I guess this is my starting point... How I discovered I have CIDP

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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.

~Sis

hi i have just read your story and found it really intersting and much like my husbands, it is reassuring to read other peoples stories that are similar. my husband got diagnosed about 4 yrs ago after much investigations, he still struggles at times (mentally as well as physically) as he finda it hard to be unable to do all that he wants to, being a carpenter he finds this especially hard. thankyou once again for sharing your story, hope all goes well

Hi Sis, bless your heart! This is a difficult disease to deal with. My husband David was admitted to the hospital 3 weeks ago for 4 days. Test after test after test, we finally got a diagnoses after dealing with this for 2 years of not knowing. David was very active and now it's very hard for him to not even be able to walk. We go back to the Neuro dr on Monday and probably a 5 hour IVIG infusion after that. He has applied for disablity but is still on Workman's Comp but WC is treating to cut him off as they say CIDP is not caused from a back injury, We are finding out Oh yes it is. David has also contacted an attorney. I will keep logging in to see how you are doing Sis. Our prayers are with you. I am also on disablity and I work p/t and come home and help David as much as my body will allow. Hugs dear!

Thank you both for posting here. I have to get up early in the morning to go see about my spinal tap and I'm still awake. It was my understanding that I would be going for the spinal tap in the morning, but when the office called to confirm my appointment, they said no, it was an evaluation appointment to set up the spinal tap? GRRRRR.... I already had the EMG through this dr. who said he could do the spinal tap. He already knows what's going on, he did the diagnosing EMG test, why do I have to make yet another trip down there? Not happy camping at the moment, but I guess I will just have to see what happens when I get down there. Maybe if someone holds my hand I can get up on a desk and kick papers around and get someone's attention? Again, Thank you DB2013, and Linda for leaving comments. I appreciate hearing from you. Have a blessed Monday. ~Sis

Sis, my dear, it astonishes me how similar some of our stories are.The frustrations with getting tests and treatment done quickly and with consideration regarding how sick and difficult it is to get to appointments. My husband has had CIDP for 3 months and other than the Neurologists assessment in December has not had any contact with him. I talk to the office staff about relapses but are told to see the GP. The GP says he knows nothing about this disease and to talk to the Neurologist. My guy cannot stand, walk and has speach difficulties and thought he was dying, he was in so much pain. My best resource has been the CIDP Foundation. A member has assisted me with accessing rehab and offering support. The members of this group are so knowledgeable with practical information. We wish you the best in your tests and treatment and hope your recovery is speedy. Patience and positive thoughts, my friend, M

Well I did have the Spinal Tap today... Still feeling a bit off. Hard to define. Just a bit off. They said to be careful and not over do or drive for 24 hours. Spinal Tap wasn't all that difficult I don't suppose, more time consuming then anything else. Now I just hope that it will give us some answers. Is it, in fact, CIDP? or is it something else? And if it is CIDP, what now? And now? I have to do the waiting game. Next MD appt. isn't til about the 24th of April, but if I'm patient... ( and before this, in most situations, I've always had the patience of a saint! ) Maybe I will know more. Maybe there will be a plan of attack.

Thank you for dropping me a line Madonnart. May I ask where you live? I'm in Michigan, and thus far my MD and Neuro are working together... ( even if it's me pushing that envelope so they will. ) I've insisted that each and every one of my tests go to every Dr. So everyone is on the same page. Now the race is on to see who contacts me with the results first. Anyone want to place a bet? :P My MD is in my home town, My Neuro is based out of Saginaw but makes trips up to Alpena where I have seen him and where I have had the bulk of my testing done. I don't know, if I have to have the infusions, whether it will be in Northern MI or not. But I have a girl friend who has had to have her plasmapherisis ( spell check says this is spelled wrong but it's phonetically readable. ) And this girlfriend said that the only place in MI that a person can get the plasmapherisis is at the U of M Hospital in Ann Arbor.

