Madsams Disease

Good evening David in Worcestershire in the United Kingdom.
Ref :- Multifocal acquired demyelinating sensory and motor neuropathy: or Lewis-Sumner syndrome.
I have had this for 7 years and I must admit it has been challenging. It went from a tingle to full muscles in my arms shutting down in 30 minutes.

The lost of all main muscles above my waist as left me with me a serious loss of strength. At least I can still grip with my hands. Over the last 3 months I have been finding it harder and harder to breath. Constance pressure, like being given a hug. The IVIGG treatment had a zero effect on me and in the UK there seems very little known about this condition in our own NHS. Currently their policy is a “Wait and See” policy. Im only guessing but I think the diaphram is not working as it should. My doctor has finally acknowledged the wiat and see is not good enough and im having an x-ray next week. Has anyone else experienced this constant hugging feeling. If I was a teenager in the 1960’s it would have been normal. At least I still have a sence of humour. Kind regards David

Hello David,
We live in north Scotland and my husband has had CIDP for about 8 years now. He started with the tingling in his hands which developed to his feet then up the arms to elbow height and up to his knees. He has medication and IVIG infusions of Kioveg every 4 weeks but during the last 2 years he has developped difficulty with his breathing. This has gradually worsened until now he says it is like somebody sitting on his chest all the time or that there is a tight band around his chest. When he first told the GP about it, his chest was listened to and as there was no noticeable noise in his lungs it was put down to being left following a bout of pneumonia he had the previous year. Since that time he has talked to a gp about it a few times but no solution has been found. Because of the increased discomfort he eventually got a consultation with a respiratory consultant who could also not see a reason for this. (Although he has been a smoker, that was hinted to be the cause!) She decided to liaise with his neurolagist and so far there has been no diagnosis apart from a ‘possibility’ that he has sleep apnia - what? Sadly any progress has been hampered with the advent of Covid-19 and it seems he has to live with the decision that he is a ‘medical mystery’ and an ‘anomally’. I’m sorry this is not a solution for you but maybe you feel just a tad better knowing that someone else has had similar experiences to yourself. Regards, Helen

Hi Helen. Thankyou so much for sharing. I will let you know how my visit to x~ray goes. The hug sensation is common I hear from asthma to cipd. I’m actually hoping that my diaphragm has stopped operating due to the demylination. Take care

David, i was diagnosed with GBS in 2017 and now CIDP. I originally had the feeling you described. It was especially worse after eating and more of I are to much. I still experience if once in awhile. But my dr did breathing tests and all came back normal. I had plasmapheresis as opposed to IVIG and it did wonders for me. Now I take cell Celt 2x a day and it seems to be fending off the attacks. Started with 1000mg 2x a day and now down to 500 mg 2 x a day.
I also try to exercise to build up some stamina although I don’t feel like I am not taking large steps forward I am not going backwards. And I think it has helped my breathing. I ride a stationary bike and am up to 20 min. from only able to do 5 min a year ago. I have taken a drug called Singulair in the past (before CIDP) to help with breathing. It worked well.
I hope you get some answers.

Hi Everyone , I have CIDP. I also had pain when I could not breathe plus muscle pains throughout my body. I lost 25 pounds without trying. I ate everything in sight. I was told that it was old age, Everyone loses their muscles as they age. It starts as early as age 40. I got on the internet and searched for an answer. I found what that is called. Sarcopenia. I found a powder along with changes in my diet that was food for CIDP and good for Sarcopenia. It had the right ingredients for what muscles require daily to function without pain. I have been taking it every day since then. I have the ability to exercise, to walk, to breathe, to be active without my chest or my legs or arms hurting like they did before. I checked my diet. Do you get enough protein for your disease? I did not, When I check what I should be eating for CIDP I was amazed at how much I was lacking in the amount for someone my age. I have yet to find a dietitian who knows exactly what my diet should consist of. But ask how much of which foods you need for the diseases that you have. Good luck. I hope this is helpful for you. It worked for me. Ethel

Hi David,

Howard here just outside Llandudno (and near Conwy) on the beautiful north Wales coast.

