I was dx'd with CIDP about 13 years ago. IVIG infusions for a year along with intermittent steroids and I am now able to walk without aids however, I have an SP tube because my bladder function did not return. Thank you for making this easier for people to understand! Keep up the awesome work and now find a "fix" for it to never return!!
Someone asked me a great question as to why White Cell Counts drop after IVIG treatment. For some reason, it won't display as a question (??) but the answer is that it contains signalling chemicals that make circulating Neutrophils (main constituent of the White Cell Count) stick to the blood vessel walls and so there is an apparent drop in their number for a couple of days, until they loose their attraction to the walls and enter circulation once more. Bw Simon
Dr Simon Freilich hello, my muscle/nerve biopsy came back as Axonal Variant GBS. They ceased my IV Ig . I asked my neurologist to trial Ritixumab. Am now aspirating whilst I sleep and vocal changes as well as my eyesight comes and goes so I suppose the optic nerve is being attacked. Keep up the good work as we know so very little about the brain.
Diagnosis GBS 9/12/12 England : yet over four years past still on crutches, balance issues, cannot rise from a seated position, essential hand tremors, quad muscles especially this last year wasting even more, weak grip, slap feet when walking, surely these are not residuals? Mri OK NCT OK EMG next month. Fatigued daily.. Help!!! Is so so slow iam adamant there's something else wrong
I have fairly severe DADS. I've been getting Gamunex C infusions for 1½ years now and have not recovered the use of my toes, as it is assumed the nerves are dead. I have almost no muscle in my calves, and maybe 30% Plantar flexion strength recovery, and similar recovery with balance. It took 1 year to go from foot pain to full blown loss of balance. So I consider this much recovery to be as far as it gets. I can still walk, so there that.
Hello sir. Currently how you are managing her treatment protocol.. She is on IVIG every month or she on oral steroids ( Prednisolone) every day if yes on what dosage she is.. and any other supporting nutrition tablets.. Like tablet vit B 12 or omaga fatty acids capsule.. Etc. Please let me know sir..
This was a very clear explanation. Very interesting. Thank you for that. My albumin in the spinal liquor and the proteins are to high. Can that had something to do with the cause of symptoms like weak limbs, pain all over the body, and sleepy hands and feet? Thanks again
I was diagnosed with GBS four years ago, now doctors are saying CIDP. Amongst other things I fall quite a lot due to foot drop and poor balance. I've spent all my savings, lost my house and family and don't qualify for universal credit, the good news is the jobcentre plus are going to get me back into work because I have regained the use of my right arm.
Thank you for this informative video. Regarding corticosteriods for CIDP treatment, what is the maximum patient age they can be used as a first-line treatment?
Hi, I'm not aware of a maximum age per se and quite a proportion of people with it are older, but there's always considerations regarding potential side effects and risks of alternatives or doing nothing that have to be weighed up, and so these tend to be quite patient specific. Bw Simon
Doctor, thanks for the informative video. My father has been diagnosed with CIDP a week back. He was suffering from inability to walk during June-October 2021. Then suddenly recovered by taking medication and steroids provided by the doctor. He was able to walk for 15-20 days. Then suddenly relapse happened and Doctor confirmed for CIDP. Now Doctor is suggesting for IVIG Treatment. How long it will take to recover? My dad’s age is 59.
Hi Umesh, it's very variable and depends on how bad it's affected him and his baseline state of health. Would suggest you ask his medical team but it may not be simple to predict. Wishing him well, Simon
Hi Dr. Freilich, thanks for the great video. Is there an association between CIDP and neuroborreliosis? A relative of mine has been diagnosed with Lyme disease and has features of a demyelinating process with bilateral arm and leg weakness, pain and severe muscle atrophy which also affects the facial muscles. It looks like a CIDP type illness but I was wondering if a preceding diagnosis of Lyme disease makes something else more likely? (Of note symptoms relapse and remit and have not improved despite a raft of antimicrobials).
Thanks Marty - that's a very good but tough question. It is well recognised that Lyme can affect the central and peripheral nervous system and this is thought to be secondary to the inflammatory system being activated. There is a mixed literature as to what exactly the inflammatory process targets (different components of the nerve tissues and/or their blood supply). As you describe - facial involvement together with limb weakness are typical manifestations of this occurrence, and neurophysiology can show axonal loss and/or apparent demylination. I say 'apparent' as sometimes conduction slowing can be due to axonal loss (often the case with vasculitis). So, can it 'look' like CIDP - yes, is it associated with CIDP - I don't know but similar pathological processes are occurring. It's fairly rare here in the UK (at least where I live and work) and whilst I've seen lots of patients with CIDP, I've hardly seen any with confirmed Neuroborrelosis, so I can't claim expertise with this one. Hope this helps a bit though, best wishes, Simon
Dr Simon Freilich Thanks for the reply. Diagnosis in cases like these seems extremely difficult and my hat is off to neurologists. As you say the pathophysiology is similar and I’m hopeful a trial of steroids +/- IVIg etc will be of benefit. Thanks again
Hello Dr., my wife just got diagnosed with Chronic Inflammatory Sensory Polyradiculopathy. Would you please give me some info on this rare disease? Is there a cure? How did she get it? Thank you.
I was diagnosed with MMN over 20yrs ago, a year of IVIG Treatment symptoms seemed to improve. However 20 years later symptoms started to reappear. I was also told I have brain lesions typical for MS Patients, so the Dr's have no answers as of yet. I was told that I should have been monitored by Dr's however that did not happen... I am back at square one, a single dad raising a daughter on my own, I certainly don't like the stress of the unknown, my father died of ALS a few years back, he was hoping his condition could be treated with IVIG but was not.
