Anyone experience "Freezing Episodes?"
AnonymousSeptember 17, 2012 at 2:30 am
Since the onset of my disease, I’ve experienced “freezing episodes.” It began with my leg muscles freezing–I was in the passenger seat of the car, went to get out, and couldn’t move my legs once I stood. I was just sort of stuck in place and my legs felt like they weighed 1000 pounds–I was telling myself to move, but I couldn’t lift or move my legs in any direction.
These freezing episodes happened a few times before I ever got to a neurologist–once I did, she simply said the freezing was “interesting” and we went through about a year of diagnostic testing and ruling things out before she concluded that CIDP seemed to be the closest she could get to a diagnosis. She started me on IVIG almost 2 years ago, and after a few courses, it seemed to be working. I was getting about 3 good weeks out of each treatment, then I’d fall back into the shaking, cramping, gait abnormalities, weakness, pain, etc. The freezing episodes were relatively infrequent after a few months on IVIG. 4 months ago, my neuro decided to start weaning me off of IVIG, suggesting we try CellCept instead. She moved my treatments from every 4 weeks to every 6 weeks. At that point, I had a significant deterioration. The freezing came back and is worse than ever.
I freeze a lot when I’m stopped or sitting and try to get moving. I can rise from a seated position, but then my feet just won’t go. I’ll fall back into the chair or I’ll stand for a few minutes before calling someone to come give me a hand and a push. It will happen when I’m in a grocery store or mall, and I stop at the counter/cashier to pay–I go to leave, and I’m just stuck there, often having to ask a stranger for a push to get my feet moving again. It has happened when I’m out alone walking the dog, and I’ve had to call my daughter on the phone to come get me.
Two nights before my most recent neurologist appt, I had the worst epidose yet–I was standing at the fridge, and my daughter asked me to grab a pen before I came in to watch TV with her. She looked over a few seconds later and saw me stuck, and asked if I needed help. I couldn’t respond. My jaw was clenched shut and I couldn’t talk. My hands didn’t move–she came over and pried the pen from my fist, then tried to uncurl my fingers–they went right back into a tight fist. I was able to grunt a bit, and she was able to make out my attempt to say “I’m stuck” despite my mouth being closed. She waved a finger from side to side in front of my face, and told me to follow her finger. I could see her and hear her, but she told me the next day (after the panic had subsided) that I didn’t move my eyes and had a blank stare on my face, with my eyes glazed over. After a few minutes, I was able to wiggle my fingers slightly. I was still grunting and incomprehensible, but as we’d been through this before, my daughter knew I wanted her to help me lift my legs. She was able to move them slightly, and then I slowly regained control of my muscles and was able to break out of the freeze. Once “unstuck,” it took probably 5 minutes for me to get from the fridge to a chair 20 feet away. It was another few minutes yet before I could speak–my daughter had to grab my chin and pry my mouth open to “unstick” my jaw. I was then fine the rest of the night, and had only minor freezing episodes (legs only) the next day.
When I described the latest episode to my neurologist, she suggested that the freezing was psychological–happening primarily when my other symptoms are worse and I’m stressed. I’m not convinced. The first episodes happened before I even realized there was anything wrong with me. At that point, I’d been diagnosed with minor diabetic neuropathy a few years earlier… nothing I was significantly worried about. I was in a good relationship, happy with where I was in my life, no financial or medical worries–nothing that, in my opinion, would contribute to a somatic episode. I’m convinced that this is part of my CIDP or whatever it is that’s going on with me neurologically.
I’d really like to hear from anyone else with CIDP who has experienced “freezing” or “blocking” episodes, or any kind of paralysis. What have your doctors said about it? Do you/they believe it is related to your disease? Thanks! 🙂
September 17, 2012 at 4:01 am
I want to start this by saying I’m a very blunt person. What I am about to say is out of concern for you…
You need a new neurologist ASAP! To even suggest that your symptoms are psychological is well…crazy! I hate it when dr’s do that. If they can’t explain it & they can’t see it, then it must be in your head.
I always recommend Dr. Dyck out of Mayo in Minnesota. Are you able to get there? Other people who post on this site have seen him & I think everyone was pleased. Google him.
