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

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 🙁

Thanks. Quite possibly but depends on a few things that I can't get into online. Best wishes though, Simon

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 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..

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

Sure these conditions can just stop, but unfortunately, if there is nerve damage it may not resolve. Bw Simon

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 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

I am on the same way as you were.

Thank you for the enquiry but unfortunately I can't assist with this. Bw Simon

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

Hi, sounds like you need to see your doctor! Bw Simon

All the time, but see a Neurologist to evaluate further. Bw Simon

Tricky question! A couple of possibilities - dual pathologies or complication of the IVIG. Best wishes, Simon

so sorry for you

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

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!

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.

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

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.

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

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

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..

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

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).

@@lesliehyde are you sure that you don't have MS?

How is your father now...

Hi, it's difficult to know / predict but most people respond well to those treatments. Bw Simon

@@DrSimonFreilich thank you so much

Hi Cathy - that's a bigger set of questions than a KZfaq 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.

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.

have you tried ivig?

@@dukstedi Yes, been on it going on 2 years now.

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.

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

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.

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

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 ?