CIDP without treatment yet?
AnonymousOctober 11, 2011 at 3:08 am
So I have unfortunately gone from a recovering GBS patient to a CIDP patient….. Luckily I haven’t had to start any treatments yet. So that means I haven’t had IVIG since 2004 with the second GBS attack….. What is the longest anyone has gone without treatment?
AnonymousOctober 11, 2011 at 7:53 am
Why are you waiting to get IVIG?
IVIG should be given as soon as a diagnosis is made so you can start to halt the attack on your body. The best chance to reach any kind of recovery is to start treatment quickly.
My daughter, 10 years old, is now getting IVIG every 5 weeks. That’s the longest she’s gone between treatments since being diagnosed 5 1/2 years ago.
AnonymousOctober 11, 2011 at 7:00 pm
I have to agree with the advice above and throw in the somewhat common caveat- “Follow your Doctor’s advice.”
If you have not been to a Center of Excellence or a neuromuscular specialist, get thee hence.
Do not delay. The damage, while possibly slow moving and unnoticeable, could be progressive, spreading to multiple areas and be irrepairable.
The direct answer to your question? I went 30+ years with no diagnosis and therefore, no treatment.
I do have irrepairable damage.
The determination of how long to go between your GBS IVIG and, do I have this right, it’s been 4 years since your last IVIG? and “NEW” IVIG should be done in consultation with a specialist.
AnonymousNovember 1, 2011 at 11:59 pm
I have deficites that are below my “normal GBS” recovery status from before but still within the normal range, LOW END normal range, with the EMG, NCV, F Wave tests, and some sporadic lumbar punctures which are in the “high” normal but not above.
All these deficites are happening very slowly and I have yet reached any levels, in any tests, that warrant treatments yet…..
I have a great neuro that keeps track of all small symptoms and tests me when any changes occur. Maybe I am just watching a pot of water boil???
AnonymousNovember 2, 2011 at 12:09 am
It is VERY important to start treatment ASAP. There is NO point in waiting for your levels to reach any low point. The faster you start treatment the less damage will be done to your body. The less damage means a better recovery.
You are very lucky to have caught this so early. You may be able to be one of the people that recovers well. If you continue to wait then it may be too late & irreversible damage may be done.
You may consider speaking with your neuro about this.
AnonymousNovember 2, 2011 at 7:41 am
my (previous) neurologist kept me waiting and waiting and waiting and even when my foot really started to drop and the numbness started to spread and my my leg muscles began to atrophy and then atrophy some more, he wanted to wait. he did this for six years. then i went to a new neurologist and his basic response was, i would have started you on ivig … six years ago. don’t wait. seriously. at the very least, go get a second opinion.
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