Hi Darrell, I stumbled across your video. This is a very good description of the typical diagnostic process. (For me, nearly 19 years ago.) "Be your own best advocate" is great advice to anyone in the middle of these diagnostics. Not long after my nerve conduction test and a spinal tap, I could feel my walking was getting worse. I was able to get my neurologist on the phone and she said "OK, I've seen enough, I'm bringing you in for IVIG." My positive response to IVIG left no doubt that it was CIDP.
Thank you Darrell. Very informative. My experience mirrors yours to a point, but also differs in quite a big way. Firstly, my diagnosis is CIDP. First major symptoms started early Feb 2022 (legs pretty much stopped working). Local General Practice Doctors didn't have a clue and assumed that I might have a back problem. I saw an Osteopath and also a sports masseur for the next three months and, whilst they certainly helped me, it was never going to be a cure (which we didn't know at the time). My health rapidly deteriorated in May, to the point where I couldn't walk at all and was falling over. I was admitted in hospital on May 30th and was diagnosed with CIDP within a couple of days. I was to spend 5 of the following weeks in hospital (three separate stays). I had all of tests that you mention in the video, plus a great deal more - brain scan, heart scan, kidney biopsy. However, it was the lumbar puncture and specialised blood tests that really threw light on the situation. By 4th June I was totally paralysed. Then the miracles started happening :) First treatment was IVIG. My response was pretty miraculous - within two days of the infusion my body had returned to pre-condition health. I was able to walk unaided and, apart from quite a bit of muscle atrophy, I had almost all mobility back. Then came the downside..... the benefits from IVIG only lasted 5/6 days, at which point I returned back to paralysis (and had to enter hospital again). This happened three times. By the 3rd time, the special blood tests had come back showing that I had an extremely rare variant, with only 5 prior known cases. Luckily for me, there was a different treatment which has been a further miracle. So, on the 3rd time, I was again given IVIG (that means that I had had three doses in 4 weeks! which the doctors were a bit concerned about giving me so much....) which picked me up to pre-condition health. They then supported that level through high-dose steroids (60mg per day) gradually tapered off over 6 months. And, finally, the special stuff - I was given an infusion of Rituximab. This stops my body from producing the errant proteins that causes the CIDP by lowering my immune system. It works fantastically well. I haven't had any further IVIG infusions since then. Steroids have now finished. And, fingers crossed, my immune system should come back online in July/August - they think without the initial problem. I realise that I've been extremely fortunate with my recovery. It was not fun, at all, going through to paralysis (pain was really intense, too) but to be returned to pre-condition health has been just amazing. I set myself a challenge that from November 1st to April 30th I would complete 2600 miles on my spin bike, so as to help regain some of the muscle strength that I lost. I'm currently at 1950 miles! :)
Thanks for sharing.. Such an awesome story of recovery. They do say that one nice thing about steroids vs ivig.. is sometimes steroids work better for being able to get off of them without a relapse. My goal is for next Fall to do the Grand Canyon Rim to Rim hike in one day. Likelyi will do that in the early October timeframe. In april I will again to the rim to river hike. Keep it up !! Thanks so much for watching !!
I had a similar Dx as yours. Symptoms 1st started in Feb 2020, and progressively worsened until last week on May, where it excellerated from unassisted walking to paralyzed in a matter of 5days. Dx'ed GBS Jun 2020, but 6wks later, I was paralyzed again. Dx was then changed to CIDP. I now receive regular infusions of IG, 1g/Kg/21days. In fact, I get an infusion at 8:30a, Tuesday.
I hope you're doing better with the regular infusions. It's amazing how getting IVIG / Steroids / or PE postively affects our quality of life. I do wish more research could be done to better figure out what is causing our immune system to go crazy. Probably something really simple.. we can hope that someday they can figure this stupid disease out and we can all be cured.
Darrel, thank you so very much for creating this TH-cam Channel and Videos ! It’s extremely comforting to here both your story and your experiences with CIDP. Since your IVIG treatments began have you regained and/or noticed nerve repair and or regaining feeling in your lower legs, feet and toes ? My initial 4 day IVIG infusion was 3 weeks ago and I’m scheduled for my second round of Infusion tomorrow. I’m already feeling periodic relief in my symptoms. Honestly, I’m just thankful to still be walking and able to still go to the gym. The Neurologist that diagnosed me said I’ve had CIDP for several years. Apparently my CIDP would flare up and then go into remission for months at a time. I hope and pray you continue to progress and do well !
