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Dr. Rick, MD
Dr. Rick, MD, Board Certified MD
Category: Medical
Satisfied Customers: 11363
Experience:  20+ years as a doctor. Internal Medicine Internship in NYC
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My mother has CIDP and has controlled it for 4 years with

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Hello, My mother has CIDP and has controlled it for 4 years with monthly IVIG treatments (30 grams each treatment).During this time she has consistently walked 1 to 2 miles every day. In October 2012 she missed one treatment and quickly went downhill. She had treatments in November and December but by early January she had deteriorated to the point where she had to be hospitalized because she could not walk or even get out of bed. On Jan 23rd and 24th she was given 2 consecutive treatments of IVIG (50 grams each day). She was also put on Prednisone - 60 mg per day. The IVIG treatment at the higher dose seemed to help and over the following 14 days she began to walk again (with a walker) and walked further each day than the day before. After this, her condition began to slowly weaken again and 4 weeks after the IVIG treatments she was unable to walk again and had to be lifted out of bed. She was given 2 consecutive treatments of 30 grams of IVIG with no improvement. A month later she was given two more treatments of 30 grams of IVIG again with little improvement. We asked her Neurologist why he wouldn't give her 50 grams instead of 30. On April 1st and 2nd she was given 50 grams of IVIG for 2 consecutive days. Now it is April 8th and she is showing some improvement in her hand movement and a little more strength in her legs but she still cannot stand up or walk without assistance. She is still taking 50 mg of Prednisone per day but it seems to have strong side affects (shaking legs and swollen feet). We are looking for the best treatment option for my mother. She was extremely fit and active just a few months ago and now her condition has deteriorated considerably and the treatment she has been receiving has not improved her condition much. She has now been in the hospital for 10 weeks and won't be able to leave until her condition improves. Please help us to find the right treatment for her. Also, do you think that there has been permanent nerve damage while she has been waiting for the right treatment ? Thank youxxxxxxx XXX-XXX-XXXX***@******.***

Good morning. I am online and available to assist you today. Thank you for your patience.
What city is your mother in?
What have her doctors said so far?
This is not an answer, but an Information Request. I need this information to answer your question. Please reply, so I can answer your question. I look forward to helping you.
Customer: replied 4 years ago.


My mother is in Victoria, B.C. Canada.

The doctors here have not said much. This is the main problem. There is not a lot of action by my mother's neurologist and in 10 weeks he has only shown up in her hospital room 4 or 5 times. We feel like she is being neglected and there has been no interaction with the doctor with the family in spite of repeated attempts to contact him.

I am very sorry to hear about your mothers condition. In order to get her better care, and have new doctors consult on her condition and options it would be necessary to have her moved, probably by ambulance.
If you were going to take this drastic and difficult step I would suggest transferring her to a Large University Teaching Hospital. Why a University Teaching Hospital? Because at an institution like that you could be evaluated and treated by a team of sub-specialists who are at the cutting edge of their respective fields. The best thing about these large teaching hospitals is that consultations are available with Professors and leaders in their field by just walking a few steps down the hall.
The Mayo Clinic in Rochester, Minnesota is an excellent example of just such a place as this. That being said there are many excellent teaching hospitals all across the country and I am sure that there is one near you.
As I am a USA based doctor I am not familiar with the large hospitals in your area. That being said you could ask most any of the hospital staff, or even your mothers doctors, for the name of one near you and, perhaps, even a direct physician referral.
Transfers of this kind are fairly common here in my country so I am sure that they are possible in Canada.
It is not right, in my opinion, that her doctor is not responding to your calls.....
Is there anything else you would like to discuss at this point or have all your questions been answered to your satisfaction?
I hope this information was helpful for you. But I do work for tips so I want to make sure you are happy with me before rating me. If you have another question on this or a related issue feel free to fire away. You may also receive an email survey after our chat, if you don’t feel that I have earned a “10” rating in all areas, please let me know what I can do to meet your expectations.
Thanks in advance,
Dr. Rick MD FACS
Customer: replied 4 years ago.

Dr. Rick,

Thanks for your advice. Unfortunately, because my mother is Canadian she wouldn't be eligible for coverage in any U.S. hospitals. Otherwise I would love to take her to the Mayo clinic which is one of the best in the world.

The nearest teaching hospital would be in Vancouver B.C. so that is definitely an option to explore.

One thing I would like to ask you though, is about the IVIG treatment. Since she seemed to respond so well to the IVIG wouldn't it make sense to give her more IVIG treatment ? That is, more frequent treatments. At the moment she is only getting treatments once per month and about 2 weeks after receiving the treatments her condition starts to degrade again. So the first 2 weeks are good and then she goes downhill. Given that, wouldn't it make sense to give her the IVIG every 2 weeks so that she can get back on her feet and out of the hospital? I would think it costs more to keep her in the hospital continuously (she has now been there for 10 weeks) than to give her an extra dose of IVIG every 2 weeks and possibly get her out of the hospital.

Any ideas on possible treatment regimes or her prognosis if she doesn't get proper treatment would be greatly appreciated. I'm afraid there will be permanent nerve damage if she doesn't get proper treatment.



That is an excellent question and, on the surface, since she responded to the IVIG treatment it sounds like more would be better. But, there is just so much IG can do, there are side effects etc so it hard to tell if this is the way to go. With time immunoglobin can loose its effects.
I'm afraid that, due to the limitations of having "chat" as my only diagnostic tool I would not feel comfortable making treatment recommendations for such a serious issue. I just don't have enough data to give you good advice. I'm sure that you can understand this...
I do, however, feel that a move to the Vancouver, B.C. hospital would be the best thing for all involved.
Does this make sense to you?
It's safe for you to press the positive feedback button now if you so desire. And, never fear, even after you press that button I don't go up in a puff of smoke -- I'll still be right here to continue helping you, but, as I do work for tips, I want to make sure you are happy before rating me.
If you have a chance I'd love to hear how things work out.
Take care and have a good evening.
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