Heading (Hopefully) to Remission
AnonymousApril 19, 2012 at 12:22 pm
Saw my neuro in NYC yesterday. Underwent the most painful EMG I have ever had, and I’ve had a fair number of them. Anyway, I’ve been off IVIG since January and am pretty stable. Have to go back in 3 months for another EMG (!) and follow-up. My neuro told me that people who are stable without IVIG for six weeks have a 50% chance of staying off, and that % increases by 50% each six weeks. After a year off, I would be considered to be in remission.
April 19, 2012 at 1:37 pm
that is interesting info about the ivig Goodney. How did your Dr know when to take you off the ivig? did you stay on it until you got better or until you didnt get any worse? Did you get back to how you were “pre-cidp” before stopping the ivig? good luck with your remission 🙂 did your emg/ncv show improvement?
April 19, 2012 at 2:19 pm
Awesome news Goodney. We will say a prayer for you!! We are going to try again in the summer, once school is out and wisdom teeth are pulled (the aneasthetic makes me nervous, will ask for twighlight) Just curious, when we did the weaning off, we started with 10g/month reductions till at zero, is your doc weaning you off? Or is he just stopping everything? I just wish we could have a normal teenage life, no ivig. Please keep us posted with your updates!! I am so happy for you, January is a long time, that is two, almost three full cycles if considering 42 days as a full life. Your news is encoutaging!
April 19, 2012 at 3:47 pm
THat is great news!!!! Hope things continue looking up!!! I”m also curious of Lori’s and Dawn’s questions!!! So glad to hear good news!
AnonymousApril 19, 2012 at 3:55 pm
Well Goodney looks like you have this sight buzzing. Great to hear of your results. I too have questions. What symptoms or lack of symptoms triggered your neuro to stop the ivig. What got better to make him stop it? My neuro has started me back on once a month ivig due to a non responsive reflex test and non progressing conduction test. Did a positive emg cause your neuro to stop the ivig? How are your non voluntary reflexes? You’re giving us hope!
AnonymousApril 20, 2012 at 12:29 am
Wow, I am surprised at the interest this has generated, so let me tell you how I got to where I am now.
I was stricken with significant CIDP symptoms in 2009. For a number of years previously I had noticed numbness, tingling, and pain in my legs and feet which was intermittent, and which I attributed to lumbar issues. I also noticed my hands were becoming increasingly clumsier, as I was dropping things more and more. In May of 2009 my left foot when numb. Then, I awoke one night with what felt like electric shocks coursing down my arms and legs. It was weird, but it went away pretty quickly, so I didn’t give it much thought. Within a few days later I was at work, when I noticed that my legs were extremely numb and painful. I went to the ER and was worked up for a stroke. I was told I had bulging disks in my neck. I went to a neurosurgeon who referred me to physical therapy. The left foot numbness went away after a week or so.
I did pretty well for a number of months, and everything seemed to blow over. Then in November of 2009 I started to not feel well. I could tell something was wrong, but just attributed it to stress. My low back really began to act up, and my left foot went numb again. In December of 2009 my right foot went numb. I was scheduled to see a physiatrist for my back, and he decided to do an EMG, as he thought my foot numbness was as a result of a lumbar problem On December 31, 2009 I underwent the EMG, and the physiatrist was shocked to discover significant damage to my peripheral nerves. He advised me to see my family doctor as soon as possible.
Through January of 2010 I was worked up thoroughly by my family doctor, who admitted after all the testing that he did not have a clue as to what my condition was, and advised me to see a neurologist as soon as possible. By this time I was really suffering horrible pain in my lower legs and feet. I was lucky enough to get an appointment with Dr. Norman Latov, director of the Peripheral Neuropathy Clinic at Weill Cornell Medical College in Manhattan. I saw Dr. Latov in February of 2010. He ordered extensive blood testing (including genetic testing) and I underwent another EMG at the clinic. He immediately diagnosed me with a demyelinating polyneuropathy, but we had to wait until the genetic test results were completed in April of 2010 for him to be certain it was CIDP.
Dr. Latov recommended IVIG, and in April of 2010 I was started on 40mg every two weeks, with a four day loading dose to begin. As time went by, the dosage was bumped up to 60g and then 80g every two weeks due to my weight (260 lbs), and my ongoing symptoms. The IVIG helped immediately with my pain and other symptoms, but I did have flares, especially at the beginning. Once we went up to 80g every two weeks, my symptoms were pretty well controlled.
Over time, I began to show improvement in both my function, and my EMG test results. Dr. Latov told me that we would continue the IVIG therapy until I plateaued, at which point he would stop the IVIG entirely to see if the improvement could be maintained. That point was reached in January of this year. My last infusion was January 9th.
I am not cured, and will never be healed. CIDP damaged my nerves permanently. I have no sensation in my right foot at all. I have little in the left. I suffer with ongoing, intermittent pain, numbness, and tingling in my legs and feet. My hands are still clumsy. I still take 450mg of Lyrica daily for my pain. My EMG/NCV testing yesterday shows that I have severe demyelinization in my legs and feet, and mild in my arms. But, my strength is intact. My motor nerves are intact. My neuropathy is stable. And I am off IVIG. I will not be able to return to who I was before CIDP. But I am able to walk, I am able to work, I am able to exercise, and I am able to do almost anything I want. And I figure that’s as good as it gets with this disease. I know this is a long post (the longest I’ve ever written by far), and I hope it is helpful and gives some hope. God bless all of you who suffer with CIDP.
