I recently was given a full range reflex test simply due to someone hitting my car. My reflexes on left side leg were "o.trace" It used to be much higher. The m.d. (not neuro) said I strongly suggest you get an electro studies done again, and looked alarmed.. Well, I hadn't had one since I was diagnosed many years ago with CIDP. My legs feel basically like someone elses, if you know what I mean. Like stumps, so I just figured that was the progressive nature of the disorder, but I admit I never dreamed it was that bad. No reflexes at all. And only slightly better on right side. Any reason to do another study? I don't have insurnace and what good would it really do? Do other people's legs drag or ever get this score? Thanks.
Same but different. Does that help? I have zero reflex in my legs and you could say they feel like stumps and they certainly get sore/painful. Perhaps not that bad though because I am on regular 4 weekly IVIg and so far I am reasonably happy that has prevented the problem from progressing. I am now just over 12 months out from the minor operation that triggered my CIDP. I would not accept that the disorder is progressive when properly treated (though it is true that for some small number of people the treatments available are not effective).
Go for any option you can get to halt the problem.
First of all, one of the hallmarks of CIDP is that it is SYMMETRICAL (effecting both sides equally). If findings are not symmetrical, other disorders must be considered. For instance MS, a similar attack on the myelin sheath surrounding the nerves may be asymmetrical (unequal).
Second, reflex testing can be very subjective. What one person calls a "0" may be a "1" to another examiner. It also depends upon technique (what reflex hammer used, where the tendon is struck, how quickly the tendon is struck, and the force used to test the reflex). If you tense up or guard during the exam, it can also effect the findings on one side or both.
I always think that it is good practice to get follow-up nerve conduction studies, and would not hesitate to have them repeated if your neurologist suggests. However, if you are not feeling any worse, this is not urgent. As for the recent evaluation you had as described above, don't have too much anxiety over what you were told.
Thanks, to all of you! No anxiety, really, just a little puzzling. They did rule out MS long ago. I agree the assymmetrical thing is generally true, but seems lately that more people say one side can be a little more affected. Both sides are totally involved, but because I have had extra injuries to one side, the CIDP can often "appear" more prevalent in one. Yes, I will have another study when I can. The different treatments were ruled out for me long ago. I still do not feel lead to have them. I am still walking and most days able to function, and I was diagnosed in the late 90's, with the hardest form of disorder. I am grateful for so many mercies and keep on keepin on. The car that hit me did so by traveling across 6 lanes of highway directly t-boning me. The er crew were quite surprised I made it and not worse off, but I do think some things were really spurred on with the accident. My speech is very affected, and I've had many tests since then. Today, I get a cat scan and had 3 MRI'S. Trouble is, the doctors who will accept accident claims are pretty ignorant about CIDP. They want to put you right into PT without taking into account the nature of the disorder. I've been re-injured by well meaning therapists who didn't know much about the disorder. So, prayer is a weapon and a course that has been working the best b efore going through any thing I must face:) Thanks again!
My symptoms are much worse on my left side not to say the right isn't affected. I feel it is your right to ask your doctor the reason for a test and if the results will give you a plan of treatment. I'm not about having tests if they don't plan on doing anything different with your treatment plan. There are so many things that can play a part in CIDP, I get increased pain if I get too stressed I can't imagine what an auto accident would do. Wow 3 MRI's sounds like a lot. PT helped alot in the beginning, but I agree sometimes they can push it too hard causing increased pain. It is a balance, you need to exercise the muscles to prevent atrophy, but if you push it too far it can cause a small setback. peace nancy
My right side (leg only) suffers worse symptoms than the left but it may be due to a Arterial blood clot I suffered in 2003. I did not start suffering symptoms from CIDP until early 2010 and was officially diagnosed in Dec 2010. My reflexes seem to vary between IVIG infusions, sometimes they can find a slight reflex and sometimes they find none. Same doctor each time and he explained it as my myelin sheath healing and being re-attacked thus requiring more frequent IVIG treatments which I now receive 1x per week. My insurance company must hate me. Hopefully the more frequent treatments will allow the healing process to progress to a point where I can walk without a cane or climb stairs again.
Swimming is the best excercise that I have found, the local YMCA has a walking lane in the lap pool that is perfect.
EMG/NCV tests always seem to last so long for those of us that have abnormal results. They are uncomfortable at best and painful most of the time. I would only get one if the neurologist really, really thinks it necessary in changing treatment options but if it is just for information sake than I would factor that into my decision.
Good Luck...
Yes, 3 MRI's are a lot, but the different parts were individual studies and because of the extreme pain I was going through, they had to be done that way. I think it all stinks. I had tests because I knew something had been seriously injured, but didn't show. Turns out I had tears in shoulders and knee and also inadvertently revealed yet another cyst, this time in kidney. All good to know. I am wondering if anyone knows of any scholarly studies done on the subject of whether an accident can actually, scientifiaccly documented, exascerbate the CIDP? Of course most of us, KNOW it must, Just wondered.
nancy said:
My symptoms are much worse on my left side not to say the right isn't affected. I feel it is your right to ask your doctor the reason for a test and if the results will give you a plan of treatment. I'm not about having tests if they don't plan on doing anything different with your treatment plan. There are so many things that can play a part in CIDP, I get increased pain if I get too stressed I can't imagine what an auto accident would do. Wow 3 MRI's sounds like a lot. PT helped alot in the beginning, but I agree sometimes they can push it too hard causing increased pain. It is a balance, you need to exercise the muscles to prevent atrophy, but if you push it too far it can cause a small setback. peace nancy
My CIDP (due to a minor operation on the left leg) has not been truly symmetrical but has tended towards being symmetrical. Even now 12 months on I am still aware of differences left to right. My physio suspects that I actually get more pain on the least effected leg (right) because the CIDP was caught early enough for the treatment to "save" more nerves in the left than the right - at least that is our theory!
Thanks. I have had so many injuries that I thi k thats the reason one side is affected more. The idea used to be that to be truly CIDP everything had to be "symmetrical", but it seems that many things can cloud that from showing that way.
Michael C Stark said:
My CIDP (due to a minor operation on the left leg) has not been truly symmetrical but has tended towards being symmetrical. Even now 12 months on I am still aware of differences left to right. My physio suspects that I actually get more pain on the least effected leg (right) because the CIDP was caught early enough for the treatment to "save" more nerves in the left than the right - at least that is our theory!