Btw I am fully aware that I have conduction block as the immune system ate through multiple nerves, even typing this my left hand is numb and it is taking longer then before to type. a few months back my left side limbs went numb (arm, hand and leg) it seemed to improve but gradually re-appearing. I am frustrated and just want to go back to full function without the numbness, It's hard to describe numbness but still being able to feel but very differently. I'd like to be back on IVIG asap.
I am desperate for more information on MMN. Has there been any update since 2016? Is refractory still 15% and how have the meds worked immuno suppressants working out
Question? History of GBS in 1999, in 2017 diagnosed with CIDP. I have yet to hear my neurologist explain why each time I have a relapse I also have confusion, lasts at most 2-3 days. I've had brain scan as well as other tests and all negative. Such a coincidence without explanation. HELP! Get IVIG every 4 weeks.
Can you have this with symptoms only in hips, legs and feet. My hips and legs are very weak. Last march was able to hike for hours and then started getting weak and very numb legs and has progressed.
Is Brachial Neuritis part of this group? I am suffering from my 2nd episode after 5 years. Seeking options as pain is off the scale and I have severe loss of lateral movement in my right arm which has wrecked my life!
Hi, and a very good question. Whilst there is nerve inflammation, it's not considered part of the CIDP spectrum as those processes are relatively continuous (with fluctuations) whereas brachial neuritis is for the vast majority a once off. However, as with yourself in rare cases, experienced a second time as a discrete recurrence. There are other differences too, but beyond the scope of this. Best wishes, Simon.
Hi Doctor. post covishild vaccination my autoimmune disorder triggered and Recently I am diagnosed as a cidp patients. In our country it's impossible to ivig every month as it's very very expensive. Now I am on steroids from 15 days and how long I can continue Prednisolone ..? Can i switch to Mycophenolate mofetil for life time use ..? Dr sir please can you suggest me with the dosage... Please..?
What was your autoimmune disorder ? I got T1 diabetes and now I have MADSAM variant of CIDP it's so worrisome and gave me depression, please bhai aap kaise isse bache mujhe bhi batao
@@harshitbaghel7538 Hi brother sorry to hear that even your suffering from this.. I am managing through steroids only. Prednisolone 5 mg morning and 5 mg at night . it's in proven treatment line .. And it's working on me almost close to 90 % .. Along with this I take vitamin B12 tablet on alternative days.. Steroids have lots of side effects like sugar levels raise lot and blood pressure increase.. Etc .. IVIG is safer than steroids but very expensive around 2 lakhs every month to for infusion.. Immunosuppression drugs like mmf dint work on me.. Please consultant your neurologist for proper dosage and treatment.. Have patients all the best..
Can these conditions cause myoclonic jerks or fasiculations? Is nerve conduction studies the best diagnostic tool or can it be clinical diagnosis? Thank you!
Hi Razi, too complex for a one liner response, but you'll have to discuss with your doctor if a patient, or trainer if you're in a medical field. Bw Simon
I have this condition. IVIG treatments didn't work, even after 12 infusions. Please suggest another remedy. Thank you. My legs are deeply numb from knees into feet & also hurt very bad. This has been happening for nearly 2 years. I've also tried steroids & Methotrexate injections.
Thank you Dr Freilich for the video. My husband was diagnosed with cidp in Dec 2019, he's just completed his third treatment of ivig. His neurologist wants to see him in two months to discuss the possibility of axonal neuropathy. What is the difference between cidp and axonal neuropathy? What will she be looking out for when she sees him to either diagnose axonal neuropathy or stay with the original diagnosis? We noticed improvement mostly with his original medication of steroids. After the two ivig treatments we saw that his jerks had mostly gone, but pain and tingling still an issue. Hoping for some relief from this last lot of ivig. Thank you.
Hi Cathy - that's a bigger set of questions than a TH-cam comment section can handle! Unfortunately for many, CIDP can be a long and winding road. It's great that your in regular contact with the medical team and it sounds like they're taking proactive steps to monitor the clinical response and situation. Keep up the dialogue with them and stay strong! Bw Simon
@@DrSimonFreilich Thank you, yes we're learning that it's a long old process to diagnosis and we are fortunate in that the neurologist is very responsive even during the restrictions. Yep will stay strong.
@@jacksalami9945 Hope you're dong ok Davie, well we're now in 2022 and saw the neurologist last week and have been told he doesn't have CIDP, it might be MSA, which is worse. Will get to hear what it is next month when more results come back. Bless you and thank you for asking, take care.
I've been facing this disease since 2010 and I have different relapses during this period ،the last one was in 2015 , it was being the strangest relapse I've ever seen : for two months I couldn't talk and nine days I couldn't eat with my hand , there years heavy tongue unable to talk straight I was a player on instrument , until now I'm unable to play because of my hand even if I can write with . . My eyes are almost destroyed cause of drugs Cortisone . Now it was removed with Imuren Please I want staple situation could you tell me
I had GBS in 1985, my brother has PLS, and now I've been struggling with pain & fatigue for over a year. Current diagnosis -which changes with every specialist- is fibro. My symptoms are definitely exacerbated by my stress, but now the pain and fatigue are the main cause of the stress. Should I be screened for CIDP? My current neuro is young and I suspect has not treated GBS yet.
