just seen this

[UPDATE] ‘Corona medicine based on Dutch antibody will be there within six months’

I see to be going through that right now, last two full loading doese did nothing and if anything, I have regressed.

i was/am treated by Dr Niranjanan Nirmalananthan at St.George’s Hospital and would have no qualms recommending him.
His secretary’s phone number is 020 8725 4630 if that is of any help to you?

Dr Niranjanan Nirmalananthan
Consultant Neurologist
Contact
Secretary: Anna Jones

Secretary email: anna.jones0@stgeorges.nhs.uk

Secretary telephone: 020 8725 4630

Clinical interests
Dr Nirmalananthan’s main specialist interests are in neuromuscular disorders and headache disorders. He runs weekly regional specialist clinics for nerve and muscle disease and headache. In addition he sees general inpatient and outpatient neurology at St George’s. His main academic interests are in neurogenetics.

Professional profile
Dr Nirmalananthan is a Consultant Neurologist at St George’s University Hospitals NHS Foundation Trust and Honorary Senior Lecturer at St George’s University of London.

Dr Nirmalananthan graduated in Natural Sciences from Cambridge University before studying Medicine at King’s College London. He was awarded a PhD in Neuroscience from the Institute of Neurology, University College London before undertaking higher specialist training in neurology at St George’s Hospital and the National Hospital for Neurology and Neurosurgery in London.

He is currently Clinical Lead for Neurology.

Prizes, memberships and fellowships

Lord Adrian Prize, British Society for Clinical Neurophysiology, 2009
Sir Charles Symonds Prize, Association of British Neurologists, 2007
Medical Research Council Clinical Research Training Fellowship, 2005-2008
Member, Association of British Neurologists
Member, British Society for Clinical Neurophysiology
Member, British Peripheral Nerve Society
Member, British Association for the Study of Headache
Member, International Headache Society
Member, Royal College of Physicians
Editorial board member: Frontiers in Genetic Disorders

I have CIDP and my symptoms tend to ease a fair bit in the afternoons, only to then return in the late afternoon/early evening
They don’t go completely but do ease a fair bit some days

Do keep an eye on it though, as i found that it got more intense and then I had trouble with standing and balance for a time, that then eased.
You may well not get that at all, Each of us seem to present with unique symptoms, with some similarities with others.
So what I have experienced, you may well not .

Yes i am in the UK and have been to that site already, they only have a stupid facebook group, i loathe facebook.

You describe it as muscle twitching, for myself it feels like a small electric current is being switched on and off in my legs, but hundreds of times a min. It isnt painful as such, but does make standing for any period of time difficult

I didn’t understand one word in three there! 😀
but, one thing I have learned is that there are as many variations of CIDP as there are hot dinners! My own seems to vary hour by hour , let alone day by day – from total numbness up past the knees and very hard to ake the legs work at all to just a slight pins n needles in them. The arms are beginning to be the same way as well.

I should also add that I am in the UK, so our treatments and names for things are likely to be different to yours, as such I’m unlikely to be your best source of answers mate, sorry. I was really tagging in to learn a bit more myself.

Does make sense doesn’t it. interestingly, there is no real treatment, let alone a cure for the Buergers. however there are now some trials being done that does offer some hope, but nothing like say the IVIG option.
research will only occur i feel if money is thrown at it, as there isn’t a high percentage of those with it.