I'm new here, and it may take me some time to navigate the site. There has been a lot of negatives these last four months since the bulk of this all began. I've apparently had many symptoms over the last several months that I just ignored or wrote off as something to do with my working so hard and getting old etc. But when I fell in November '12, things rather changed quick fast and in a hurry. Initially, I had Xrays and an MRI that found a bulging disk in my low back, and that along with random attacks of pain in the middle of my back at shoulder blades is about all the real pain I suffer at this point. My hands are beginning to ache, fingers swell. But PAIN pain? That's all I really suffer, that and my fear of the unknown. After my fall, I continued to work because I am my own means of support. I've always been independent and had to keep going... until I couldn't. Woke up the morning of Dec 4th '12 and fell again. I had no feeling at all in my right leg and just went down. Thought I may have just laid wrong and my leg fell asleep. Got back in bed and laid differently and when I got back up to get ready for work, it was still there... or wasn't rather. No feeling in my right leg at all. I could move it... I could wiggle it, but it was like it was someone else's appendage.
I went to my family dr. and she gave me something of a physical, and ordered Norco for my back pain and flexoril and got Xrays, and ordered the MRI. Upon my follow up visit, my dr decided to refer me to a Neurosurgeon specialist. It would be over a month before I could get in to see him. the Neuro looked over my xrays and MRI and did his own office physical, asked many questions and ordered more tests. EEG, CT scan of my head and an EMG. Those tests were another month away and all this time I am off work. Fighting with AFLAC over my coverage was a migrane waiting to happen. They are only giving me partial disability coverage and I signed up for the full disability coverage and thats a fight thats going no where fast and I'm losing the battle. I lost my car because the bank couldn't wait for things to resolve so I could pay them again, and I'm fighting to keep my house. I've applied for assistance where I could, but in the meantime, it's been just waiting, and watching the walls inside my house. Unable to get up and do much of anything because I would fall. So I sat. My right leg began to swell and instead of no feeling, began to change to feeling like it was tightly wrapped with an ace. And my left leg began to feel the same way. Not specifically painful, just really not normal. My only real pain continues to be in my back.
I managed to get the Neuro's tests all done on the same day as I had to travel quite a distance to get them done. And the EEG, and CT scan both came back normal, but the EMG was very NOT normal. I asked that all the test results be sent to both my family Dr. and my Neuro who ordered the tests. ( He is many miles from me and he's not readily accessible to me as my family Dr. ) My family Dr. received the results and ordered some blood tests. About two weeks later, Neuro finally contacts me and tells me he wants more tests done... I told them what my Dr ordered, and they added some more besides. I'm not happy with not being able to just talk to the Neuro Dr. He's yet to set up a follow up apt. Apparently he does not operate that way. He gets the results and directs things to be done accordingly. So I'm really glad that I have everything sent to both dr.'s so I can at least get some answers. This so far since I've been off work has been close to four months now. My FMLA leave is up, and my insurance is up in a few weeks. I of course can pay my premiums to keep my insurance going, but I would have to pay the full price for the BCBS, upwards of 500.00 a month. I don't have that. I am able to keep the premiums up for AFLAC, and until something changes in a program to assist me, thats my only income, and that's iffy from month to month. It doesn't arrive regularly and I can't count on it. So my mood has been very down. Crying daily... all day. I've had to talk to bill collectors, Drs and counselors etc. and I can't do that if I fall apart every time the phone rings. So my Dr. added Xanax to my other meds to help me be able to function. I'm not clinically depressed, I just cry all the time. Fear of the unknown... fear of losing everything I've worked so hard for. Fear of becoming a burden to my children.
To date, I've not undergone any of the different therapies that I've seen others discuss here, I'm still being tested. Monday I go see about the spinal tap. From there I wait some more. I've always been pretty active. My job is a very physical one, and one that I've done for over 30 years in one form or another, and I also fear not being able to go back to that job.
Right now, I can walk. I do better in the house as I don't wear shoes in the house and as much as I can't feel much of anything, I can feel the floor with out shoes. I can feel the cold as I walk on the linoleum. Go figure. But with shoes on, it's like I lose my feet. I have to pay very close attention to where I step and how so I don't lose my balance. Often, even barefooted, it feels like I'm walking on round sponges and if I'm not careful I'll fall off them and hit the floor. Walking outside, balance is a huge issue so I do use a cane and it helps.
I've read that CIDP is not a death sentence, so that is a relief. But in reading over a few of your stories here, I'm learning too, that there are not many similarities. In fact, my EMG Dr. told me that I was going to take some time because this is not a very common desease. And those who have it are all different.
I'm glad to find a place to put this out there, to see if there are any that may have similar symptoms as I. And also to be able to talk about this with others that know what I'm talking about. My family is very supportive and I'm so fortunate to have them. My kids are great and so are my folks, but I've yet to put this out on my Facebook page. I'm not looking for a pity party, and I'm afraid that's just what that would be if I did. So finding this page to be able to speak openly about it, and maybe learn more is a God send for me. Even if no one actually reads all this, just putting it in print so I can see it, and be able to read others' stories is good therapy for me. I'm single and since I'm with out a car, I spend much of my time alone. I've become quite a recluse and keep to myself.
If you have read this far, I thank you. If you'd like to chat, I'd like that. I think I'd like to make friends with people that know the ropes of what this CIDP is. I'm not looking for sympathy here either. Just someone to talk to I guess. I wish you all well in your journey, and maybe in the sharing of information, and actual conversation, we can get through this together.