You don't have fibromyalgia. That's just medical bs for "We don't care enough about you to find out what's really going on" I suffered for 16 years until I couldn't walk at all and fibro couldn't be used as an excuse any longer.
Thank you for your explanation!, If the CIDP disease is treated with steroids and IVIG, can the disease worsen, or is the current condition maintained? (The disease was detected early. And health function is perfectly normal )
I am unsure of my atypical CIDP. I have an Axonal Variant of CIDP. Dr Simon would you please be so kind and explain to me what this is please. I am in a wheelchair and seem to be getting worse than better. Kind regards Madonna.
Hi Madonna, it sounds like you'll need to speak to your treating team for more details about your specific condition, and how they can help prevent further deterioration. Best wishes, Simon
Thanks Simon, there in lies my problem, my neurologist is on the spectrum, he’s a fantastic diagnostician. Just terribly difficult to communicate with. I think I am AMAN the Asian Variant. I live in a building full of Japanese, Korean and Chinese students. I have paraplegia from my Atypical CIDP and also from the onset developed MS like symptoms which are worsening. I originally asked them to test my Ig G4 to see if that was the reason for my poor response and was tossing up whether to try Rituximab if elevated,however it wasn’t. Thanks for your videos Dr Simon as they are very succinct in presentation and easy to understand. Once again kind regards.Madonna
@Dr Simon I have made an error I worked out my AXONAL Variant is ASMAN CIDP. My voice is going and my lips that were numb I have symmetrical facial drooping which makes me know dribble liquids and am now staring to aspirate. For now I have a great cough reflex and can clear my lungs. I’m scared of aspirational pneumonia. They asked if I would like to go on a respirator when required. I would like to go to a euthanasia facility like in Switzerland. I was a very active as an Emergency triage RN. The pain is too much to live with. I have an appointment with my cousin who is a pain specialist. He will receive quite a shock when he sees me in a wheelchair with spasticity and severe dysarthria. I helped him out when he was an intern/resident.
Great question! It is a predominantly large fiber neuropathy but people with CIDP can have quite painful neuropathy. There are occasional case reports of overlap syndromes but are quite rare. Bw Simon
I have a pt with demyelinating polyneuropathy without CB or temporal dispersion. The classic teaching in deferentiating acquired demyelinating from hereditary neuropathy by the presence of CB and temporal dispersion What is your take on this?
Hi Mahmoud, yes that is usually the case but there are still a couple of things to consider such as the clinical history (age of onset, speed, progression, family history etc) and on the neurophysiology side factors such as relative uniformity of slowing and symmetry. There are a couple of CMTs that can nevertheless be exceptions but they are very rare. Hope that helps, Bw Simon
My boyfriend just diagnosed with Multifocal acquired demyelinating sensory and motor neuropathy. 5 days of ivig 380 ml. Then in 3 weeks 5 days in one treatment. He lost his back shoulder muscles and arms. He's 6ft 2 and was 195 pounds now 150 pounds. All muscles gone. He didn't want his legs done on emg. He hates the pain. They did a spinal tap also. What is his outcome? Not much on this disease. He's been complaining to his family dr. For 5 years and nothing done. I sent him to emergency and then they bypassed his family Dr.
He still works and the nerologist is surprized as his arms nerves are dead. He pulled her are back. The nerologist quoted you must had been a very strong man. Which he was. I think it helped him to keep going with carpentry. He has lost ability to push the drill and uses both hands but is much slower. But compaired to other workers is still faster as others are very lazy. He's one tough cookie.
I have been foundto have CIDP in my brain. I have also received another diagnosis shortly before this finding of Adult Onset Tourette's. Can the demylanating process that is occurring in my brain cause the Adult Onset Tourette's?
Hi, CIDP is a peripheral nerve problem i.e outside of the brain/spinal cord. So there must be some confusion. Adult onset Torettes is rare and not something I can really advise with as I'm not really involved with it. Wishing you all the best though, Simon
@@DrSimonFreilich my neurologist said that for the vast majority of CIDP patients only their peripheral system is affected but he said with the rare patient (or rather unicorn as I would rather be called) the brainstem can be affected (in my case I have Autonomic Nervous System Dysfunction- in short if the brainstem controls it then it's fucked up/ my wording) and based on the MRI wo/w contrast there's evidence that the nerves in my brain and brainstem are showing signs that they are damaged and the likely reason is due to the immune system destroying the myelin sheath. He also stated that those nerves that are being destroyed are now effectively short circuting causing the Adult Onset Tourette's (due to my age).
Can anyone plzz suggest a good doctor in india... for cidp treatment may father is diagnosed as cipd... but doctor suggested us physiotherapy... but my dad health is going worse... we dont think physiotherapy is a correct treatment for cidp... we lost our all saving n business to treat my father can anyone plzz help us
In Australia we are between both the UK model (which I have worked for in the early to mid 90’s ) and the US model. Recently there were many grumblings both in the media and by my British doctor friends about intern wages being a nightmare to live off, the massive migration of British doctors to other countries such as my own due to the better health care standard and the NHS in general being overstretched which seems to be a perennial problem (especially when as Theresa May took on the ministerial portfolio for health). Strangely there seems to be a national entitlement like attitude towards accessing healthcare which in the near future sounds unsustainable. In Australia we don’t possess a problem towards an entitled attitude to free healthcare if we earn a reasonable salary (along with large employers adding a contribution to the employees contract so the employer themselves will appear more attractive for attaining and retaining their employees).We also (as the federal government allow low income workers access to free healthcare that in my view is first class treatment). In this respect our healthcare system both private and public don’t become overstretched as the NHS is and the US’s questionable and seemingly deplorable healthcare system. As we are expected to buy health insurance (an ongoing payment until death). We do not possess the ingrained self entitlement attitude towards accessing free services.
