Differences between GBS, CIDP & SIDP – Communicator: Summer 2006
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July 16, 2006 at 9:03 pm
Hi friends,
I am sure that many of you have by now got your Summer 2006 Communicator. Page 4 : [I][FONT=Arial]What’s In a Name? Important Differences Between GBS, CIDP and Related Disorders[/FONT][/I].
To quote from [B]part[/B] of the article:
[I][QUOTE]
[I]A less well-appreciated disorder is subacute demyelinating polyneuropathy (SIDP). SIDP is defined by a progression of symptoms for more than 4 weeks but less then 8 weeks. In other words, the time frame falls in between that of GBS and CIDP. This is an uncommon but interesting group of patients. It is necessary to identify these patients because there can be important considerations regarding their treatment (see below). [/I]
[/QUOTE][/I]It then goes on to describe how GBS and CIDP are typically treated[I], [/I]and then comes to this paragraph….
[I][QUOTE]
[I]Finally, we come to SIDP. Treatment is usually as for GBS: a single course of IVIG or PE.This will be sufficient for many of these patients. However, some SIDP patients are actually CIDP patients who got treated before they could declare themselves by progressing for 8 or more weeks. If they are not watched closely, patients with SIDP can quickly deteriorate. These patients will need more sustained treatment, as in the case for CIDP.[/I]
[/QUOTE][/I]I just thought that it was interesting since I had never heard of SIDP before, (Im sure that many of you have tho) and I was curious as to how many people in our little community actually fall into this group whithout themselves or their doctors realizing it?
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July 16, 2006 at 10:00 pm
Very interesting Ali, in all of the reading I have done I have never heard of it, definetely not by that name anyway.
Jer
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July 17, 2006 at 1:09 am
hi alison,
like jerimy this is the first i’ve heard of sidp by any name. took me 6 weeks to plateau, so i guess i’m a sidper. i think i am also spider man in another of our parallel worlds – lol. take care. be well.
gene gbs 8-99
in numbers there is strength -
July 17, 2006 at 7:58 am
Hi,
If the patient and the doctor wern’t aware then, those two still aren’t aware today. Was the onset time really these diseases, or the trigger of these diseases, you felt long before the big hit? As I’ve stated for a long time, one of the reasons getting a true diagnoses had quickly, is we all go in with 2 seperate issues, right? Are you feeling the trigger weeks before, and might be why a lot of us didn’t take action, then felt something else tell us to hit the ER stat? We go in now, and combine those two, describing symptons. Then again, those cases that took more then one treatment to halt progression, might be the better group to ask this question of.
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July 17, 2006 at 9:58 am
What I noticed in that article was that there was no mention at all of CIDP variants like the antiMAG IgM variant I have. Doctors should be aware of that because there are differences in symptoms, speed of progression and most importantly effectiveness of treatments. Symptoms are primarily sensory and not so much motor, there usually is no pain. Progression is usually very slow – often over many years – probably depending on the amount of aberrant antibodies. I just saw yesterday some statistics showing that there are patients who compared to me have 10 times the number of antiMAG antibodies. IVIG, PP and steroid treatments are not very effective.
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July 17, 2006 at 9:05 pm
Hi Ali,
Thanks for the info. I hadn’t heard of SIDP but I may fall into that category. I was at 6 weeks and still deteriorating (more than 4 but less than 8) when I was finally diagnosed with GBS and given a 5-day treatment in less than 3 days. I responded immediately. Over the last two months though I have noticed the tingling in arms/legs has gradually worsened. Still not sure if it is related to stress (moving etc.) or something else. I am kind of keeping an eye on things and will seek out a new neuro here in NM if it seems to worsen. Still no worsening in balance or strength so I am keeping my fingers crossed that it is simply a stress related residual symptom.
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July 18, 2006 at 12:13 am
I have never heard of SIDP. I was going to have a read of the communicator article but it is not on the website yet. Living in Australia i don’t get a copy. Could anyone email me a scanned copy? My email address is [email]squid_jasper@yahoo.com.au[/email]
Thanks in advance.
Debbie
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July 18, 2006 at 7:40 am
debbie,
if you signed up as a member of gbsfi [being on this forum doesn’t count], you should get a copy no matter where in the world you live. take care. be well.
gene gbs 8-99
in numbers there is strength -
July 18, 2006 at 8:55 pm
Debbie, do you still need a copy of the article? if so let me know, i’ll send one.:)
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July 19, 2006 at 2:19 am
Yes a copy would be great. I will sign up as a member like Gene suggested. I didn’t know you could.
Thanks
Debbie -
July 19, 2006 at 2:25 am
Thanks Gene. I have registered and should now be on the mailing list.
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July 19, 2006 at 9:54 am
Yesterday I reread the article and one of the important differences between GBS and CIDP finally sank in. Of course, I know about the acute onset of GBS and the seriousness of symptoms for many patients but I never understood why in GBS often symptoms would hang on for months or even years and it still would not be considered chronic and not the same as CIDP. The important difference is [B]persistence [/B]in GBS but [B]progression[/B] in CIDP. In GBS the bad antibodies are gone but the damage to the nerves has been done. Symptoms caused by nerve damage continue to exist until and if nerves regrow. They are persistent. In CIDP the bad antibodies don’t go away and continue to do damage finding new areas to attack. Symptoms continue to worsen. They are progressive. For some they remit only to come back.
Sorry if I am being redundant and am saying what you already know. But I had to write it to get it clear in my head.
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July 19, 2006 at 5:30 pm
Norb,
Not redundant at all, in fact thats actually the best way I’ve heard it explained.
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July 19, 2006 at 6:08 pm
Thanks, Ali. I am glad I was being clear. What I am still trying to find an answer to is the question why a triggering event – infection or whatever – results in GBS in some people and CIDP in others. :confused:
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July 20, 2006 at 10:40 pm
Dear Kathryn
Been meaning to see if everything is ok, and the move went well. Did you get a new Communicator in the mail at your new place?
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July 24, 2006 at 2:09 pm
Alison,
No I did not get the communicator. I will have to ask them to send me another one if it does not get forwarded.
The move went well. Still not in our house yet but we sign for it on 4 Aug. I have to leave for a business trip on 5 Aug so we won’t get our household goods until after the 14th. Ho hum…
On the plus side – the view out our back yard is breath-taking and I love the fact that there is practically no humidity which keeps the pain in my hands and feet to a minimum.
How are you doing? I hope things are improving and the fatigue is not as bad.
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