My CIDP Diagnosis Story
AnonymousApril 8, 2008 at 1:29 am
I have always been a very active person. I rock climb at a nearby gym 3x a week and my passion was to go out hiking and Geocaching/Terracaching with my two daughters.
In January my left knee started to feel weak when I was rock climbing at the gym. I also noticed that my left arm was feeling a little weak when working on a new climb that was testing my limits. My knee finally started giving out on me enough to go to the doctors. They took an x-ray and found nothing wrong with it.
The next Sunday after I had my x-ray done I woke up and the whole left side of my face was numb. I was a little concerned and called my doc to get an appt. They thought I was having or had a stroke and sent me immediately to the ER to get a CT scan. The CT came back normal and I was sent home.
Over the course of the next few weeks my left pinky and ring finger started to feel numb and tingling. I ended up going to the ER again only to sit on a bed in the hall for 6 hours while they called the neuro on call to give me an examination. They only found a little weakness in my left hand/arm and sent me home.
The next week I started to feel the tingling in my left leg an foot. At first it felt like a cool sensation that slowly started to burn. So back to the ER again only to have them do another neuro exam and then give me some gabapentin to ease the nerve pain. I was also finally given a referral to a neuro but I had to wait about a month to get in to see him. I pretty much made up my mind that I would not go back to the ER even if my symptoms got worse.
When I finally got in to see my neuro he upped my dose of gabapentin to 2300mgs a day which really helped with some of the pain and strange sensations. I experimented with trying to stop taking it but I usually only lasted a day without it. I was tested for every type of disease possible on my first visit and given a referral to get an EMG. The EMG showed a slowing of my ulnar nerve but more interestingly it showed chronic neurogenic changes in most of the nerves in my leg. This got me thinking about a past episode of left sided weakness I had about 10 years ago that “went away” by itself after about 6 months. So most of my family and neuro thought I had MS. A few rounds of MRIs later and there were no visible lesions on my spine or brain.
The next appt I had my neuro said he did not know what I had and he was going to take the “shotgun approach” towards diagnosis. He sent me for another round of MRIs and had more blood work done. All of which came back normal. I sure didn’t feel normal and the weird sensations and pain was climbing up my left leg and going past my knee. I was also given a QST test which showed I had something really wrong with my sensory nerves. I also started to get frequent small muscle twitches.
I started to lose my calf muscle on my left leg and began to limp/hobble around every where and started having real trouble walking up stairs. All of this happening to a person who usually thought nothing of a 15 mile day hike. The weird sensations, pain, stiffness and fatigue was really starting to get to me and I wanted to get some answers fast. After my last neuro visit I lost some confidence in him and started to make some waves at the hospital by getting my PCP to refer me to the top nueros at the hospital. I got shut down by all of the neuros but I was able to get them to look at my records and that must prompted some discussion about what I had. My symptoms were not textbook CIDP since they were primarily in my left peripheral nerves. My NCS also only showed slowing and not a conduction block. Soon the tingling started in my right leg and started spreading from my toes to my calf.
Finally last Friday my neuro diagnosed me with CIDP/MADSAM. I will start IVIG treatment on the 21st of this month. After reading many stories on this message board I feel fortunate to only have had the symptoms since January. However, I do feel all of your pain and wish you all the best on your paths towards recovery.
AnonymousApril 8, 2008 at 9:20 am
It is so frustrating to have to beg for medical help. This is such a rare and strange disease. It just seems all neurologists should have the knowlege to seek out other options when they meet a patient that just doesn’t fit the typical piece of the puzzle.
Iallison, I’m sorry you had to go through so much to finally get a diagnosis. Everytime there is another post or thread started here about someone who can’t get diagnosed it is more frustrating.
Too bad this site couldn’t be required reading for neurologists. Maybe they’d learn something.
Good luck, let us know how you are doing.
AnonymousApril 8, 2008 at 10:26 am
Why are they making you wait 2 more weeks for IVIG?!?!?!
IVIG should be started ASAP to prevent further demyelination! You should call your dr back & ask that they order the IVIG sooner! IVIG is sometimes hard to get but in your case the dr should just need to make a few phone calls. My daughter received her 1st dose of IVIG about 12 hours after her diagnosis for GBS.
How are you getting your IVIG? Will you be going to the hospital, infusion center, or at getting it at home with a home care company? We’ve had it at the hospital & at home and I can tell you being at home is far better.
Also, do you know what brand you are getting? That’s important! If you’ve ever had any problems with your kidneys then you need to make sure that you are getting a product that does NOT contain sucrose.
You should go out & get a big binder to keep all of your test results, rx’s, dr’s notes, infusion info, etc in. It’s a HUGE help in staying organized.
AnonymousApril 8, 2008 at 10:40 am
so sorry that you have this crazy syndrome. i was dx in Nov 2007 and it truly has been a roller coaster of a ride. without this forum, i do not know how i would of handled it.
i, also, was very active and have found the physical limitations and mental strain very difficult to deal with. the people here have given me insight and encouragement and what they deal with has given me hope. I hope you find this to be true for you
I agree, why are they waiting two weeks prior to starting IVIG. the sooner you get treatment the better
we are here for you
AnonymousApril 8, 2008 at 11:52 am
I have the MADSAM variant of CIDP as well. It can also be called Lewis-Sumner Syndrome. The hallmark of this form of CIDP is asymetric weakness. I was an avid runner and expert-level snow skier, but have been unable to do such things for years. You are early in the game and hopefully a treatment protocol will work for you and return you to activity.
Regarding IVIG infusions, I have always received IVIG in a hospital outpatient treatment center. I am able to run the infusion very fast, and the whole process only takes 2 hours. I would not want to do the infusion at home, as I try to really keep the medical stuff out of the house. So, every one has their own viewpoint on this.
Best of luck to you.
April 8, 2008 at 2:05 pm
Welcome, so glad you are diagnosed and on a path to treatment. Since you mentioned you have been reading here, I will not bore you with the flo rates, and where you can be infused after the first time in the hosp. But if you have questions, ask, we will help. Good luck to you on this journey, with some luck, you will be able to climb again. My son is pretty close to normal with the acception of tightness and soreness in the ankles and hands (relieved with aleve) He runs, plays, jumps on the trampoline and plays like an eleven yeasr old boy. Best wishes!
Dawn Kevies mom
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