New Diagnosis
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March 7, 2011 at 10:04 am
Hello,
I have been reading this forum and so appreciate all the info and thought it time to post myself. I was just diagnosed with CIDP by my nuerologist last week based on my initial symptoms that started about 8 months ago (tingling and numbness in hands and feet, muscel weakness) and after an EMG/Nerve Study, Spinal Tap and tons of blood work. Noticing my symptoms are getting slowly worse. Very hard to get up and down the steps in my home, especially holding my one year old. Was doing Dance Party on Wii with my six year old and can’t jump. I am schedule to go in next week to see my doctor to discuss treatment options and need some help.
What questions should I ask?
Seems like steroids and autoimmune drugs are so scarey with lots of side effects. IVIG seems like the best option but does insurance cover it? I have Anthem. Do you have to go into the hospital to get it done? I have three young children so I am trying to find out what options are the best knowing I have little time to rest:)
I just don’t want this to get any worse and would love to get back to my normal self. Thanks!
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March 7, 2011 at 10:23 am
good morning jpl, i am sorry to hear of ur dx, but there will be some releif in knowing what it is especially after so long, my daughter was dx in 06 at age 11, i know a little different in age but wanted to tell u she is on ivig only and was doing very well and went into remission for a year though it came back but we knew what to look for now she is now almost 16 to answer ur ? in the beginning it was done in the hospital 4 a couple month to monitor how ur body does with it but now she has a nurse come to the house 2 days a month, i would suggest u contact ur ins co. and ask about home nursing and what it covers at first we used a iv pole but was to immobilizing so they have a pump so it allows u to go on with ur day as u are getting infused every ins company is different u will also be evalutated by a physical therapist to help regain some of ur stregnth back if u look at my daughter u would never know u will get there to as she had the same troubles u are having she used to have to crawl on all fours to get up the stairs now she doesnt well i hope this helps good luck at ur next appointment 🙂 terri
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March 7, 2011 at 12:56 pm
hi.
i sent you a private message -
March 7, 2011 at 2:41 pm
Thank you for responding. I am just so new to this, don’t know which end is up. Hopefully will have some answers soon from my DR. I don’t know if she has ever even treated anyone with this but my guess is since it is rare, maybe not. I did call my insurance company and they said they couldn’t confirm IVIG was covered until they had a procedure code, whatever that is. Guess I will need to have my doctor make sure it is covered if that is the route I take. Nothing is ever easy is it:)
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March 10, 2011 at 3:10 pm
I am very sorry to hear of your diagnosis. One of the things I have discovered is that many neurologists simply don’t know much about CIDP. There are 7 (as far as I know) Centers of Excellence. From my experience, they have the expertise not only for accurate diagnosis, but for guidance with respect to treatment and care. I strongly urge you to visit one of them to get your treatment started in the best possible way, which will hopefully give you the best possible chance to arrest and perhaps recover from this disease. CIDP, as well as the treatments for it, affect each person very differently. IVIG is considered by many to be the first course or treatment, but of late there appear to have been ever-increasing issues with health insurance paying for it. It does have far fewer adverse effects than other treatments. You should ask about both short and long term prognosis, and the pros and cons of each treatment option. Something as simple as “should I have my IVIG infusion in the hospital or at home” is an important question. I chose to have mine at the hospital because the hospital was Johns Hopkins, they are uniquely and expertly equipped to do the infusions, skilled medical staff was available in the event of any problems (I experienced none) and the hospital was only a 30 minute drive. Had it been a 2 hour drive, my choice might have been different. A good doctor will take plenty of time to talk with you and answer your questions. I always went with a list of questions, and kept a log which I called “things better, things worse.” It helped me to recall details of the ups and downs of my illness and, I would like to believe, helped the doctor tailor my treatment. No question is too basic or too foolish to ask. After all, you are the one who is sick, and it is both reasonable and desirable to know as much about this disease and your treatment as possible. My prayers are with you in your quest to beat this monster!