I have never heard of “freezing” as you are describing it. I would be concerned with the blank look on your face that your daughter witnessed. You need a dr that is going to look into this ASAP.
September 18, 2012 at 7:36 pm
I agree with Emilys_mom. When you are sliding backwards after three weeks why in the world wouldn’t a knowledgeable Neuro have you do IVIG every 3 weeks! Then, when IVIG is working, to want to change to CellCept is sort of “idiotic”. You need a neuro who knows what they are doing or at least is willing to do a modicum of research. You need a change now.
September 19, 2012 at 4:55 pm
There’s nothing wrong with getting a second opinion when things aren’t working out, but it is rash to call a neurologist’s recommendation to try CellCept “idiotic.” I have been on CellCept for almost two years now and my CIDP is under control. Of course patients differ in their response to various treatments for CIDP, but it is not clear to me whether Dotti even tried the CellCept regimen.
CellCept does not have an immediate effect, however. In my case, I took prednisone and CellCept. The prednisone was slowly tapered to zero over the course of a year, after which I have relied solely on CellCept. I am happy not to need IvIg treatments.
My recommendation for anyone with CIDP is to find a neurologist in whom you have confidence, then follow that doctor’s treatment plan. If it doesn’t work out, try something else and, if necessary, try another doctor. But keep in mind that CIDP is a difficult disorder to treat and individual responses to treatment vary.
September 19, 2012 at 9:50 pm
Not to get into an argument, I was not wise to use “idiotic”, but cellcept is a second line if first line IVIG does not work. If I read the question correctly the treatment was 4 week intervals and when that only worked for 3 weeks instead of moving to 3 week intervals it was changed to 6 weeks. Then when that didn’t work the plan was to go to level two CellCept, which reduces the bodies immune system. It seems to me that it may not be “idiotic” (I apologize for using it) but it does seem unreal to not reduce to 3 weeks. I spent 8 years on 3 weeks and got along really fine. (Am now on 4 weeks and doing great). I was put on a immune reducing medication and the result was 4 weeks in the ICU with an infection. The docs all said I would have been ok if not on the immune reducing medication. Also note that if you become pregnant they want you off CellCept as it affects the fetus. From the CellCept site: Using CellCept can make it easier for you to bleed from an injury or get sick from being around others who are ill. You may also have an increased risk of cancer. Your blood will need to be tested on a weekly or monthly basis while using this medication. Do not miss any scheduled appointments.
Why not just simply go from 4 weeks to 3 weeks.
September 20, 2012 at 1:15 am
There are certainly risks associated with CellCept, although I have not had any problems. I agree that if there is a concern that the treatment plan may not be the best, it is appropriate to get a second opinion, preferably from a neurologist experienced with treating CIDP.
Certainly increasing the interval between IvIg treatments without an alternative treatment is not going to work. The reason for not reducing the treatment interval may have to do with the cost. IvIg is a limited and expensive resource.
AnonymousSeptember 23, 2012 at 1:06 am
I’m sorry you’re having such problems. Sometimes I do “freeze” but its due to my nerves not being able to send adequate messages to my muscles to move. This to me is part of CIDP…the demyelinating causes nerve conduction issues. I expect my hand to grab the spoon and it doesn’t move. My foot won’t “pick up” as I enter my house and it slams against the door frame.
It is always good to get a second or third medical opinion as CIDP can be tricky and it possibly could be something else causing your symptoms. I’m going to my neurologist soon with concerns and also to rule out new problems that may not be due to CIDP. I want to make sure I’m getting proper treatment for what I have whether it’s CIDP or not.
AnonymousSeptember 23, 2012 at 11:20 pm
Im sorry you are having these episodes, I too have them. Last month it landed me in the hospital for 3 days with stroke like symptoms also. Ive done the IVig treatments and ended up with a-septic meningitis, tried steroid therapy with the same results, Cellcept did nothing for me. My advice is to find a good neuro that has experience with CIDP. I was dx’d 6 yrs ago and had one of the best neuros in the country as my doctor, she is at the Cleveland Clinic in Cleveland Ohio then we relocated to NC and I was very fortunate to find 2 great neuros here. Please research as much as you can for a good neuro, it is so well worth it. I wish you the very best. EMail me and maybe I can help you in your hunt. Many Blessings, Char
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