GBS or Acute-CIDP ? …begging for treatment
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January 26, 2010 at 12:36 pm
My 63 year old mother was diagnosed with mild GBS in Sept 2009. She was treated with 4 courses of IVIG as she progessively got worse over 8 weeks. Progessions past 8 weeks were not as noticable because she could only blink her eyes but recent EMG/NCS testing showed it got worse because there was zero response (Jan 2010) with severe axonal damage.
She has only been able to blink her eyes for past 4 months and not received any treatment during this time. She has good care but no treatment. We have been patient because everybody (including this site) says that GBS takes along time to improve. Now I believe it is Acute-CIDP and have been begging for treatment. The doctors maintain it is an atypical case of GBS.
Her mind is sharp, all her organs are working fine, she is on a respirator but no extra oxygen is added. She has no underlying health conditions. The prognosis has gone from good to “severe disability and total dependency”.
Any advice for: care, treatment, reinnervation, getting treatment (still working on it)? I know people will be sympathetic so you don’t need to mention it – just looking for answers and information
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January 26, 2010 at 12:51 pm
You are in a very difficult place, that limbo between a dx of the two. We too had the gbs dx at first and then went on to cidp. If the docs agree that the ncv/emg IS worse, have they said why they would NOT do additional ivig, or pp with ivig? While gbs DOES stand for getting better slowly, I would question if it means continually getting worse slowly. You seem to be happy with her current docs and care, I bet if you ask them for the ivig and explain that you feel the ncv/emg is worsening, they would be receptive. At the very least, you have to question them. Good luck.
Dawn Kevies mom -
January 26, 2010 at 2:06 pm
[I]Find another doctor … or doctors. NOW!!![/I]
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January 26, 2010 at 2:24 pm
hi
Rocky is right – no time to be lost
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January 26, 2010 at 6:15 pm
Hi,
I agree with the others, you should probably try a new nuerologist. They should not let her sit there for four months fully paralyzed without any treatment, they should be trying different ones if the IVIG is not working! It took my doctors 10 months to find one that worked for me, but they did not stop trying until they found one. They tried IVIG, oral and IV steroids, plasma pheresis, and when none of those worked and I got to the point of being fully paralyzed on a vent with a feeding tube they tried Cytoxin chemotherapy and it worked for me and reversed my paralysis. If she is getting axonal damage they must treat it now or she will have permanent nerve damage.-
November 17, 2018 at 7:40 am
Hi, can you please share your treatment summary, copy of EMG tests and NCV tests. My mother is in similar condition so want to draw comparison and show it to her treating doctors. Also share the contact details of your treating doctors if possible.
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January 26, 2010 at 7:53 pm
second opinions and decent possible treatments are far cheaper than the conditions she is in now. {Gotta admit, I’m only a bit younger than she is!}
A LOT will depend on where you live tho and whether you are in a city where you CAN get second opinions. IF not, things can and do get more complicated.
My heart is with you and with HER! What she is going thru is NOT FUN! And, it’s tearing at my heart.
I hope you can learn from others here who are far wiser than I.
In the meantime, she will be near my heart. -
January 30, 2010 at 2:48 am
Everyone is right. Sure the doctor’s and even this forum says it takes time, but you know your mom. She is paralyzed. If the treatment given has not taken affect, it’s time for another treatment or a different treatment. I started my IVIG treatment (5 day loading dose) Jan. 11, 2010. I felt awful intil Jan. 25th. That is how long it took for me to feel a difference. I find it hard to beleive that this was the right treatment for your mom if she has not improved a bit! Find another doctor. I’m assuming she is in a hospital. Since I don’t know if the doctor is the “hospitalist neurologist” or not, my best advice would be to go to the nearest medical plaza or the medical arts building attached to the hospital and make an appointment with another neurologist. You can go in as her medical advocate and give them the run down with all her records. maybe the new doctor will have a different idea, or better yet, a sense of urgency. Chances are that the doctor will have privelages at the hospital and can take over your mothers case, no problem……. You are going to have to do this on your own becauase of her frail condition. Do not take no for an answer from any secretary who says the patient has to be present to be seen. You are next of kin, you are now her medical advocate. If she is at home receiving home health care, call your insurance company and request (demand) that she is assinged a case manager (RN). They will walk you through every step you need to take to have your mom cared for. They can even override the first doctors desicion of “waiting” and continue to look for medical treatment for your mom. They will also take care of all the paperwork, referrals, etc…. for you. They are basically social worker’s out to help people get medical attention because they have a medical background. God Bless them……. Mine has been an angel! Good luck.
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January 30, 2010 at 4:27 am
By definition, GBS is acute and the damage stops by four to six weeks. If the damage continues for more than eight weeks, it’s chronic — probably acute-onset CIDP.
Time to find a neurologist who specialises in CIDP.
Deb
London -
November 18, 2018 at 3:30 am
Urgent
can you please share your treatment summary, copy of EMG tests and NCV tests. My mother is in similar condition so want to draw comparison and show it to her treating doctors. Also share the contact details of your treating doctors if possible.
How is your mother condition now and what treatment lead to her recovery from GBS/ CIDP. What Was she finally diagnosed for?? I will really appreciate your response.
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