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New Diagnosis
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May 26, 2009 at 12:44 pm
Received a little shock recently. I was diagnosed with CIDP in early 2006 after being seen by the neurologists at the Colorado University Medical Center and my local neurologist in Colorado Springs. Since that time I have received IVIG treatments on schedules ranging from 3 times every 3 weeks to the same every 12 weeks. I also had prednisone occasionally. Although my hands and feet are numb I have made some improvements(I walk with a cane, no longer require a wheelchair). Late last year my neurologist and I discussed my getting a second opinion and he arranged this with Dr Richard J Barohn at the Kansas University Medical Center, a well known expert in the field of peripheral neuropathy. Imagine my surprise when the new diagnosis was sensory neuronopathy (sensory ganglionopathy), a typical presentation for dorsal root ganglion CELL BODY disease, no demyelination involved. At least the treatment is practically the same. (I also have MGUS and have been followed by a haematologist for 3 1/2 years). The KUMC also is looking for other possible causes of my sensory ataxia. Guess I should have had the biopsy! Morris
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May 26, 2009 at 12:53 pm
I have had five different neurologists diagnose me with CIDP, ideopathic polyneuropathy, chronic fatigue syndrome, etc. All of the nuerologist except one recommended IV/IG despite the differring diagnosis. It seems that there is a spectrum of symptoms and clinical evidence and not one clear dividing line between the different diagnosis. I am hopeful because the treatment recommendations are similiar.
good luck,
duane
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May 26, 2009 at 9:35 pm
What tests did they do to come up with the new diagnosis? Did they feel the MGUS has anything to do with your neuropathy? What type of MGUS do you have? I have neuropathy and IGG MGUS and am still wondering if they are linked.
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May 27, 2009 at 7:07 am
I think a nerve biopsy might be a good idea. Might give them more answers as to what is causing this CIDP problem. But glad the treatments are basically the same. But then again if the treatments aren’t working then that would not be good! Hope they get you on your feet and feeling better! Hugs
Linda H -
May 27, 2009 at 4:49 pm
I am going to attempt to answer your questions Iowagal:
When my wife recognized that this disease was going to be a long term problem she began to maintain a diary of every incident that occured since the beginning. We were able to condense this into a document that provided the doctor with a good history of my problem. We also had copies on discs of every MRI, CT scan, bone marrow biopsy, spinal tap, etc. that I had undergone over the past 3 1/2 years. Dr Barohn studied these and spent 80 minutes questioning and examining me. I have never had such a complete, professional exam and it was given in a friendly, relaxing atmosphere. That afternoon I was give a nerve conduction and needle EMG. 12 vials of blood were taken. Dr Barohn had told me before this that he thought I had a neuronopathy rather than CIDP. He forwarded his report to my neurologist who explained it to me a week later.
The report also said I had IgG MGUS but what role this had with regard to sensory neuronopathy is unknown. It might simply reflect the response of immune system that is causing the neuronopathy.
I apologize for this lengthy reply and hope I answered some of your questions in the space available. Thank you. Morris -
May 27, 2009 at 9:40 pm
Thank you, Morris! Did you originally have a sudden onset of symptoms or has this been a gradual process for you?
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May 29, 2009 at 9:32 pm
It started in Sept 05 with severe itching in my left arm, by the middle of Oct my ring and little finger on that hand were, diagnosed as cubital tunnel syndrome-(cortisone shot and sling.) By mid-Nov it had moved into my back as severe pain and numbness in left foot. In Dec both my right hand and foot were involved(numbness and pain). Through the first four months of 2006 it continued to get worse and by summer I was using a wheel chair for transportation and opiates for pain. IVIG and prednisone have improved my condition so that I can move around fairly well with a cane and even though my hands and feet are numb I manage quite well. My proprioception is greatly decreased and I suffer from ataxia. Thanks. Morris
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New diagnosis
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January 29, 2008 at 12:09 pm
Me again. Well, my mom went for her second opinion to IU med center and seen Dr Kincaid (and he was wonderful). He was very helpful and knowledgeable. He did give her a Diagnosis of sensory GBS. Has anyone here heard about it? He explained it very well and it describes her exactly. I was just wanting to see if anyone new anything about this. Thanks
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January 29, 2008 at 2:20 pm
When you get a dx it takes so much weight off your shoulders! I am glad she found someone she can communicate with and ask questions.
I have a suggestion that might help. Keep using just one thread and all your information will be together so everyone will know her background which can help us with our responses.
As you can see I have GBS and the Miller Fisher varient. There is alot of different terms they use to discribe our illness. Sorry I can not be of help but others will add their knowledge.
Be patient and very supportive that will help your Mom recover. Make sure she rests often. We depend and don’t give our caregivers enough credit in life. I am sure you are frustrated and scared too!
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January 30, 2008 at 2:47 am
Hi hd, do you mean the type were it affects the touch sense? I can’t feel my skin, for instance temperature, cuts, pinpokes etc, but I can now feel things from the inside out. Please make sure she doesn’t overdo things, can cause more problems if the body is rushed to recover-it just doesn’t work like that. Take care.
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