Feeling defeated and trying to understand, and question what our future looks like

I struggle on how start to write this as I’ve spent countless hours researching about a disease most people have never heard of. My fiancé was first diagnosed at the end of June at Tufts in Boston. This of course was after him being sick since May. It started with his feet and fingertips going numb. He and his primary Dr. thought it was a pinched nerve but after sometime and all the tests still showing nothing and it progressing I started doing my homework. I read about GBS but understood the symptoms are acute. He seems to be progressing slow. At that point when he could no longer walk without holding onto a wall I brought him to Tufts. The neurologist did his exam saw he had no reflexes and asked him to stand with his feet together and close his eyes. He then fell and I jumped up to catch him with the Dr looked at him and was shocked. I was surprised to hear him come back and say you can go home and wait till next month for your appointment to see your neurologist. It has been an uphill battle since. We got the diagnosis after I demanded he have a CT scan and lumbar done that night. When we got the diagnosis I was blown away with the diagnosis. CIDP??? I began to read and wasnt suprised it was related to GBS as I thought it was. From that day forward I haven’t stopped reading everyday, anything, and everything I can get my hands on. Now we have a specialist at St Elizabeth’s I found on the GBS/CIDP foundation website. We started the steroids and I watched him from walking with a cane a month later walking with a walker to not being able to walk at all 2 months later in Aug. The specialist said it was unusual to mainly being only affected sensory wise but now he is showing weakness and slowly disappearing physical, and mentally. We’ve started IVIG and this Sat we start the second treatment. We didn’t see much from the first 5 days of IVIG so now I wonder do people respond after a few treatments?Is this a slow thing that could take several treatments as he only gets them every 3 weeks? I wonder will he be able to walk again? Is he going to regain any of his sensory in his feet and hands? Will he get some strength back? How long do we wait doing IVIG before we ask to start another kind of treatment? I’ve done my research and speaking to these drs they assume I’m in the medical field, so now they want to move him out of hospital and send him to a rehab!!! I try to tell him these people are not on your side. They don’t loose sleep because you can’t walk they want you out because then you are no longer their problem. They need to cut costs and most of the drs don’t know what they are even talking about. Ive lost a lot of trust and faith in Drs, nurses, the whole system. I’m discouraged, feeling lost and alone and watching my one true love BROKENN while our 2 small boys cry for their dad to get better. My 7 yr old prays for his dad to be able to take him to the park when he gets home. How do I break it to them he’s gonna be hrs away from home now and still not better like I promised the drs would do??? I need encouragement and suggestions. Anything would help at this point. Feeling defeated…

Now I find out they want to do IVIG all in one day rather than 5. I think this is because they want him gone in a rehab so he’s not their problem. I’m so scared they will just let him waste away to nothing. Im desperate and praying he responds to IVIG this time!

Hey there,

I completely understand how you are feeling. I thought after my first IVIG treatment I would skip out of the hospital and was depressed when that wasn't the case. I would say I felt a marked improvement after three months of treatment but that is of course different for everyone. I was bed bound in december when I received my first dose and by March I was able to walk with the use of a cane. Now I am two years in and walk unassisted. All of my best wishes that this treatment works! Keeping you in my thoughts!

This sounds very similar to my situation. I too started by noticing numbness and tingling in my hands and feet. a month later, I couldn’t walk. I too had to battle to see a neurologist. And like your fiancée, I was sent home even after he saw that I had no reflexes and couldn’t feel him bending my toes backwards. after two weeks and a round of 5 treatments of plasmapheresis, I was sent to rehab. after about 2 weeks I started feeling not as strong. and ended up being admitted back to the hospital for another round of treatments. after that I was back in rehab and got to the point where I could walk with a walker, eat and dress myself. five days after being sent home, I started feeling weak again and had to get another round of treatments. I have been home since August 11th. I got to where I could walk without my walker and have been able to go back to somewhat normal with a single treatment each week. When the dr. decided to spread my treatments to every 10 days, there was a mix up with scheduling and I ended up being in the ER with bloodclots. That set me back and I had to have 3 treatments in a row to get me back on track. I’m back to walking with the walker till the numbness in my feet lessens again. my hands and feet losing the sensativity I’ve gained is one of my first signs that I need another treatment. If you have any other questions, I will help in any way I can!