Reaching out for my husband, who has been in the hospital for 5 weeks.
May 28, 2022 at 10:18 am
I found this forum and am hoping any of you have any recommendations for my husband and I. I am extremely desperate and losing faith that his doctors even know what is wrong with him and how to treat him. I am getting so scared of losing him. He was first diagnosed with Transverse Myelitis, the classic Guillan Barre, then AIDP to CIDP and then Nodal-Paranodal Neuropathy. They say that Nodal Paranodal Neuropathy is an extremely rare form of CIDP and lean more towards this because it’s not bottoming out and seems to be passing the acute phase.
Here is a bit of information:
My husband had a mild case of Covid in January. Shortly after, he began experiencing some urinary issues. Then suddenly in late March, he began experiencing numbness on the bottom of his feet. This progressed up his legs and by Mid-April he needed a cane to walk, which progressed to him needing a walker and by the end of April he couldn’t even use the walker and was finally admitted to the hospital. The Neurologist who he saw wouldn’t admit him at first because he told our primary doctor that he didn’t believe him at first because his Spinal Tap was normal and so was his EMG test.
He finally got admitted to the hospital April 25 and they did a 5 day cycle of methylprednisolone, 1000mg each time. He did see an improvement but then on day 3, they added 5 days of IVIG. When they added this, he immediately began to go downhill. He had adverse side effects but they continued the treatment. The day after he finished the IVIG, the sent him off to an Acute Rehab Hospital. He was there for 10 days and his symptoms worsened every day. At this point he was not able to walk but was able to at least use something called a Sara Stedy to get up with help and the numbness and tingling moved up to his stomach and his hands.
They then decided to send him back to the hospital and start him on another 5 day course of methylprednisolone. Within a day of that, they decided to start Plasmapheresis. After the first day, he was completely bed bound. He was no longer able to get out of bed at all. They gave him 5 treatments, which was 1.5 the amount each treatment. No improvements have been seen from the Plasmapheresis. In fact, it seems that things have gotten worse. He is having crazy twitching ad muscle spasms, severe constipation and they had the put a catheter in him because he was holding on to urine. Yesterday his hemoglobin was 9.8 and he had a severe drop in his blood pressure.
They also decided yesterday, to attempt another steroid cycle, this time by itself, indefinitely, with a tapered effect. 1000mg, 500, 150, then down to oral. They also mentioned potentially giving him Rituximab as a last resort, which scares me.
Sorry for the long introduction but I wanted to be very transparent with everything that is happening. I am so frightened for him and have had to advocate for him every day. He has been in the hospital for 5 weeks now. We live in Los Angeles, CA and he is at a Kaiser Permanente Hospital. I am contemplating getting him to another hospital but that would cost a fortune because it would be out of our insurance and they don’t want to transfer him because they feel they can treat him. But to me, he is declining every day and I’m not sure what to do.
If anyone has had a similiar experience or any advice to offer, I’d greatly appreciate it. I am so saddened and frustrated and am scared for him.
Thanks so much.
May 28, 2022 at 2:00 pm
I’m very sorry to hear about your husband’s condition, this is traumatic for you both.
Kaiser is not known for their expertise with GBS/CIDP or variants. A center of Excellence such as Cedars-Sinai in LA (Richard A. Lewis, MD) would probably not be covered under your insurance plan, but would offer the best diagnosis and treatment for your husband. There is also UCLA and UC Irvine.
Plasmapheresis (which in my opinion does little to treat CIDP) is not the same as Plasma Exchange. Please read about the differences here:
Rituximab is the treatment that put my GBS/CIDP/MFS into remission. You can read more about it, and possible sources of anemia, in the following forum thread:
Here is a brochure with more comprehensive explanations of GBS/CIDP diagnosis and treatment options. It also goes into bladder and bowel related disorders:
May 28, 2022 at 3:09 pm
A little more about PE – The terms Plasmapheresis, Apheresis, and Plasma Exchange (PE) are often used interchangeably; however, they are not the same. Plasmapheresis removes a smaller amount of plasma, usually less than 15% of the patient’s blood volume and therefore does not require replacement of the removed plasma.
PE is the procedure that is performed most commonly for GBS/CIDP. A large volume of plasma (over 60%) is removed from a patient. The volume removed is such that if it were not replaced, significant hypovolemia resulting in vasomotor collapse would occur. As a result, the removed plasma must be replaced with some form of replacement fluid such as albumin. It takes 3-4 PE’s to get out the majority of the antibodies that are responsible for the GBS/CIDP.
When I first underwent PE, I saw the plasma they had removed (I had to ask to see it as they hide it from you). I was astounded by the size of the plastic bag it was captured in, maybe 3 gallons! It was coarse looking and dark, almost black in color. After a number of treatments, the fluid was yellow and transparent.
It should be noted that PE will cancel out IVIg/SCIg and Rituximab. Ig will cancel the effects of PE and seriously reduce the benefit of Rituxan. So, the order of treatments would be important for the best results.
Some of my first-hand experiences with PE may be of interest to those considering it:
June 1, 2022 at 9:46 am
Thank you for your response, Jim. I really appreciate everything you’ve shared. I been trying to get my husband transferred to a hospital that has expertise in this and of course Kaiser doesn’t want to move him. The only thing they’ve done is reach out to the Sunset hospital, to a Dr. Wu to see what he thinks. He suggests starting my husband on Rituximab. You mentioned that it put your CIDP into remission. If you don’t mind sharing how so and how long did it take for you to see any difference?
I plan on starting an appeal with Kaiser today and I will contact Dr. Lewis to see what our options are with Cedar’s. I am so disgusted with Kaiser, their policies and the fact that they have 6 Neurologists but only 2 of them are even close to having the qualifications to treat my husband and because of their weekly rotating policy in the hospital, we can’t have them come and see him. I have to forcefully have the chief of Neurology paged every time I want to speak with him. The doctor on call this week is terrible and is an epilepsy specialist. Why is he examining my husband? He is not a specialist in CIDP. Or as they are saying my husband has what they are calling “treatment resistant CIDP.”
Again, thanks for information. I am hoping I have more success today. I feel like every day I am fighting a battle for my husband and he gets worse and worse every day.
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