normal reflexes, lumbar puncture, emg/ncv
January 4, 2009 at 8:24 pm
Nothing surprises me anymore in the medical world, however, I would at least expect some absent reflexes. I guess things are more complicated in that the symptom onset to recovery were so close. In about a months time total if I recall. There are people on the site who do not have elevated protein or a bad ncv/emg, so it is possible. I would imagine TM or MG Would show up on the ncv/emg. As well your docs do not seem to think it is either of those. Has cidp w/spontaneous relapse and remitt been discussed? Has a test for ms, lupus and all of the other obvious neuro muscular dis. been explored? Maybe it really is just an injury form hockey. Good luck to you.
Dawn Kevies mom
AnonymousJanuary 4, 2009 at 9:12 pm
They feel pretty good about ruling out MS. His spinal fluid was normal as was his brain MRI. It is also very rare in children and especially boys. They feel they have ruled out all rhuematic stuff as well. I was doing exercises with him today and noticed that his right calf is way more atrophied than his left. Do you see such unequal return with GBS? It actually frustrates me because when they did the emg, they did it in his left calf and I told them his right was weaker. They insisted it was his left. Now I look and his right is about half of the size of his left! Who knows. I have just lost confidence in them.
All of the sports oriented doctors we have spoken with feel that this is no way can be do to an injury. Any sports injuries that cause a delayed response have bleeding, broken bones or swelling and he would have had to have a substantial amount to create the level of paralysis he had. Even if it turned around rapidly.
We have many doctor friends and every single one says… “It sounds viral.” I spoke with a friend whose husband is an infectious disease doctor today. She is my closest friend from PT school. She is going to see what he thinks and have him call me on Wednesday. He is working long days until then.
She is also going to call her friend who is a pediatrician at Seattle Childrens. Do you know if that may be a good second opinion place?
I am taking him skating tomorrow morning for the first time since this all occured. His neuro said it was okay. It will be interesting to see how it goes and how he deals with it emotionally…. both since this all came on when he was on the ice (he wasn’t playing, just watching) and since he was an unbelievable skater and will have a long way to go.
Yesterday was 6 weeks. I say he is about 90% but really I suspect he is not quite there given the level of atrophy I saw today.
Take care and thanks again for your expertise!
January 5, 2009 at 10:08 am
Not sure where you live, but if you are going to have to travel to Seattle, just go to Mayo. The skating would in my opinion, be a good reference for you to gauge where he is and where he was. The only bad thing is that he may not be emotionally ready to see where he is now. As a PT it would also be great for you to use as a reference point to measure progress or backwards slides. Your son is lucky to have you in the field, you know what to look for.
I can’t imagine, but anything is possible, that a virus would cause atrophy, especially favoring one side more than the other. I do not know if those on the site with GBS experienced symetrical or asymetrical symptoms specifically. Miller Fisher is a variant that affects one side more than another I think.
Not that I am suggesting CMT, but it was a consideration for Kevin initially, and eventually ruled out. Charcott Marie Tooth affects males more than females and is slow to manifest. It is a hereditary muscular issue but can also occur due to a spontaneous mutation. Typically there will be results on the ncv/emg that help to identify it and pursue it as a dx. You have a good ncv/emg, but did mention that you feel the wrong leg was tested based on your visual of the atrophy on the opposite leg. I am just throwing things out there that we encountered while on our diagnostic journey, I am certainly not suggesting any of the above mentioned as a diagnosis, just considerations, they obviously turned out to be wrong for us as well.
You have never mentioned the hands, are they ok? Arms as well. I liked having the grip test as a unit of measure. It was not speculative and provided actual numbers. I forgot what the unit was called, dymometer or something, the PT gave me a sheet and we recorded three sets of measurements and had norms to compare it to. I was able to see tangible evidence. Our neuro also has the hands fan out and tries to squeeze together the index and pinkies looking for resistance. He also has Kevin curl his fingers into his palm and tries to pull the fist apart with his fingers.
I guess the only options are to just wait and watch for progress with no backslides and shrug it off as either gbs or a virus as suggested by your docs, or search for a definitive answer and seek Mayo as another opinion. I am sorry I cannot offer you any better answers. Good luck, I understand your angst, confusion and desperation.
Dawn Kevies mom
AnonymousJanuary 5, 2009 at 2:17 pm
Hi All, Thanks for your ideas. I am fairly certain he does not have CMT. His strength is returning but at an uneven rate. I measures his calf girth and one is about 3/4 inch wider. I just think that however this thing effected him, it effected the right calf the most of all of his muscles.
I really feel he most closely presents with transverse myelitis but he really doesn’t fit that really well either.
We went skating today and he did GREAT! He was able to skate very well after getting over some initial jitters! He skated circles around me and was able to skate backwards and do cross overs which take a lot of strenth to do. He was the fastest person at the free skate but still not near his full speed. Still, he did about 75% better than I thought he would given that this is his first time out in 6 weeks!
I actually had a patient with CMT. You don’t see a rapid onset of paralysis and then recovery at his level with that disease.
We were thinking of Seattle because we have medical connections there and family to stay with. We are also thinking Johns Hopkins for the same reasons.
Unfortunately, I think his pediatric hospitalist may be correct, he has something we just don’t know about yet and she will think of him in 20 years when it is a known entity and say, ” I remember that kid years ago, this is what he had.” She said that it is usually a good think if they don’t know what it is and it gets better.
The medical person in me just can’t seem to let it go but I need to help him rehab and go on with our life and try to let go of this a bit. At least, that is what my husband thinks. He does want us to get a second opinion but is concerned about all of my worry. He just isn’t a worrier.
AnonymousJanuary 7, 2009 at 12:45 pm
I was originally dx GBS, but later changed to Transverse Myelitis because my reflexes returned within a week, I had bladder dysfunction, a banding around my chest and I wasn’t recovering very well. Also, my white blood cell count was off the charts as a result of a lumbar puncture. If your son doesn’t have these symptoms, it’s probably not TM.
If he has a relapes, I would encourage you to take him to the emergency room of the best hospital in your area.
It is a great sign, I believe, that he is skating after only a few weeks.
AnonymousJanuary 7, 2009 at 7:59 pm
Thanks Rob, I did take him to the best hospital in our area for Children. I feel they did a decent job. I just wished that they didn’t rush to conversion because they didn’t exhaust some possibilities. I wish they would have done some stool samples, etc to look for viral issues. I guess I need to just let that all go. I would take him back there if this happened again so I guess that says something. They did look to rule out TM, GBS, rhuematic and vascular conditions. That is about all of the things they should do.
If you don’t mind me asking, did your MRI show any inflamation in your spinal cord? I know that girdle or banding sensation is very common in TM and he never did have that. His reflexes were normal and he reached his worst point at about 24 hours with bladder problems. That part is similar to TM. His recovery I know is speedy relative to most with GBS or TM.
He really had no pain except for an acid indigestion like feeling that morning in his chest. That went away with pepsid so it probably was a stomach upset.
I think he is going to remain a medical mystery and his mom is going to need to live with the unknown which is particularly difficult for someone who works in healthcare. We are VERY greatful for his speedy recovery and hate to even bother everyone since we know how lucky we are given what most people go through. I have a good friend who had GBS. It really took her 2 years to get to her “new normal” and emotionally it took her a lot longer than that.
January 7, 2009 at 10:36 pm
I pm’d you regarding test results and r/o viral/bacterial infections etc.
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