CIDP in Japan
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January 12, 2010 at 9:47 am
Greetings to all members of this forum. I am a 45yr old British male who has been living in the south of Japan for the past 18yrs. I do not suffer from CIDP personally but I have recently come into contact with someone who does and I would like to help him if I can.
Two years ago I made contact with a roofing contractor and together we re-roofed my house over the course of one year – it was big and difficult project and whilst we were working, we got to know each other fairly well. Towards the end of the job the roofer told me that he was suffering from partial paralysis in his left arm and that he’d been to hospital to have it checked out and even briefly hospitalized. I didn’t think much of it as I’d suffered from a trapped nerve in my neck myself and knew many people similarly affected.
Last week I called my roofer again as there was a problem with one of the roofs – it had been one year since we last met. He came out to greet me in the car park and I was shocked to see that he could hardly walk and is now paralysed in his left arm and left leg – he walks with specially adapted crutches and leg irons. He told me that he has been diagnosed with CIDP and that he stands the chance of losing the use of his other two good limbs. He is going to a university hospital for treatment but the doctors do not have much experience of CIDP and are not able to offer him much hope. The poor man is suffering from depression and is not being looked after properly – he’s 38yrs old and still lives with his parents but they don’t seem to be able to help him with basic tasks such as washing his hair, shaving or cleaning his ears – he was in a terrible state. He told me that the doctors have talked to him about having a blood transfusion but that this holds some risks and that if it isn’t successful his condition could deteriorate more rapidly. Unfortunately he doesn’t speak English. I would like to help him in some way, anything would be better than his current isolated state. Any advice you might be able to offer I will pass on to him and I’m sure it will be gratefully received. Thank you for your time.
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January 12, 2010 at 11:00 am
[I]These are two published papers dealing with CIDP. I googled CIDP studies in Japan. The group publishing the second of the two would seem to be a good place to start as they are aware of IVIg and steroid therapies. If the docs your gentleman is seeing are speaking of blood transfusions, I wonder if they are speaking of Plasmaphoresis … no more or less risky than any other treatment as far as I am aware. Some of the others here can give you much more advice.[/I]
[COLOR=”Navy”]Comparison of Electrophysiological Findings between CIDP and HMSN-1.Accession number;99A0676725
Title;Comparison of Electrophysiological Findings between CIDP and HMSN-1.
Author;HASEGAWA OSAMU(Yokohama City Univ., Sch. of Med.) MATSUMOTO SHUNSUKE(Yokohama City Univ., Sch. of Med.) IINO MITSUHARU(Yokohama City Univ., Sch. of Med.) KURITA RYUKO(Yokohama City Univ., Sch. of Med.) KUBOTA YUKIKO(Yokohama City Univ., Sch. of Med., Hosp.)
Journal Title;Brain NerveJournal Code:Z0685A
ISSN:0006-8969
VOL.51;NO.5;PAGE.411-414(1999)
Figure&Table&Reference;FIG.2, REF.6
Pub. Country;Japan
Language;Japanese [/COLOR][COLOR=”Green”]A Quadriplegic Patient with Chronic Inflammatory Demyelinating Polyneuropathy(CIDP) Who Responded well to Corticosteroids and Intravenous Immunoglobulin Therapy.
Accession number;02A0138885
Title;A Quadriplegic Patient with Chronic Inflammatory Demyelinating Polyneuropathy(CIDP) Who Responded well to Corticosteroids and Intravenous Immunoglobulin Therapy.Author;FUKAE JIRO(Juntendodai I Juntendoizunagaokabyoin Noshinkeigeka) OKUMA YASUYUKI(Juntendodai I Juntendoizunagaokabyoin Noshinkeigeka) NODA KAZUYUKI(Juntendodai I Juntendoizunagaokabyoin Noshinkeigeka) FUJISHIMA KENJI(Juntendodai I Juntendoizunagaokabyoin Noshinkeigeka) GOTO KEIGO(Juntendodai I Juntendoizunagaokabyoin Noshinkeigeka) MIZUNO YOSHIKUNI(Juntendo Univ., Sch. of Med.)
Journal Title;Brain NerveJournal Code:Z0685A
ISSN:0006-8969
VOL.53;NO.12;PAGE.1115-1118(2001)
Figure&Table&Reference;FIG.1, TBL.1, REF.13
Pub. Country;Japan
Language;Japanese [/COLOR] -
January 12, 2010 at 12:13 pm
I have CIDP and I go monthly to have a blood product called IVIG.
It helps slow down the attack of the nerves.
