I have been diagnosed as having L.S.S (CIDP) but know very little about it. It seems that there is a lot more information on GBS. Can anyone tell me what the difference is? What makes it manifest? Can you go in remission with it?
Hi. I also was diagnosed with Lewis Sumner. It is also called MADSAM. It is a very rare form of cidp. It is chronic unfortunately. No one knows what brings it on. There is very little known about it because it is so rare. There are a few big differences. It is common for proteins not to be elevated when they test spinal fluid. Symptoms often start in the hands. It may not come on symmetrically. The treatment is the same. My symptoms came on severe and fast like gbs but didn't stop. With gbs damage stops within 4 weeks. I have recovered to the point of functioning with a new normal. I have been on ivig and/or high dose steroids for treatment for almost 5 years. There's also a lot of variation between those of us with this variant. If you have any questions let me know.
Thanks for your reply. I live in Spain and the Doctors do not seem to know anything about the disease so I am a test case. I collapsed and was paralysed from the neck down, last April. They gave me four bottles of IVig a day for five days. After three I got feeling back and was discharged on the sixth day. It lasts about 6/7 weeks then in I go again. Five times this year. The Doctors have now given me steroids but keep reducing the doses. What do you call a high dose?
Im taking high doses of Vitimin D, C, B, Q10 and Kelp which seem to help. Have you anything that has improved your health?
mabes said:
Hi. I also was diagnosed with Lewis Sumner. It is also called MADSAM. It is a very rare form of cidp. It is chronic unfortunately. No one knows what brings it on. There is very little known about it because it is so rare. There are a few big differences. It is common for proteins not to be elevated when they test spinal fluid. Symptoms often start in the hands. It may not come on symmetrically. The treatment is the same. My symptoms came on severe and fast like gbs but didn't stop. With gbs damage stops within 4 weeks. I have recovered to the point of functioning with a new normal. I have been on ivig and/or high dose steroids for treatment for almost 5 years. There's also a lot of variation between those of us with this variant. If you have any questions let me know.
I was paralyzed head to toe. We did 5 day ivig but it wasn't enough. Then went on another 5 day loading dose and iv prednisone 1000mg or 1 gram per week for 12 weeks and then both. First weekly treatments and then tapered to now just started every 4 week to see how it goes. I couldn't do anymore steroids as of last year which had tapered to 350 per week. My body and mind said no more. I do dip but don't feel great with the ivig all the time either. I sustained a lot of damage trying to figure out what dosage I absolutely needed. I do have exacerbations even with treatment. I am glad your responding well to treatment.
Marion I wanted to say stay ahead of the neuropathy. IVIG has a 28 day cycle. It is better to get ivig more often and eliminate steroids when possible. You are still relatively low frequency with ivig if it is spread 6-7 weeks. They have found it may be better to get lower doses of ivig more often. So maybe you can discuss with your doctor breaking up your larger dosage into smaller ones that are infused at least every 3 weeks. Avoid dips if you can. If you notice any dips go to 2 weeks until you find that you are stable. Then you can wean slowly. The most reliable methods of knowing that your holding is by doing neurological exams on yourself. Make notes if you notice there are functions that you can no longer do. Your nerves will hurt as they heal so measuring pain is not always an accurate measurement. I also wanted you to know that as severe as my circumstances have been, I am very functional now and enjoy a full life.
Hi,
There is a doctor in California who specializes in Lewis-Sumner Syndrome. It might be possible to go into remission. You would have to get in touch with the Doctor to get that question answered.
Dr Richard A. Lewis
He is at the Cedars-Sinai in Los Angeles. He is one of the doctors who discovered the variation of CIDP called Lewis-Sumner Syndrome.
1-800-CEDARS-1
(1-800-233-2771)
Available 24 Hours a Day
Hi Marion,
I have just seen your post and thought I would tell you about my treatment. I was diagnosed with CIDP in 1999 and after a time I lost my legs completely and took a course of long term steroids to get back on track. I came off the steroids and apart from a few blips here and there managed life well, until things got worse so I started Azathioprine an immune suppressant drug with I took for 10 years, during which time life was very good, I managed well and really had no nasty blips, unfortunately 10 years is the max for taking this drug due to the side effects that they can course. It was during this time that I had another nerve induction test and it came to light that I had L.S.S variant, my specialist said that the treatment I had taken during those previous years would have been exactly the same. I have had a miserable couple of years while I have been off the azathioprine, losing the power and control of my legs I also started to lose the use of my left arm, I was falling down regally so I took 500mg of methylprednisolone (steroids) per day for 5 days, these did the trick but boy did the 4th & 5th days completely mess with my head!! I had these steroids on 5 separate occasions and each course gave me around 3 to 4 months relief which really was not long enough so I have gone back on the Azathioprine 100mg per day, I have been taking them now for nearly 6 months and I am feeling much better and starting to feel like my old self. I have lived with this condition for 14 years and life on the whole has been good, I do believe that you need to listen to your body and understand that when it needs to rest you must, I am so body aware and notice the slightest change in surface numbness/temperature change anywhere on me, and the lovely dropped big toe that I always have is not to much of a problem until I trip up with it.........which is quite an feet to do. I also say tweek things to suit you, if walking downstairs is a problem every now and then, come down on your bottom, its safer and at least you get down. Always remain positive, life can be hard at times and it does get you down but always believe you will get better.
Take care, Keep strong.
Kim x