My problem started sometime in August of 2012 and I was diagnosis with GBS on November 21, 2012, I had a treatment of IVIG on November 27, 2012. At this time I was getting where I could barely get up and walk , I was using a walker, now I am paralyzed from waist down with numbness, tingling in my lower extremities. All of my muscle are gone. I have lost about 30 pounds. My hands are now useless can't hold a bottle of water. I have to depend on my wife for all things. On my follow up on December 28, 2012 the doctor changed diagnosis to CIDP and would like to consult with another specialist. The doctor is has seen this deterioration and ignore it. My wife anger and frustration has to play a part of getting help for me. He has now order another treatment of IVIG on January 16, 2013. Is there still hope for( will I walk again) after this treatment. Has too much time been lost forw long can you go before no treatment works? Will the 2nd treatment to help me. Will the other treatment out there help me if IVIG is not working for me?
Sorry for your CIDP dx. This is the chronic version of GBS.
My understanding of the IVIg treatment is that the initial few
infusions are packed twice weekly until substantial improvement is experienced. Apparently individual treatments, don't really work, it has to be a concentrated therapeutic approach.
This could also be enhanced by another therapy called plasmapharesis.
You blood gets filtered and the antibodies and proteins that are attacking the nerves and myelin get removed from the blood.
Evidence from trials suggests that this therapy provides significant short-term benefit to two thirds of the CIDP patients.
If you think your present Neuro doesn't have much experience, then seek one who is knowledgeable in these types of treatments.
Oh, one more. You may want to look into LDN (low dose Naltrexone)
It has worked for many people, at varying degrees of efficacy, for MS
Parkinson's, Alzheimer's and other diseases. It's worth a shot.
I hope something will work for you soon.
Can too much time be lost for recover . Will more infusion weekly improve this illness and give me back what it has took. I am afraid that time seems to be no factor of the doctor. How long can this go untreated without the right amount of treatments. I live in a city( Oxford, Mississippi) that have no knowledge of this. I am waiting on a call from another doctor.
You're right about doctors' lack of the sense of urgency, when it comes to
patients need for timely treatment, yet when it comes to their own
needs and schedules the rules change drastically.
It's just the way it is.
You need to concentrate though, on what can be done.
These therapies are VERY expensive and uncommon.
And good Neurologists familiar with IVIg and plasmapharesis, are probably a rare breed. I'm not surprised about the lack of knowledge there in this field
The LDN treatment (inexpensive) can take place the moment you can find a doctor willing to sign the script and get a compounding pharmacist to fill it. Naltrexone is an orphan drug, with very little profit potential for pharmaceutical companies and with low dose for off-label use
like for MS, there's 0% interest to pursue it and bring it market, despite its
potential to treat so many serious chronic diseases.
Just do a search for details and if you need info on an LDN friendly Doctor
let me know and I'll pm you a link. He/She might require a telephone consult with you, before you can get a signed script.
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