I'm sorry that your Drs are not being more helpful. Make an appointment with your GP and ask him to refer you to another Neuro who will work with you. Sometimes it takes a push to get things done. If nothing else... make a trip to ER and have them refer you to someone. I am learning that this is rather new to everyone and at this point, I'm sure I'm joining the list of those who generally feel like a lab rat. But along with my patience ... I also wear the virtue of being very persistant. I want answers and I don't take the wishy washy beating around the bush response. My MD is very open with me and if he does not know whats going on, he tells me and he looks for it. And as I also find information, I bring it to him. He appreciates that, along with my insistence that all the reports are also sent to him. Maybe your GP does not have the test results at his disposal. That may be part of the issue. NO MATTER who I see... all of the Drs get ALL the test results. Get copies of all the test results yourself. You have a right to them, and take them with you to all your appts. Above all... don't give up. Keep kickin papers around on the desktop til someone listens and takes you seriously. " Okay...so you don't know, I get that.... now send me to someone who DOES.... TODAY! Good Luck and stay in touch. Thank you again for commenting here.

Glad the ST is done with but the waiting is no fun. I live in Kelowna British Columbia in western Canada. One of the difficulties is that my husband changed GP about 2 months before this happen ended and he has never seen this disease and constantly defers to the Neuro doc who dosn’t take calls. I would like to get a second opinion at our center of excellance in Vancouver but my husband wants to wait until he sees his Neuro for reassessment for Further IVIG. Hope you get news soon, stay strong, M

My Neuro is also aloof and not reachable. I tried to set up a follow up appointment after my first round of testing was done, and the staff there very politely told me that he does not operate that way. He gets the information and then decides from there what is next to be done. At this point, I don't know when or if I will ever see him again personally, face to face. So where he is concerned, I have to wait for him to give us his 2 cents worth. Another reason I'm so glad I insist that all the test results go to all the Doctors involved in my case. And my MD is just up the road from me and he will answer my questions and has a general idea of what's needed next and generally starts the ball rolling, adding more tests before neuro gets around to it. My MD admits that this is rare and new, and that he will be learning from me. But he's willing to learn from me and work with me and give me honest straight forward answers to my questions. He knows full well the impact this is having on my life. ( Basically it's kicking my fanny!) Financially I'm all but screwed. The wonderful insurance I have is going to be gone the 1st of April because I've been off work since Dec 4th and my FMLA leave and my income insurance is done. I've applied just about everywhere I can for assistance, but with my children grown and gone and no dependents, I'm limited as to where I can get help. He understands this and works with me accordingly. I spent the better part of these last four months in tears. Every day watching my life just fall apart at the seams and powerless to stop it from happening is huge to this very proud, very independent woman. I have to talk to Doctors and bill collectors and councilors and I can't do that if I break down in sobs all the time and it was getting to the point that every time the phone rang, it was the trigger to start the waterfall. I'm not depressed as in the clinical sense, I don't want to harm myself or anyone else, but I have to function. And I can't do that if I cry all the time and fall apart when I have to be in charge of my life and take care of important issues. He prescribed me Xanax for Anxiety and it's working. I still have my misty moments, and I imagine I probably always will. But this does help me to keep my emotions in check and empower me to handle what I have to.

This condition, what ever it is, is changing my life and that's huge. And I am alone here in my home, and that is huge too. Brings way too much time to sit and ponder and worry and fret over losing everything both physically and financially. What's ahead of me? What can I do? What can I hope for? What can I do to prevent this from progressing.. if anything? These questions run rampid through my head constantly, as I'm sure it does for many others here as well. And the only thing that I can realistically do, is the best I can with what I have to work with and the rest is in God's hands.