Perhaps this mans doctor could somehow get in touch with doctors that know more about CIDP and how to treat it.
I do know that there are many doctors but don’t know the best way to get in touch with them…perhaps someone else could help out?
I also take many pills but one pill that helps with pain is gabapentin.
Good luck, and it is very nice of you to help this man out!
Rhonda from Canada -
January 12, 2010 at 5:01 pm
Dear Humph (odd salutation),
Rhonda’s advice is spot on. Your friend needs to see a neurologist who knows how to correctly diagnose CIDP and how to develop a successful treatment plan. CIDP is hard to diagnose and success of treatment varies.
There are basically five courses of treatment that I’m familiar with:
1) Plasma Pheresis (not a transfusion) in which the blood of the patient’s plasma is exchanged for donor plasma.
2) Cortisteroid treatment
3) Chemotherapy
4) IVIg an intervenious gamma globulin
5) Stemcell (new)
Plasma Pheresis and IVIg may be combined with Immunosuppresants to lower the bodies ability immune system from producing the offending antibodies.If you want to help your friend, I suggest contacting the staff of this institute to locate CIDP support groups in Japan and to locate neurologists in Japan who are associated with this Forum. Also searching the web may help you identify possible neurologists.
He needs to see a knowledgeable neurologist and expediency is of the utmost importance.
Thank you for being there for your friend. I wish you all the success and Godspeed.
Gary
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January 12, 2010 at 5:12 pm
[I]which is why I suggested the folks who wrote the following:[/I]
[COLOR=”Navy”]Author;FUKAE JIRO(Juntendodai I Juntendoizunagaokabyoin Noshinkeigeka) OKUMA YASUYUKI(Juntendodai I Juntendoizunagaokabyoin Noshinkeigeka) NODA KAZUYUKI(Juntendodai I Juntendoizunagaokabyoin Noshinkeigeka) FUJISHIMA KENJI(Juntendodai I Juntendoizunagaokabyoin Noshinkeigeka) GOTO KEIGO(Juntendodai I Juntendoizunagaokabyoin Noshinkeigeka) MIZUNO YOSHIKUNI(Juntendo Univ., Sch. of Med.) [/COLOR]
[I]They are obviously knowledgeable. They could refer your friend to a neurologist familiar with CIDP and its treatments.[/I]
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January 12, 2010 at 5:14 pm
GaryO Houston]Dear Humph (odd salutation),
[I]Short for Humphrey, what do you want to bet, Gary?[/I] 🙂
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January 13, 2010 at 2:01 am
Thank you everyone for your attention. I have spoken with the sufferer and he has told me that his treatment to date has been as follows (and in this order):
IVIg – 2 x courses of 5 days (10hrs of treatment per day)
Steroid treatment – 3mths of taking a drug called Predonin
IV drip treatment (antibiotics?) – 3 daysNone of the above was successful in halting his symptoms. He has also been prescribed various painkillers (including Gabapentin) with little success.
Plasma Pheresis is a treatment option that his doctor has discussed with him but he has been advised (by said Dr.) that it is so markedly opposed to the above treatments that it could in fact make his condition much worse. His doctor has told him that only 10% of patients respond positively to this treatment…
The sufferer is in contact with other sufferers here in Japan but information and resources are limited.
I have Googled the papers kindly recommended by Rocky36 and made the sufferer aware of the periodical “No to Shinkei” (Brain & Nerves). I have also passed on the kind advice from Gary and Rhonda.
The sufferer tells me he’s had 4 biopsies to correctly diagnose his condition.
Thank you all once again. I will recommend the sufferer ask his doctor whether he (the Dr. or an associate) is a member of this forum and if not then to join.
Oh, and “Humph” is indeed short for my Christian name of Humphrey!
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January 13, 2010 at 11:00 am
Hello Humph,
I just wanted to add that you can also join the UK forum at [url]www.gbs.org.uk[/url]
The people with CIDP will also help you.And, if he wanted to do so, your friends doctor would be welcome to join either our US forum or the forum in the UK and talk to us, the patients.
Also, if your friends doctor contacted our foundation or the foundation in the UK, they might be able to get him in touch with a doctor who has a great deal of experience in treating CIDP. Doctor’s who want to do all they can to help their patients, should also be willing to correspond with each other.
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January 13, 2010 at 2:57 pm
He really needs to find a neuro who knows about CIDP. If it only affects one side of the body it may not be CIDP. AS CIDP affects both sides of the body.
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January 16, 2010 at 5:05 pm
Hi Gary
Your posts are always spot on, concise and clear. What an asset you are 🙂
john
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