December 3, 2018 at 9:59 pm #116176
My husband, 38 years old, was diagnosed with atypical GBS. He woke me up September 27th early in the morning saying his mouth, nose, and throat was numb. We went to a local ER where a CT scan was done and sent home with a sinus infection diagnosis. The next day he was getting progressively worse so we went to a different ER where the doctor done a spinal tap and various other test. The doctor said my husband was a puzzle that he wanted to fix and admitted him to the ICU. I credit this dr for saving my husband’s life because he would have been sent home misdiagnosed again and who knows what would have happened. He was admitted to the ICU on the 28th and placed on a ventilator the 29th. At first they thought it was something related to his blood pressure, it was sky high, but then he started to lose his coordination in his arms and hands. He couldn’t move his legs or feet and that’s when they said its not his blood pressure it’s something else. The neurologist tested him for GBS, Masthenia Gravis, West Nile, and Botulism. My husband had a tetanus shot 2 weeks prior to the onset of symptoms. He received 4 treatments of IVIG which did not seem to make him any better. They transfered him to a different hospital for plasmapheresis which helped him tremendously. He was paralyzed from the neck down and after the plasmapheresis he was able to move his arms. He had the trach and peg tube placed after about 3 weeks of being ventilated. He was then sent to long term acute care. He has been weaned off the ventilator and is only on oxygen now. He can talk, can eat with no restrictions, and is gaining more strength every day in his arms and hands. His peg tube has been blown out 3 times. The 2nd time it happened, when it was replaced they gave him fentanyl for pain and he had a terrible reaction to it. He was out for 4 days. He had terrible nightmares and hallucinations. He was able to wiggle his toes before this and now he can not. I have a hard time getting any therapy to come and work with him. They come once a week for about 20 minutes. I watch what they do and try to replicate what they do and work with him everyday. They have also changed his doctor and I did not know about the change until 5 days later. He has been in LTAC for a little over a month now and they are now talking to me about sending him to a skilled nursing facility. I was originally told we should send him to a inpatient rehabilitation center but now they tell me he is not strong enough for one. Is it normal for patients to go to a skilled nursing facility first then a rehab facility? I feel like they are trying to get rid of him because they know his insurance will run out next month. That may not be the case and I maybe overthinking it, but I feel like all the doctors and the case manager are being very vague with me. Can Inrefuse him being moved? Has anyone else lost what little movement they had and eventually regained it? Also, he sleeps a lot, is this normal as well?December 3, 2018 at 11:40 pm #116177
Your husband’s condition is similar to mine. It’s good that Plasma Exchange (PE) has helped him, IVIg never did anything for me, except hurt my pocketbook lol!
I was put into a rehab program after the first month of contracting the disease. It was a waste of time and money for me, nothing was accomplished, I was still paralyzed and hospitalized. Then they gave me PE, that caused me to start to recover. Unfortunately for me, PE came too late. After 3 months of suffering, I had severe Myelin and Axonal damage. I’m convinced I would still be walking today had they given me PE at the beginning.
I have regained some of the movement and sensations I had lost. It took several Rituximab treatments to help my body rebuild some of what GBS/CIDP took away.
Your husband should continue the PE. I had about 50 PE treatments in total over a 6-9-month period. A “port” is the way to go for PE! PE helped put me in remission. I wish it and the Rituximab would have repaired me, but it seems I have permanently lost functionality.
Keep up the treatments and look into HSCT. Your husband is young enough that HSCT may work for him, if you can afford it!December 4, 2018 at 9:43 am #116178
I slept a lot in the hospital and rehab. I think it would be perfectly normal and even encouraged to sleep/rest as much as possible considering what we endure at onset and beyond.
If you think he’s sleeping too much or too hard (for him), ask the doctors/nurses if any medications have drowsiness as side effects. After I went home it took me two weeks to realize that I was way too tired. I felt good and wanted to do stuff (within reason), but I couldn’t stay alert very long and felt fogged up. The allergy meds they prescribed were ones I’d had trouble with earlier in life. (Sleep driving on Benadryl) I was just too worn out from the GBS to remember that kind of thing. Another med made me gain a lot of weight very quickly, messing up “everything”. (a lot= 50+++ lbs)December 4, 2018 at 12:05 pm #116179
Thank you for the replies. I asked his doctor today if doing more plasmapheresis would be beneficial and he said he did not think so because my husband received it already. The doctor kept looking at his watch like he was in a hurry and wanted to be anywhere but here in my husband’s room. I told him I have read numerous accounts where people are years out of recovery and still have the plasma treatments and he said he would look into it. I dont think he will. At this point I think they just want to get him out of here and into a nursing home. I’m worried a nursing home is not the right place for him therapy wise. I think he needs an inpatient rehabilitation center but they wont listen to me. It’s getting very frustrating. My husband was over medicated this past week. He slept for almost 48 hours and we could not wake him up even to eat. He is now on pain meds as needed and he is doing better now than he has been. He is more clear headed as well. He sleeps now but it’s more if a nap than a deep sleep. He does not have a neurologist either. Should he have one? He had one at the other hospitals but never here in LTAC.December 4, 2018 at 4:24 pm #116180
Ashlee, Your husband’s chances for a better recovery would be greatly improved if a Neurologist experienced with CIDP or peripheral neuropathies were involved. Perhaps we could recommend one if you could give us your city.
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.December 15, 2018 at 12:12 pm #116187
I was diagnosed with AMAN 13 months ago at the age of 71 while traveling in Spain. The spanish doctor started me with an IVIG treatment that very night. I lost the use of my legs and arms overnight but I believe the IVIG treatment kept the disease from my lungs. After two weeks I was transferred to the states and was retested again with the same diagnosis; AMAN! My insurance company and doctor put me in a rehab center and I was told I was a hopeless case. I laid in the bed for 3 months with very little PT. Thankfully my wife and kids researched AMAN and talk to Doctors throughout the country. All said that another IVIG or PE would not help; the only thing to do was PT and OT as often as possible. As of today I can walk with a walker, feed myself, shave, bath, etc. I still have PT 2-3 times a week. My legs are still weak as are my hands but getting stronger. MY suggestion is PT/OT and because you are much younger your recovery should be much faster. There is a lot of info on the internet about GBS/AMAN. You will make it through this.
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