Hi Keith. Thanks so much for watching and commenting. The IVIG for me was a godsend. My situation was weird, as I had a combination of acute onset, plus I just kept getting worse and worse. At about 9 weeks into my symptoms is when I finally got IVIG, and I could feel a difference almost immediately. But it was a long haul to wear i could walk again without assistance. Now, i'm at the point where most people that see me would not thing anything is wrong. The only thing I can't do anymore, that I used to is play golf. That's because of my back issues, which I only started having after my symptoms began. Anyhow, i'm glad you got diagnosed and are getting treatment. Be thankful that you have a good neurologist, and how that you are getting treatment, the sky is the limit. I have nerve damage, but I continue to improve slowly but surely.
@@turtle.warriors your positive attitude is motivating and your progress in healing is inspiring. Sorry to hear you having to give up Golf but based on what I’ve seen from you I have now doubt that you’ll be back on the Golf Course someday soon. As the old timers say “God willing and the Creek don’t rise” 💪🏼.
Hi thank you for your video. I am in the UK and have been suffering for a year with numbness throughput my body. I have been given a prediagnosis of cidp and referred to another hospital for formal diagnosis. I recently needed a lumbar puncture and was admitted to hospital after with extreme post lumbar headaches. This was followed by severe pain and spasming in my right foot. I was left in pain for 2 days and difficulty with walking . No medic or neurologist came near me. A neurologist 2 days later came and just prescribed pregabalin and physio. I only received the pregabalin and then never saw anyone else other than ordinary doctors. Who had no advice or addressed the painful spasming other than to give me quinine. I have now been discharged with the drugs and spasming which happens every 3-4mins. I'm still awaiting my next appointment with neurologist 🤷♀️
This is so awful. It sounds like maybe during the lumbar puncture they may have hit a nerve which is acting up and causing the spasms. Hang in there. Nerves do tend to heal themselves. I'm taking both Gabappentin and Cymbalta for nerve pain and they do help.
@@turtle.warriors the problem is we may only see some sporadic case studies, any systemic analysis or meta analysis study without support from both big pharmaceutical companies and the government medical establishment guaranteed will not to be published, even if it can be published, downsizing the effect and euphemism will be needed--my experience from both research and medical fields. Government and establishment also shut us up for saying/asking…….I wish all the best for your recovery!❤️
Hi Darrell, I stumbled across your video. This is a very good description of the typical diagnostic process. (For me, nearly 19 years ago.) "Be your own best advocate" is great advice to anyone in the middle of these diagnostics. Not long after my nerve conduction test and a spinal tap, I could feel my walking was getting worse. I was able to get my neurologist on the phone and she said "OK, I've seen enough, I'm bringing you in for IVIG." My positive response to IVIG left no doubt that it was CIDP.
Thanks so much for watching and your comment. The best advocate advice is really what it's all about. By the way.. you spell your name wrong !!
Thanks for this information, appreciate the knowledge and your positive attitude big time!!
Thanks so much. Lots more content to come. This disease is so strange. I'm fascinated by how much the weather affects me. The cold is the worst.
Thank you Darrell. Very informative. My experience mirrors yours to a point, but also differs in quite a big way. Firstly, my diagnosis is CIDP. First major symptoms started early Feb 2022 (legs pretty much stopped working). Local General Practice Doctors didn't have a clue and assumed that I might have a back problem. I saw an Osteopath and also a sports masseur for the next three months and, whilst they certainly helped me, it was never going to be a cure (which we didn't know at the time). My health rapidly deteriorated in May, to the point where I couldn't walk at all and was falling over. I was admitted in hospital on May 30th and was diagnosed with CIDP within a couple of days. I was to spend 5 of the following weeks in hospital (three separate stays). I had all of tests that you mention in the video, plus a great deal more - brain scan, heart scan, kidney biopsy. However, it was the lumbar puncture and specialised blood tests that really threw light on the situation. By 4th June I was totally paralysed. Then the miracles started happening :) First treatment was IVIG. My response was pretty miraculous - within two days of the infusion my body had returned to pre-condition health. I was able to walk unaided and, apart from quite a bit of muscle atrophy, I had almost all mobility back. Then came the downside..... the benefits from IVIG only lasted 5/6 days, at which point I returned back to paralysis (and had to enter hospital again). This happened three times. By the 3rd time, the special blood tests had come back showing that I had an extremely rare variant, with only 5 prior known cases. Luckily for me, there was a different treatment which has been a further miracle. So, on the 3rd time, I was again given IVIG (that means that I had had three doses in 4 weeks! which the doctors were a bit concerned about giving me so much....) which picked me up to pre-condition health. They then supported that level through high-dose steroids (60mg per day) gradually tapered off over 6 months. And, finally, the special stuff - I was given an infusion of Rituximab. This stops my body from producing the errant proteins that causes the CIDP by lowering my immune system. It works fantastically well. I haven't had any further IVIG infusions since then. Steroids have now finished. And, fingers crossed, my immune system should come back online in July/August - they think without the initial problem. I realise that I've been extremely fortunate with my recovery. It was not fun, at all, going through to paralysis (pain was really intense, too) but to be returned to pre-condition health has been just amazing. I set myself a challenge that from November 1st to April 30th I would complete 2600 miles on my spin bike, so as to help regain some of the muscle strength that I lost. I'm currently at 1950 miles! :)
Thanks for sharing.. Such an awesome story of recovery. They do say that one nice thing about steroids vs ivig.. is sometimes steroids work better for being able to get off of them without a relapse. My goal is for next Fall to do the Grand Canyon Rim to Rim hike in one day. Likelyi will do that in the early October timeframe. In april I will again to the rim to river hike. Keep it up !! Thanks so much for watching !!