How on earth do people afford all the things you suggest when they are not even able to work ? This must cost millions and millions of dollars for all these specialists recommended..Who pays for it all ? I'm just curious..
I do work, so that is not an issue, many do with these diseases as the proper treatment keeps them in remission. On the cost- depends on the country. I get all my treatments and tests for free as we have general healthcare. First diagnosing this I am sure did cost perhaps tens of thousands as I got a lumbar puncture, a lot of blood work done as well as several MRI and CT scans of the back (spinal nerves?) and brain, and the elecro-neuron study (or what was it called). Mine was Guillan Barre which turned into the chronic variant, but as the onset was quick and severe they needed to rule out many things in a hurry. According to wiki 65g of the ivig cost 8000$ in 2010 just for the drug, you need to add the cost of administrating it, hospital visits etc. It is probably more expensive now but this was a number I found. My latest treatment ended today and it was 220g so about 27 000$ just for the drug. And this is my third treatment in 2 months. So good health plan or generally good health care system is essential. [not a native English speaker]
Interesting video, I had not heard of a few of these variants. I am a CIDP patient since 2013 and also a Liaison Office for the GSB/CIDP Foundation International for the area of Far North Queensland, Australia. I would be grateful for any information you could provide on GBS/CIDP. I also run a Facebook Support group facebook.com/groups/665613200206706/ Many thanks.
Thanks Lara for your comments and interest. You raise an important point regarding the presence of variants. For a long time variants were regarded with some suspicion and personally, I was often encouraged not to think beyond the diagnosis just being CIDP. This was to keep things simple and that its better to 'group than to split'. Clearly, this is no longer a tenable position as a number of papers I alluded to clearly demonstrate significant differences in disease course and treatment responsiveness between them. Unfortunately, not all of this information has made it yet into mainstream patient information leaflets or into specialists 'psyche'. Accessing the latest information is both difficult in terms of availability - due to requirements of journal subscriptions and also in terms of the scientific language - which can be a barrier to those not used to it. This is one of the reasons that I am making these videos to bring to public attention the latest developments, in what I hope are relatively straightforward terms. There is a very good UK and ROI GBS and Inflammatory Neuropathies Association called GAIN (www.gaincharity.org.uk/) which provide excellent and up to date information and booklets. An example booklet can be accessed here - www.gaincharity.org.uk/pdf/2016CIDP_&_Associated_Chronic_Variants_16pp.pdf and is very current in terms of information and is very readable. I hope that this helps and that you achieve remission in the near future. Wishing you only the best of future health Simon
What's the likelihood of ivig working on someone after three and a half years post main symptom onset (significantly decreased function and sensation below both knees), when prednisone oral didn't work?..
@@tanyaleigh8796 Hey Tania, sorry for the late reply. Actually yes I just got out of hospital today. I have IVIG every three weeks (although don't seem to be getting much out of it) I am also taking Palexia, Duloxetine & Lyrics daily, plus just had a 3 day Lignocaine infusion (in hospital) & that seems to be working ok so far so good. How about you ? I do hope your doing ok ?
Hi, I can't comment specifically but most inflammatory driven processes tend to be asymmetrical and CIDP is no exception to that. Whether or not CIDP is a possibility in your specific situation, depends on your clinical context and investigations as guided by your Neurology team. Bw Simon
I was dx'd with CIDP about 13 years ago. IVIG infusions for a year along with intermittent steroids and I am now able to walk without aids however, I have an SP tube because my bladder function did not return. Thank you for making this easier for people to understand! Keep up the awesome work and now find a "fix" for it to never return!!
Someone asked me a great question as to why White Cell Counts drop after IVIG treatment. For some reason, it won't display as a question (??) but the answer is that it contains signalling chemicals that make circulating Neutrophils (main constituent of the White Cell Count) stick to the blood vessel walls and so there is an apparent drop in their number for a couple of days, until they loose their attraction to the walls and enter circulation once more. Bw Simon
Dr Simon Freilich hello, my muscle/nerve biopsy came back as Axonal Variant GBS. They ceased my IV Ig . I asked my neurologist to trial Ritixumab. Am now aspirating whilst I sleep and vocal changes as well as my eyesight comes and goes so I suppose the optic nerve is being attacked.
Keep up the good work as we know so very little about the brain.
Diagnosis GBS 9/12/12 England : yet over four years past still on crutches, balance issues, cannot rise from a seated position, essential hand tremors, quad muscles especially this last year wasting even more, weak grip, slap feet when walking, surely these are not residuals? Mri OK NCT OK EMG next month. Fatigued daily.. Help!!! Is so so slow iam adamant there's something else wrong
I have fairly severe DADS. I've been getting Gamunex C infusions for 1½ years now and have not recovered the use of my toes, as it is assumed the nerves are dead. I have almost no muscle in my calves, and maybe 30% Plantar flexion strength recovery, and similar recovery with balance. It took 1 year to go from foot pain to full blown loss of balance. So I consider this much recovery to be as far as it gets. I can still walk, so there that.
Very good explanation , thank you so much .
My wife has had CIDP for 10 years, it was caught early because her friend is a Neurologist. He is retiring soon; we want this doctor!
