Recently diagnosed with CIDP
January 15, 2017 at 8:59 pm
Hi everyone. I’ve been reading this GBS-CIDP site for about a month since I was diagnosed.
A little background round first. Mid July, I just felt bad, run down. I have a bad lower back and just attributed to that. But As August rolled around, I’d get pain a big toe. Then it would jump to the other foot and then it would go away! Then my I’d get a horrible pain in a finger and so on.
Around mid September, my hands felt slightly numb and then by October my feet went just slightly numb as well. Went to my GP, and my B-12 levels had crashed and sure enough, low B-12 levels can cause such symptoms. Went back a month later, B-12 levels back to normal, but symptoms were getting worse.
He sent me to a neurologist who looked at me and said, let’s get a spinal tap, “how about tomorrow?!”
I had the protein marker for CIDP which he diagnosed. I was getting worse all along.
He started me on 80mg of steroids and said let it run its course for 2-3 weeks. If no improvement, we will escalate the treatment.
By the second week, I had to pull out my dad’s own cane to steady myself, my feet felt like they were going paralyzed, plus of course the numbness and burning in my hands.
At the end of the second week, I was so bad, I called him and said you have to see me. I made it into his office and my feet and ankles just gave out as I walked in the door. Talk about a grand entrance!
Luckily the hospital is across the street. I was in for 5 days and just got out last week. I received 5 days of IVIG treatment.
By the second day, I could walk again with a cane and my strength seems to have returned, as if a layer of “crude” was removed from my insides.
So a week later, I’m still on steroids for the long term. While I can walk, my muscle motor control in my ankles in feet are way off and I have to be careful as it affects my balance to extent. My hand burn/hurt a bit, but I can deal with. I do start physical therapy tomorrow, so I’m looking forward to that!
So there it is of right now. I just have so many questions!
-can I expect to see some improvement?
-do you think I caught it early enough for some nerve healing to occur?
-are there any drugs to suppress the immune system I can talk to my neurologist to add to the steroids.
-finally, they gave me gabepentin and xanax for pain management. I feel as if the gabepentin makes things worse! My feet feel less under control and more stiff and it makes me feel drugged up.
The xanax on the other had seems to relax things and when I walk I feel like I’m walking more heel-to-toe rather than having drop foot. Plus it helps my hands bit as well. And I don’t get that drugged up feeling like I do with gabepentin..
Thanks for reading,
January 16, 2017 at 1:07 pm
I’ll respond to your questions in order.
It seems you have already seen some improvement. That’s a good sign. It is not possible to predict how complete recovery will be, so you should just think about getting a little stronger each day when you are in rehab.
Your question about nerves should be rephrased: did you get treatment early enough to avoid axonal damage? Demyelination generally heals quickly and well, but recovery from axonal nerve damage is slow and may never be complete.
There are immune suppressants (I took one for a couple of years). Your neurologist knows about all the standard treatments. You should discuss the entire treatment plan and options, but leave it to the neurolgist to decide whether you need any particular medication.
Pain management can be difficult. I anted to get off pain meds as soon as possible and found I did not need them after I started recovery. Others here have more experience with this.
Xanax is a sedative used to treat anxiety. It does not have any direct effect on nerve healing.
January 18, 2017 at 7:25 pm
I did what GH said and that was to get off, and stay off of pain meds, particularly the narcotics based and all the mood altering psychotropics, specifically gababentin, effexor, elavil, neurontin, paxil, wellbutrin and others of that ilk. Over the years the doctors offered me all of those.
No doubt others could share their positive experiences with these for nerve pain management. It’s personal with me. I don’t like the side effects.
I also took an immune suppressant. I stopped taking it almost 6 years ago. Here again, it’s only my opinion, that the immune suppressant has so far permanently suppressed my immune system.
January 18, 2017 at 9:41 pm
I quit the gabepetin. It made me miserable. Made my hands and feet hurt worse. Also affected my mood and me have hot flashes!
With the steroids, the xanax does calm me down and I still swear it decreases my hand/feet pain.
This week I’ve seen great progress! And my physical therapy people are awesome.
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