I had a similar Dx as yours.
Symptoms 1st started in Feb 2020, and progressively worsened until last week on May, where it excellerated from unassisted walking to paralyzed in a matter of 5days.
Dx'ed GBS Jun 2020, but 6wks later, I was paralyzed again. Dx was then changed to CIDP. I now receive regular infusions of IG, 1g/Kg/21days. In fact, I get an infusion at 8:30a, Tuesday.
I hope you're doing better with the regular infusions. It's amazing how getting IVIG / Steroids / or PE postively affects our quality of life. I do wish more research could be done to better figure out what is causing our immune system to go crazy. Probably something really simple.. we can hope that someday they can figure this stupid disease out and we can all be cured.
Darrel, thank you so very much for creating this TH-cam Channel and Videos ! It’s extremely comforting to here both your story and your experiences with CIDP. Since your IVIG treatments began have you regained and/or noticed nerve repair and or regaining feeling in your lower legs, feet and toes ? My initial 4 day IVIG infusion was 3 weeks ago and I’m scheduled for my second round of Infusion tomorrow. I’m already feeling periodic relief in my symptoms. Honestly, I’m just thankful to still be walking and able to still go to the gym. The Neurologist that diagnosed me said I’ve had CIDP for several years. Apparently my CIDP would flare up and then go into remission for months at a time. I hope and pray you continue to progress and do well !
Hi Keith. Thanks so much for watching and commenting. The IVIG for me was a godsend. My situation was weird, as I had a combination of acute onset, plus I just kept getting worse and worse. At about 9 weeks into my symptoms is when I finally got IVIG, and I could feel a difference almost immediately. But it was a long haul to wear i could walk again without assistance. Now, i'm at the point where most people that see me would not thing anything is wrong. The only thing I can't do anymore, that I used to is play golf. That's because of my back issues, which I only started having after my symptoms began. Anyhow, i'm glad you got diagnosed and are getting treatment. Be thankful that you have a good neurologist, and how that you are getting treatment, the sky is the limit. I have nerve damage, but I continue to improve slowly but surely.
@@turtle.warriors your positive attitude is motivating and your progress in healing is inspiring. Sorry to hear you having to give up Golf but based on what I’ve seen from you I have now doubt that you’ll be back on the Golf Course someday soon. As the old timers say “God willing and the Creek don’t rise” 💪🏼.
Hi thank you for your video. I am in the UK and have been suffering for a year with numbness throughput my body. I have been given a prediagnosis of cidp and referred to another hospital for formal diagnosis.
I recently needed a lumbar puncture and was admitted to hospital after with extreme post lumbar headaches. This was followed by severe pain and spasming in my right foot. I was left in pain for 2 days and difficulty with walking . No medic or neurologist came near me. A neurologist 2 days later came and just prescribed pregabalin and physio. I only received the pregabalin and then never saw anyone else other than ordinary doctors. Who had no advice or addressed the painful spasming other than to give me quinine. I have now been discharged with the drugs and spasming which happens every 3-4mins. I'm still awaiting my next appointment with neurologist 🤷♀️
This is so awful. It sounds like maybe during the lumbar puncture they may have hit a nerve which is acting up and causing the spasms. Hang in there. Nerves do tend to heal themselves. I'm taking both Gabappentin and Cymbalta for nerve pain and they do help.
Just wondering how many of patients here developed the symptoms after the mRNA vax? And how long it took to experience symptoms after the vax?
It would be interesting if a study was done for sure.
@@turtle.warriors the problem is we may only see some sporadic case studies, any systemic analysis or meta analysis study without support from both big pharmaceutical companies and the government medical establishment guaranteed will not to be published, even if it can be published, downsizing the effect and euphemism will be needed--my experience from both research and medical fields. Government and establishment also shut us up for saying/asking…….I wish all the best for your recovery!❤️