Hello sir. Currently how you are managing her treatment protocol.. She is on IVIG every month or she on oral steroids ( Prednisolone) every day if yes on what dosage she is.. and any other supporting nutrition tablets.. Like tablet vit B 12 or omaga fatty acids capsule.. Etc.
Please let me know sir..
This was a very clear explanation.
Very interesting. Thank you for that.
My albumin in the spinal liquor and the proteins are to high. Can that had something to do with the cause of symptoms like weak limbs, pain all over the body, and sleepy hands and feet?
Thanks again
Thanks. Quite possibly but depends on a few things that I can't get into online. Best wishes though, Simon
Thank you Dr Freilich, very interesting and informative. Would you ever have time to do a talk on axonal neuropathy?
Already there :)
Oh thanks, is it on a separate vid or in this vid? I listened twice and couldn't find any info on it 🙁
I was diagnosed with GBS four years ago, now doctors are saying CIDP.
Amongst other things I fall quite a lot due to foot drop and poor balance.
I've spent all my savings, lost my house and family and don't qualify for universal credit, the good news is the jobcentre plus are going to get me back into work because I have regained the use of my right arm.
I am on the same way as you were.
Thank you for this informative video. Regarding corticosteriods for CIDP treatment, what is the maximum patient age they can be used as a first-line treatment?
Hi, I'm not aware of a maximum age per se and quite a proportion of people with it are older, but there's always considerations regarding potential side effects and risks of alternatives or doing nothing that have to be weighed up, and so these tend to be quite patient specific. Bw Simon
Plasmapheresis 👍. You’re brilliant thank you 🙏🏼
Thank you very much Dr. Freilich
Doctor, thanks for the informative video. My father has been diagnosed with CIDP a week back. He was suffering from inability to walk during June-October 2021. Then suddenly recovered by taking medication and steroids provided by the doctor. He was able to walk for 15-20 days. Then suddenly relapse happened and Doctor confirmed for CIDP. Now Doctor is suggesting for IVIG Treatment. How long it will take to recover? My dad’s age is 59.
Hi Umesh, it's very variable and depends on how bad it's affected him and his baseline state of health. Would suggest you ask his medical team but it may not be simple to predict. Wishing him well, Simon
Dr. Freilich, have you ever known a patient who experiences the numbing and tingling in their head?
All the time, but see a Neurologist to evaluate further. Bw Simon
thank you very much for this informative video sir
Hi Dr. Freilich, thanks for the great video. Is there an association between CIDP and neuroborreliosis? A relative of mine has been diagnosed with Lyme disease and has features of a demyelinating process with bilateral arm and leg weakness, pain and severe muscle atrophy which also affects the facial muscles. It looks like a CIDP type illness but I was wondering if a preceding diagnosis of Lyme disease makes something else more likely? (Of note symptoms relapse and remit and have not improved despite a raft of antimicrobials).
Thanks Marty - that's a very good but tough question. It is well recognised that Lyme can affect the central and peripheral nervous system and this is thought to be secondary to the inflammatory system being activated. There is a mixed literature as to what exactly the inflammatory process targets (different components of the nerve tissues and/or their blood supply). As you describe - facial involvement together with limb weakness are typical manifestations of this occurrence, and neurophysiology can show axonal loss and/or apparent demylination. I say 'apparent' as sometimes conduction slowing can be due to axonal loss (often the case with vasculitis). So, can it 'look' like CIDP - yes, is it associated with CIDP - I don't know but similar pathological processes are occurring. It's fairly rare here in the UK (at least where I live and work) and whilst I've seen lots of patients with CIDP, I've hardly seen any with confirmed Neuroborrelosis, so I can't claim expertise with this one. Hope this helps a bit though, best wishes, Simon
Dr Simon Freilich Thanks for the reply. Diagnosis in cases like these seems extremely difficult and my hat is off to neurologists. As you say the pathophysiology is similar and I’m hopeful a trial of steroids +/- IVIg etc will be of benefit. Thanks again
Hello Dr., my wife just got diagnosed with Chronic Inflammatory Sensory Polyradiculopathy.
Would you please give me some info on this rare disease? Is there a cure? How did she get it?
Thank you.
Great question 👍
I was diagnosed with MMN over 20yrs ago, a year of IVIG Treatment symptoms seemed to improve. However 20 years later symptoms started to reappear. I was also told I have brain lesions typical for MS Patients, so the Dr's have no answers as of yet. I was told that I should have been monitored by Dr's however that did not happen... I am back at square one, a single dad raising a daughter on my own, I certainly don't like the stress of the unknown, my father died of ALS a few years back, he was hoping his condition could be treated with IVIG but was not.
Btw I am fully aware that I have conduction block as the immune system ate through multiple nerves, even typing this my left hand is numb and it is taking longer then before to type. a few months back my left side limbs went numb (arm, hand and leg) it seemed to improve but gradually re-appearing. I am frustrated and just want to go back to full function without the numbness, It's hard to describe numbness but still being able to feel but very differently. I'd like to be back on IVIG asap.
@@jp5606 How are you doing now?
@@tanyaleigh8796 I'm still on this side of thr dirt.
I am desperate for more information on MMN. Has there been any update since 2016? Is refractory still 15% and how have the meds worked immuno suppressants working out
Question? History of GBS in 1999, in 2017 diagnosed with CIDP. I have yet to hear my neurologist explain why each time I have a relapse I also have confusion, lasts at most 2-3 days. I've had brain scan as well as other tests and all negative. Such a coincidence without explanation. HELP! Get IVIG every 4 weeks.
