I only use walking sticks when I go walking. I had been riding bike and running 4 1/2 miles a day before my legs were getting rubbery. You will not notice right away any changes. It takes 3-4 treatments. I took treatments, infusions, every 3 weeks and have just now gone to once a month. It can go into remission or plateau . It's been a long journey and it will be a long journey ahead. , So I guess treatments for life, as there is no cure, are what I have to do. I take treatments at the Roger Maris Cancer Center. I keep looking for a cure or different treatment. It will take time for progressing to the better. It effected my legs, feet, arms, hands & fingers. It does effect the internal organs. It did my bladder, and lungs. Better now from infusions. I an an artist, cake baker-decorater, crafter, painter, photographer, gardener. I keep busy to keep things working. Oh I have pain. A lot of pain. Pain meds do help. Just enough to knock the pain enough to be able to work. People tell me I push myself too hard. If one doesn't push themselves a bit there will be no progressing. The doctor said if I didn't have infusions it will effect the organs and then one will die. Don't give up. Talk to your specialist about the IVIG treatment. Sorry for going on and on. I just hate to hear of or see people in pain. I lived in bed for months in pain. I had never cried so much in my whole life. MRIs, X-rays, cat scans of course never showed any damage. The IVIG is worth a try.
@donnarichey1448 жыл бұрын
Thank you so much, seeing you have made some progress, makes me feel a little better, I am getting depressed and can't take it anymore. I haven't see any progress with the ivig, go back to the neurologist in June, I just figured at least I don't get worse doing it. Once in a while I have trouble swallowing and it scares me. I figured it affects organs too, thank you so much. I was going to get those walking things at walmart to see if they help. I keep putting on weight, because I walk like I have a muscle disease legs and arms weigh a ton. I appreciate you making me feel that there is some hope for me, keep in touch and thank you so much Donna
@malanebrandenburger95188 жыл бұрын
+Donna Richey I don't eat meat anymore because of a hard time swallowing. It has to have gravy, sweet & sour sauce, even butter to have it very moist. Anything dry I have no swallow reflex. Keep trying, there is always a different treatment. And when you something that works, keep doing it and you will see a progression. It is slow. It will be a few treatments to see it. I have learned to have patience. Sometimes is very hard. A second opinion doesn't hurt either. Keep in touch. I
@donnarichey1448 жыл бұрын
+Malane Brandenburger Thanks for answering, I think it helps when talking to someone going through the same thing. I just get frustrated, I used to be able to cut grass and plant and walk my dogs, now I can hardly walk, I am so stiff around the middle it drives me crazy. Simple things cleaning yourself when going to the bathroom, you can;t bend. Just get so worn out, my husband keeps saying you are doing better, but he doesn't understand how I feel. I think waiting so long for treatment, its not going to get better. Take care and thank you
@malanebrandenburger95188 жыл бұрын
+Donna Richey My husband tells everyone I am doing better, too. I told him that I really don't say much anymore to him. If he wants to tell people something tell them that I am fine. He was telling someone on the phone one night that Yeah she's really doing great. I looked at him and said. How do you know and feel how I am doing? No one knows how I am truly doing. I have learned to put on a smile and ignore how I am doing around people in a crowd. I told him to quit telling people all the extra procedures I have to have done, including our kids. When I was super sick my children ALL disapeared. So if they don't care they don't need to know. No help with anything. If it wasn't for some super people who have become our best friends wowed have not gotten through most of this journey. They didn't want anything to do with me. I now have to have cataract surgery on my right eye. The left eye I have to have an injection for swelling of the macular. Then cataract surgery on that eye, too. You need to get treatment started as so as possible. Find a different specialist for second opinions. If not this non reversable ,non curable disease will attack organs and your body will shut down and one will die from it.
@simonez69947 жыл бұрын
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 !
@dr.ajithdavidthampi97915 жыл бұрын
How are you
@alansutton9388 Жыл бұрын
I feel for you
@simonez6994 Жыл бұрын
@@alansutton9388 Thank you very much
@simonez6994 Жыл бұрын
@@dr.ajithdavidthampi9791 It only gets worse by the years .
@simonez6994 Жыл бұрын
Sorry,I haven´t seen these comments, so I answer them now,thanks !
@corniss4 жыл бұрын
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.