April 20, 2012 at 2:22 am
It’s good to read that you are looking at the positive side. I don’t think you should give up hope on further improvement. This can take a long time. I thought my hands had reached maximum recovery, as I no longer notice any improvement. But a friend who hadn’t seen me in a few months told me they looked better. In any case, one must do the best with what one has. I, too, can do almost anything I want or need to do, and that’s the main thing.
April 20, 2012 at 11:37 am
Thank you for sharing- I was diagnosed in 2008 and am in the process of slowly weaning down ivig dose ( currently on every 10 days) next step every 2 weeks. Spent last night in bed with terrible migraine after IVIG yesterday and would love to be free of it! I am also on an immunosupressant ( imuran) – Did they try any immune suppressants in your case? Keeping fingers and toes crossed for you!
AnonymousApril 20, 2012 at 8:06 pm
Thanks for all the well wishes. When I was first diagnosed with CIDP, it sometimes felt like this forum was all I had to comfort and sustain me. Yes, I could talk to family members, but no one understood what I was going through like the people here. Shellbones, I never was on any immunosuppressants. IVIG and Lyrica were my mainstays.
AnonymousApril 22, 2012 at 6:42 pm
This is wonderful. I know you are feeling good about the possibility of being able to stop your infusions.
I was told by the neurosurgeons I needed two major back surgeries but it was the wrong diagnosis. I happened to go to a neurologist for a consultation about the surgeries and it turned out I had CIDP.
I am in the process of trying to reduce my infusions. I’ve had 6 a month for 7 years and think it’s time to see again how I feel with less. When I was fighting my insurance company about IVIG coverage I went 5 weeks without one and did OK. Maybe it was a blessing in disguise? My concern is the profound nerve pain and exhaustion but I can always rive up my infusion schedule again if these two problems flare.
Keep us abreast of how you are.
AnonymousApril 22, 2012 at 10:15 pm
I have heard so many stories about people with CIDP who were mis-diagnosed with spinal problems and ended up having back and neck surgeries. I can see how that could happen because of nerve pain in legs and arms from CIDP. I sometimes am concerned because I suffer with arm and buttock/leg pain, and I’m not sure if it’s from the CIDP or my spine. I also suffer with neck and back pain which can be severe at times. Did you have back pain from your CIDP?
April 22, 2012 at 11:26 pm
In my case, the neurologist ordered a complete spinal MRI to rule out other causes. Would spinal surgery ever be done without this?
AnonymousApril 24, 2012 at 10:22 pm
I had the full MRI Series with Contrast done and it showed some spinal stenosis. I was in excruciating pain and using 2 forearm crutches for balance. I asked him why my hands/arms problems (grasping issues/etc) and he said he didn’t know. Later I wondered why he didn’t put 2 and 2 together and think it’s her total spine affected….hmm…maybe this is something else?? Well, he’s a trained neurologist but a surgeon foremost. Surgeons usually will want to operate.
We need to stay vigilant about our medical treatment for these reasons. We can have spinal deterioration and still have CIDP. I have back pain and been told it’s part of CIDP. Maybe it’s the mystery to what degree is what? I went thru the gamete trying to find why I was so ill and by accident with a chance consult with the neurologist did. Have read many recent books on how physicians think diagnostically and their treatment options was an eye opening.
AnonymousApril 25, 2012 at 2:49 am
The thing is, if you take an MRI of pretty much anyone over the age of 30 — and certainly anyone over the age of 40 — you will find bulging, degenerative disks, bone spurs, and spinal stenosis (narrowing of the spinal canal). When physicians see these MRI findings, and have that patient complaining of pain and numbness, tingling, etc., the doctor attributes the symptoms to the structural changes shown on the MRI. A surgeon will want to fix the problem by operating.
However, studies have shown that many people with significant findings on MRI have no symptoms, while many people with rather insignificant findings on MRI have significant complaints.
If the neurological complaints are from CIDP as opposed to any structural changes shown on MRI, surgery will be absolutely useless. Back pain is a common complaint of those with CIDP.
AnonymousApril 27, 2012 at 3:12 am
My pain management doc said if at all possible avoid back surgery. He was treating too many failed back surgeries (how scarey does that sound). It’s prudent to make triple sure any surgery is needed. CIDP is quite a surprise bag of morphing symptoms.
I am glad you are able to work, stay motivated, have mobility and certainly have a positive tie attitude on life with CIDP.
AnonymousApril 27, 2012 at 11:39 am
You are absolutely right. I have battled back pain off and on for most of my life, and over the past few years have developed neck pain as well — coincidentally right around the time my CIDP developed. For the last week I have been battling some pretty heavy duty sciatica. It’s no fun, but I agree with one of my law partners, who didn’t have back surgery until he had to be carried to the hospital. CIDP can cause a lot of weird symptoms.
April 27, 2012 at 5:59 pm
I had periodic episodes of lower back pain long before developing CIDP, and the frequency is no different now. I don’t believe there is any relationship in my case, and I doubt there is a connection in most cases of back pain. Back pain is pretty common.
April 27, 2012 at 9:18 pm
If you think about it – it makes perfect sense that there would be back pain involved. Emily had it too, in the beginning, when her spinal MRI’s showed inflammation from the lower lumbar down. She no longer has spinal inflammation & she no longer has lower back pain.
Our neuro said the back pain was from the inflammation &, at the time, he was willing to give her neurontin for the pain. I declined & luckily Motrin was enough for her.
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