Tricky question! A couple of possibilities - dual pathologies or complication of the IVIG. Best wishes, Simon
Can you have this with symptoms only in hips, legs and feet. My hips and legs are very weak. Last march was able to hike for hours and then started getting weak and very numb legs and has progressed.
Hi, sounds like you need to see your doctor! Bw Simon
Is Brachial Neuritis part of this group? I am suffering from my 2nd episode after 5 years. Seeking options as pain is off the scale and I have severe loss of lateral movement in my right arm which has wrecked my life!
Hi, and a very good question. Whilst there is nerve inflammation, it's not considered part of the CIDP spectrum as those processes are relatively continuous (with fluctuations) whereas brachial neuritis is for the vast majority a once off. However, as with yourself in rare cases, experienced a second time as a discrete recurrence. There are other differences too, but beyond the scope of this. Best wishes, Simon.
Hi Doctor. post covishild vaccination my autoimmune disorder triggered and Recently I am diagnosed as a cidp patients. In our country it's impossible to ivig every month as it's very very expensive.
Now I am on steroids from 15 days and how long I can continue Prednisolone ..? Can i switch to Mycophenolate mofetil for life time use ..?
Dr sir please can you suggest me with the dosage... Please..?
Hi Raghu, I don't give this sort of advice and you'll have to speak with your own doctor. Bw Simon
What was your autoimmune disorder ?
I got T1 diabetes and now I have MADSAM variant of CIDP it's so worrisome and gave me depression, please bhai aap kaise isse bache mujhe bhi batao
@@harshitbaghel7538
Hi brother sorry to hear that even your suffering from this..
I am managing through steroids only. Prednisolone 5 mg morning and 5 mg at night .
it's in proven treatment line .. And it's working on me almost close to 90 % ..
Along with this I take vitamin B12 tablet on alternative days..
Steroids have lots of side effects like sugar levels raise lot and blood pressure increase.. Etc ..
IVIG is safer than steroids but very expensive around 2 lakhs every month to for infusion..
Immunosuppression drugs like mmf dint work on me..
Please consultant your neurologist for proper dosage and treatment..
Have patients all the best..
Can these conditions cause myoclonic jerks or fasiculations?
Is nerve conduction studies the best diagnostic tool or can it be clinical diagnosis?
Thank you!
Hi Razi, too complex for a one liner response, but you'll have to discuss with your doctor if a patient, or trainer if you're in a medical field. Bw Simon
I have this condition. IVIG treatments didn't work, even after 12 infusions. Please suggest another remedy. Thank you. My legs are deeply numb from knees into feet & also hurt very bad. This has been happening for nearly 2 years. I've also tried steroids & Methotrexate injections.
so sorry for you
Thank you Dr Freilich for the video. My husband was diagnosed with cidp in Dec 2019, he's just completed his third treatment of ivig. His neurologist wants to see him in two months to discuss the possibility of axonal neuropathy. What is the difference between cidp and axonal neuropathy? What will she be looking out for when she sees him to either diagnose axonal neuropathy or stay with the original diagnosis? We noticed improvement mostly with his original medication of steroids. After the two ivig treatments we saw that his jerks had mostly gone, but pain and tingling still an issue. Hoping for some relief from this last lot of ivig. Thank you.
Hi Cathy - that's a bigger set of questions than a TH-cam comment section can handle! Unfortunately for many, CIDP can be a long and winding road. It's great that your in regular contact with the medical team and it sounds like they're taking proactive steps to monitor the clinical response and situation. Keep up the dialogue with them and stay strong! Bw Simon
@@DrSimonFreilich Thank you, yes we're learning that it's a long old process to diagnosis and we are fortunate in that the neurologist is very responsive even during the restrictions. Yep will stay strong.
Hows your husband doing now Cath? prayers for him. I too have Cidp and it sure is tough. xo from australia
@@jacksalami9945 Hope you're dong ok Davie, well we're now in 2022 and saw the neurologist last week and have been told he doesn't have CIDP, it might be MSA, which is worse. Will get to hear what it is next month when more results come back. Bless you and thank you for asking, take care.
Dr. Freilich, do you review medical records for a second opinion for an international patient? If yes, how I contact you? Thank you.
Thank you for the enquiry but unfortunately I can't assist with this. Bw Simon
Thank you Dr. Freilich, after years with treatment IGV , prednisone can be CIDP remit (disappear), why? thank you very much
Sure these conditions can just stop, but unfortunately, if there is nerve damage it may not resolve. Bw Simon
I've been facing this disease since 2010 and I have different relapses during this period ،the last one was in 2015 , it was being the strangest relapse I've ever seen : for two months I couldn't talk and nine days I couldn't eat with my hand , there years heavy tongue unable to talk straight I was a player on instrument , until now I'm unable to play because of my hand even if I can write with . . My eyes are almost destroyed cause of drugs
Cortisone . Now it was removed with Imuren
Please I want staple situation could you tell me
I had GBS in 1985, my brother has PLS, and now I've been struggling with pain & fatigue for over a year. Current diagnosis -which changes with every specialist- is fibro. My symptoms are definitely exacerbated by my stress, but now the pain and fatigue are the main cause of the stress. Should I be screened for CIDP? My current neuro is young and I suspect has not treated GBS yet.
yes screen for it
You don't have fibromyalgia. That's just medical bs for "We don't care enough about you to find out what's really going on" I suffered for 16 years until I couldn't walk at all and fibro couldn't be used as an excuse any longer.