I was very sorry to learn about your breathing difficulties, and I might be able to help. I am now 70 years of age, and following thorough tests at the NHS’s Walton Centre in Liverpool around 3 years ago, I was diagnosed as having C I D P.

What I have to say initially has nothing to do with C I D P, but I will bring C I D P into the picture as I progress, so please bear with me.

As a small child, I developed a condition called Pectus Excavatum, which I will henceforth refer to as PE. There is plenty of info on the internet about this condition (which I have had all my life), but basically the sternum grows inwards, creating a ‘dent’ in the chest. It can compress the heart and lungs, and it may not therefore surprise anyone that lung capacity is affected. I had a respirometer test a few years ago, which showed that my lung capacity is just 70 per cent of what it should be for my height and build. This denting and compression business happens to varying degrees in idividuals who have P E, and my P E is probably ‘in the middle’ as far as severity is concerned. I also had bad asthma and frequent bronchitis as a child, but although I am still suscepitble to this stuff, it is not as bad now as it used to be. One of the major day-to-day symtpoms of PE is the feeling of being short of breath as if you are being subjected to a ‘bear hug’. Just as you, yourself have described in your account of your C I D P. My own personal way of putting it is that when I lie down, it feels as if an elephant has his foot on my chest, but this feeling is there whatever posture I take up, lying, standing or sitting.

Generally speaking, GPs in the UK have been quite naïve regarding P E, and it is only in recent years that things in the UK have started to improve in this respect.

My shortness of breath (ie feeling of lack of oxygen as opposed to asthma wheezing) got me down so much so, that when I eventually left home to go and work and live in London, I did some research, and I eventually read an article in a magazine written by someone who had said that swimming had helped greatly. So I learned to swim and became addicted to it, because it was the best thing I discovered to counteract this ‘bear-hug’ effect. In fact, it completely changed my life to the extent that in my late twenties and thirties, I achieved life-saving qualifications.

Fast forward to my C I D P diagnosis. Had I been free of P E, I cannot say whether the C I D P would itself have caused me to be short of breath, but I am pretty certain, that all those years of regular swimming may well have counteracted any ‘desire’ for the C I D P to give me breathing problems.

About 18 months ago, in addition to swimming, I also took up Nordic Walking, using the correct walking poles for this activity. I am so glad that I did, for when the first Covid lockdown occurred in March of this year, I was unable to use the swimming pool for over six months, and in order to get the required swimming exercise to counteract the ‘bear hug’ effect, and also keep fit from the general cardiol-vascular point of view, I need to swim 40 lenths (25 metre lengths), meaning that I need to be in the water for about 35-40 minutes. Open water swimming in the sea is totally out for me due to hypothermia considerations.

What I discovered after the first lockdown started was that to a great extent, learning various techniques in Nordic Walking is a great help in counteracting the ‘bear hug’ effect. I can even give myself quite a good ‘body workout’. The poles help me me to keep upright when I use them, and as I walk, I push my chest out and when I breathe in, I push my diaphragm out as far as possible. It isn’t possible in this post for me to describe how to use the poles, but there are plenty of YouTube videos showing how to learn Nordic Walking. It is well-known that N W is very good for people who have neurological condidtions such as C I D P, and it has been a great help to me, not only as part of my C I D P management, but also as part of my P E management. Note that ordinary trekking poles are not suitable. You need to use the correct poles. Mine are made from carbon fibre by a firm called Leki. There is a shop in Cambridge called ‘Open Air Cambridge’ that specialises in N W kit, and the staff are very knowledgeable and helpful. I found that (very surprisngly), most other ‘outdoor’ shops don’t cater for the Nordic Walker.
I hope that this helps anyone who has the ‘bear-hug’ effect whether caused by C I D P or any other condition.
With all good wiŝes

Howard

Many thanks sir.