I do make it a point to keep positive thoughts. Everyday, I look for something to be up beat and happy about. Every day, I find a reason to be happy and thankful. Every day I look for the bright side... Find my happy place. If you ever just want to talk, about anything. I'm also a very good listener/reader. Drop me a line and let me know what's going on in your life. Tell me about a your family, things you like to do. Hobbies? Activities that make you happy? Maybe talking about other things can be therapeutic too. Just to distract us from the negative for a while. Thank you for responding here. I'd like to add you as a friend, but I can't seem to find the link to do that. If you can and you would like to... feel free to add me. Have a wonderful night. ~ Tammy

I’m not sure how to add you as a friend either but standby while I figure it out. Amazing to me how we all survive this new normal life CIDP has thrown us into. We just put a line of credit on our house to help pay for medical treatments not covered by our system. My background is healthcare, old nurse,thank goodness us old nurses still remember bedside nursing which is what my guy needs at present. If only the body was a bit more bendy. I had a total shoulder replacement with a donar bicep muscle and tendon transplant the day before my husband collapsed. I think it is true that time cures all wounds because I can barely remember that month and I bet it was hell. We live in the Okabagan valley, wine country , on a huge lake called Lake Okanagan. It is a resort area, beach in summer, ski hill…Big White in winter. I am an Artist…Madonnart…jewelry and water colors. Haven’t been able to do much for the last 3 months because of my surgery and Dave’s needs. Art is my my passion and I have painted since I could hold a crayon.it has saved me from depressions, saved my husband from a violent death more times than I can count. Are you in a small community, rural area or large city? Worry about bills, losing independence and the uncertainty of this disease is a huge burden more so when your family are a distance away. Keep in touch Tammy, my prayers and good energy is sent your way, keep strong…Marg

Hello everyone, David had another IVIG infusion yesterday at the hospital. Our Neurologist ordered a different IVIG as the first 5 infusions made his break out in hives. He'll get 1 infusion every other week for the next 3 weeks and then 1 infusion a month for the next 6 months. We met with a WC attorney this week and he is going to take our case. WC wrote a letter to us asking if we could ask for genertic brand of medications and Infusion. I said NO...

Have a great Easter weekend and you are in our prayers. Sis, Madonna, Linda!

I was diagnosed January 4th of this year. I went for my spinal tap on New Years eve and had an answer on the 4th. The waiting and not knowing is the worst part in the beginning, now that I know what I have I am in better spirits, but still get down from time to time because I cannot do my normal activities. I am a real estate agent and its hard when you are with a customer and can hardly pick up your feet sometimes. I started my IVIG at the end of January, had 3 treatments back to back and now just one treatment a month until July, we will re-evaluate in July to see if this is helping or if we need to try other options. So far, I do notice I am walking a little better and my balance has gotten better, but my legs and feet still get tired quickly and my feet still go numb at night and you're right, feels like a tight ace bandage is wrapped around them. I dont understand why that only happens at night, but Im also glad that they feel somewhat normal during the day so I can work.

After reading some of the complaints about the neuro's, I realize now how thankful I am to have the doctor I have. He has been on top of this and has not wasted any time ordering tests and scheduling my appointments. I have been lucky enough to get calls within days letting me know all results to my tests I have had done. The only time they have slipped up is last month my doctor wanted me to get a bone scan to check for multiple myeloma and the receptionist never scheduled it. I have quietly sat back and kept my mouth shut because everything else has come back normal, Im sure Im ok and have nothing else, keeping fingers crossed and knocking on wood.

As far as insurance, I applied with Humana and was declined due to a pre-existing cause, at that time we thought I just had sciatica. I googled Obamacare and found a website where I could get insurance guaranteed. Try it out, its not cheap, I pay $249/mth, but its better than $500 or more. I've been told that the IVIG runs about $1000 per gram and I get 37 grams of it each treatment, out of my pocket I only pay $166, its still not cheap, but without that insurance I would have no choice but to give everything up and just plan a life in a wheelchair. Keep your head up and things will work out, we are all here for each other. You can find me on facebook under Stacey Turley Dematos if you would like to friend me and keep in contact that way as well.

hi Sis, I hope to communicate more with you. Your story sounds much like mine. I was diagnosed with CIDp in 2010.

I am not real sure about this blogging business and will write more after I know I have been successful in this attempt.