Thank you for your explanation!, If the CIDP disease is treated with steroids and IVIG, can the disease worsen, or is the current condition maintained? (The disease was detected early. And health function is perfectly normal )
Hi, it's difficult to know / predict but most people respond well to those treatments. Bw Simon
@@DrSimonFreilich thank you so much
I am unsure of my atypical CIDP. I have an Axonal Variant of CIDP. Dr Simon would you please be so kind and explain to me what this is please. I am in a wheelchair and seem to be getting worse than better. Kind regards Madonna.
Hi Madonna, it sounds like you'll need to speak to your treating team for more details about your specific condition, and how they can help prevent further deterioration. Best wishes, Simon
Thanks Simon, there in lies my problem, my neurologist is on the spectrum, he’s a fantastic diagnostician. Just terribly difficult to communicate with.
I think I am AMAN the Asian Variant. I live in a building full of Japanese, Korean and Chinese students. I have paraplegia from my Atypical CIDP and also from the onset developed MS like symptoms which are worsening.
I originally asked them to test my Ig G4 to see if that was the reason for my poor response and was tossing up whether to try Rituximab if elevated,however it wasn’t. Thanks for your videos Dr Simon as they are very succinct in presentation and easy to understand. Once again kind regards.Madonna
@Dr Simon I have made an error I worked out my AXONAL Variant is ASMAN CIDP. My voice is going and my lips that were numb I have symmetrical facial drooping which makes me know dribble liquids and am now staring to aspirate. For now I have a great cough reflex and can clear my lungs. I’m scared of aspirational pneumonia. They asked if I would like to go on a respirator when required. I would like to go to a euthanasia facility like in Switzerland.
I was a very active as an Emergency triage RN. The pain is too much to live with. I have an appointment with my cousin who is a pain specialist. He will receive quite a shock when he sees me in a wheelchair with spasticity and severe dysarthria. I helped him out when he was an intern/resident.
@@meimei10100 are you still with us? xoxox
Does cipd usually only affect the larger nerves or has it been known to affect the small fiber nerves?
Great question! It is a predominantly large fiber neuropathy but people with CIDP can have quite painful neuropathy. There are occasional case reports of overlap syndromes but are quite rare. Bw Simon
Thank you!
I have a pt with demyelinating polyneuropathy without CB or temporal dispersion. The classic teaching in deferentiating acquired demyelinating from hereditary neuropathy by the presence of CB and temporal dispersion
What is your take on this?
Hi Mahmoud, yes that is usually the case but there are still a couple of things to consider such as the clinical history (age of onset, speed, progression, family history etc) and on the neurophysiology side factors such as relative uniformity of slowing and symmetry. There are a couple of CMTs that can nevertheless be exceptions but they are very rare. Hope that helps, Bw Simon
My boyfriend just diagnosed with Multifocal acquired demyelinating sensory and motor neuropathy. 5 days of ivig 380 ml. Then in 3 weeks 5 days in one treatment. He lost his back shoulder muscles and arms. He's 6ft 2 and was 195 pounds now 150 pounds. All muscles gone. He didn't want his legs done on emg. He hates the pain. They did a spinal tap also. What is his outcome? Not much on this disease. He's been complaining to his family dr. For 5 years and nothing done. I sent him to emergency and then they bypassed his family Dr.
He still works and the nerologist is surprized as his arms nerves are dead. He pulled her are back. The nerologist quoted you must had been a very strong man. Which he was. I think it helped him to keep going with carpentry. He has lost ability to push the drill and uses both hands but is much slower. But compaired to other workers is still faster as others are very lazy. He's one tough cookie.
Good you
Hello dr Simon
Can CIDP present as isolated axonal sensory changes?
Yes, there is a sensory form of CIDP called CISP. MRI imaging shows swelling of the dorsal roots. Bw Simon
Dr Simon Freilich but would be axonal or demyelinating
Der doctor how can I contact you i have an important matter
Hello! I have a cas MADSAM. Prognosis?
Hello! I may have same condition so please can you tell me about your experience with it and what was your symptoms and how you cope with it
I have CIDP. It's been a nightmare. Steroids have helped but still there are problems.
have you tried ivig?
@@dukstedi Yes, been on it going on 2 years now.
I have been foundto have CIDP in my brain. I have also received another diagnosis shortly before this finding of Adult Onset Tourette's.
Can the demylanating process that is occurring in my brain cause the Adult Onset Tourette's?
Hi, CIDP is a peripheral nerve problem i.e outside of the brain/spinal cord. So there must be some confusion. Adult onset Torettes is rare and not something I can really advise with as I'm not really involved with it. Wishing you all the best though, Simon
@@DrSimonFreilich my neurologist said that for the vast majority of CIDP patients only their peripheral system is affected but he said with the rare patient (or rather unicorn as I would rather be called) the brainstem can be affected (in my case I have Autonomic Nervous System Dysfunction- in short if the brainstem controls it then it's fucked up/ my wording) and based on the MRI wo/w contrast there's evidence that the nerves in my brain and brainstem are showing signs that they are damaged and the likely reason is due to the immune system destroying the myelin sheath. He also stated that those nerves that are being destroyed are now effectively short circuting causing the Adult Onset Tourette's (due to my age).
@@Furby_will_protect are you sure that you don't have MS?
