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Hi, this is Dr Phil, here to assist you. I am Board Certified with over 10 years of experience. I will respond with my answer shortly. Thank you.
can I help?
No. CIDP refers to one type of peripheral neuropathy. It affects the large fibers, so CIDP is a large fiber neuropathy. But it is a false statement to say that all large fiber neuropathies are CIDP.
CIDP refers to a neuropathy that is caused by a specific underlying cause - autoimmune destruction of the myelin sheath around the nerves. CIDP is actually not one of the more common causes of neuropathy. However, this is one of the neuropathies that can be treated with interventions to modulate the immune response, such as steroids and the IVIG that you have read about.
Most of what she said is accurate. We have already discussed that all you can do is wait and see and that periodic testing is appropriate. This also agrees with what the Cleveland Clinic Neurologist told you. The only statement that is in error is that this would be called CIDP if it progresses to a large fiber neuropathy.
If any of the current weakness was related to a large fiber neuropathy, then it would have been seen on the NCV and EMG, and while there has been a difference of opinion on whether they indicates a radiculopathy, all of them have not shown any evidence of a large fiber neuropathy.
I am not disputing the symptoms. But the studies did not show evidence of a peripheral neuropathy. The changes from carpal tunnel is not evidence of a peripheral neuropathy.
This is true for most chronic medical problems. We never know whether someone with a heart attack ro stroke will have another until time passes. As with all diseases, you can only do what you can do, and then wait to see what happens.
You have to wait however long the symptoms continue.
You do not need God to bring you home. You need God to support you through the Serenity Prayer.
It usually does not. As we discussed, it is only a minority that progress to involve large fibers.
There is no specific time for a nerve to become dead. It can happen immediately, such as with a stroke or a profound crush injury. Or it may take years. The skin biopsy would show whether there is improvement or worsening.
Even when neuropathy progresses, it is rare that it will cause paralysis. It is far more common that it will cause weakened muscle action, not an absence of muscle action.
I am not going to waste my time discussing claims by stem cell companies, for the reasons that we have already discussed. If they are not willing to provide you documentation from the medical literature, then there is no topic for discussion. If they can provide you with any documentation in the medical literature, then I would be glad to review it and discuss it with you.
Yes. I have already told you that there are articles in the medical literature regarding the use of the scrambler for other types of neuropathy, so there is at least a logical argument for its use in idiopathic small fiber neuropathy.
As I said above, if they can provide you with a reference to documentation in the medical literature, then I would be glad to review it and discuss it with you.
That sounds appropriate.
Yes, for the reasons that we previously discussed.
If it is in the medical literature, you only need to give me the reference to the journal.
Information about autoimmune neuropathy is not relevant since you have not been diagnosed with it.
We have already discussed that stem cells for this problem is considered experimental.
This is the essence of why any treatment is considered experimental. Until there is accrual of sufficient evidence to prove that it is effective, it will be considered experimental.
We have already discussed this.
You would have to ask them.
No. I am not going to read their web site, as I told you.
It would be fine to reference studies in the medical literature that were conducted in Europe (or anywhere in the world).
Then go to the Mayo Clinic to be part of their research.
As I have told you, I am not going to read anything that is not in the medical literature.
There is no value in me reading this information. If it is based on studies in the medical literature, then I want to read the medical literature, not some simplified version of it that is intended for laypersons. Any information that is not based on the medical literature only confirms that it is still experimental, which is what I said before.
It does not matter. The history of medicine is replete with examples of early evidence that indicated a trend that turned out to not be true once sufficient data was collected. And when I say not true, not just that it did not help, but also examples in which it was harmful.
That is irrelevant. The issue is whether stem cell treatment has been shown to help this particular medical problem.
An IRB is only used for experimental treatment protocols, so if they are under an IRB, then you will be participating in a research protocol.
No, but the largest single database is at clinicaltrials.gov