Can anyone plzz suggest a good doctor in india... for cidp treatment may father is diagnosed as cipd... but doctor suggested us physiotherapy... but my dad health is going worse... we dont think physiotherapy is a correct treatment for cidp... we lost our all saving n business to treat my father can anyone plzz help us
How is your father now...
nhs envy of the world how good are we
Thanks - We are very fortunate to have it! Bw Simon
In Australia we are between both the UK model (which I have worked for in the early to mid 90’s ) and the US model.
Recently there were many grumblings both in the media and by my British doctor friends
about intern wages being a nightmare to live off, the massive migration of British doctors to other countries such as my own due to the better health care standard and the NHS in general being overstretched which seems to be a perennial problem (especially when as Theresa May took on the ministerial portfolio for health). Strangely there seems to be a national entitlement like attitude towards accessing healthcare which in the near future sounds unsustainable. In Australia we don’t possess a problem towards an entitled attitude to free healthcare if we earn a reasonable salary (along with large employers adding a contribution to the employees contract so the employer themselves will appear more attractive for attaining and retaining their employees).We also (as the federal government allow low income workers access to free healthcare that in my view is first class treatment). In this respect our healthcare system both private and public don’t become overstretched as the NHS is and the US’s questionable and seemingly deplorable healthcare system. As we are expected to buy health insurance (an ongoing payment until death). We do not possess the ingrained self entitlement attitude towards accessing free services.
How on earth do people afford all the things you suggest when they are not even able to work ? This must cost millions and millions of dollars for all these specialists recommended..Who pays for it all ? I'm just curious..
I do work, so that is not an issue, many do with these diseases as the proper treatment keeps them in remission.
On the cost- depends on the country. I get all my treatments and tests for free as we have general healthcare.
First diagnosing this I am sure did cost perhaps tens of thousands as I got a lumbar puncture, a lot of blood work done as well as several MRI and CT scans of the back (spinal nerves?) and brain, and the elecro-neuron study (or what was it called). Mine was Guillan Barre which turned into the chronic variant, but as the onset was quick and severe they needed to rule out many things in a hurry.
According to wiki 65g of the ivig cost 8000$ in 2010 just for the drug, you need to add the cost of administrating it, hospital visits etc. It is probably more expensive now but this was a number I found. My latest treatment ended today and it was 220g so about 27 000$ just for the drug. And this is my third treatment in 2 months. So good health plan or generally good health care system is essential.
[not a native English speaker]
I'm Canadian, so there's one answer.
Interesting video, I had not heard of a few of these variants. I am a CIDP patient since 2013 and also a Liaison Office for the GSB/CIDP Foundation International for the area of Far North Queensland, Australia. I would be grateful for any information you could provide on GBS/CIDP. I also run a Facebook Support group facebook.com/groups/665613200206706/ Many thanks.
Thanks Lara for your comments and interest.
You raise an important point regarding the presence of variants. For a long time variants were regarded with some suspicion and personally, I was often encouraged not to think beyond the diagnosis just being CIDP. This was to keep things simple and that its better to 'group than to split'.
Clearly, this is no longer a tenable position as a number of papers I alluded to clearly demonstrate significant differences in disease course and treatment responsiveness between them.
Unfortunately, not all of this information has made it yet into mainstream patient information leaflets or into specialists 'psyche'.
Accessing the latest information is both difficult in terms of availability - due to requirements of journal subscriptions and also in terms of the scientific language - which can be a barrier to those not used to it. This is one of the reasons that I am making these videos to bring to public attention the latest developments, in what I hope are relatively straightforward terms.
There is a very good UK and ROI GBS and Inflammatory Neuropathies Association called GAIN (www.gaincharity.org.uk/) which provide excellent and up to date information and booklets. An example booklet can be accessed here - www.gaincharity.org.uk/pdf/2016CIDP_&_Associated_Chronic_Variants_16pp.pdf and is very current in terms of information and is very readable.
I hope that this helps and that you achieve remission in the near future.
Wishing you only the best of future health
Simon
What's the likelihood of ivig working on someone after three and a half years post main symptom onset (significantly decreased function and sensation below both knees), when prednisone oral didn't work?..
Hi Lauren, difficult to predict, and depends on severity but may still be worth a go if you're doctor thinks there is mileage. Bw Simon
Lauren F. Sounds like AIDP.
I hope by now that you’re ok.
Sir my age is 18year old
Please treatment me
I am cidp patient 😭😭
God heal you
me 2 im 28
im CIDP ...
Same here I am also a cidp patient for 8 years now l am 18 years
Feel's like Im being Electrocuted every 5 seconds. Even Morphine doesnt help it. Prayers for anyone else suffering XOX
are you getting treated for CIDP? Most opioids don't help nerve pain. I learned the hard way.
@@tanyaleigh8796 Hey Tania, sorry for the late reply. Actually yes I just got out of hospital today. I have IVIG every three weeks (although don't seem to be getting much out of it) I am also taking Palexia, Duloxetine & Lyrics daily, plus just had a 3 day Lignocaine infusion (in hospital) & that seems to be working ok so far so good. How about you ? I do hope your doing ok ?
My neurologist says “ it’s not CIDP because CIDP is symmetrical “ ….find a new neurologist??? It’s been almost 3 months of poly neuropathy
Hi, I can't comment specifically but most inflammatory driven processes tend to be asymmetrical and CIDP is no exception to that. Whether or not CIDP is a possibility in your specific situation, depends on your clinical context and investigations as guided by your Neurology team. Bw Simon