hello, my daughter is 13 she was admitted in the hospital last Nov because her right leg was jerking non stop every 15 seconds for just a few seconds each time. They did an MRI and and EEG, and lab work. they said that everything was fine other then a tiny lesion that was benign in her L1...she was discharged and placed on clonidine and zanaflex...the meds have not been working and we were then sent to physical therapy and then to st louis to the movement disorder center after seeing a neuro psychologist here that said its not psychological. The neurologist there said he thinks its psychological because her tests have been fine even tho the jerking has not stopped but discovered that she has an IT Band. We are doing therapy twice a week and now the therapist is saying that there is muscle weakening in her lower back and down her leg. We are now going to do an EMG in two weeks. She still has constant jerking when she is awake only. Even when she is standing walking and sitting. She is in pain all the time now and I am very concerned. How can she have this lesion and still be overlooked by saying it could be psychological when we have already been told that its not? what could possibly be going on with my child
Misdirected electrical signals is known as SYNKINESIS.
Your daughter's main problem is not psychological and the lower back weakness is an occasional remark which do not necessitate any physiotherapy.
EMG is not the accurate tool to study nerves [but just muscles].
Prescribed meds COULD NOT work in synkinesis, because they just affect muscles [speaking about cloni and tinaz].
Dear DON'T WORRY SHE WILL BE FINE.
Synkinesis could be the result of an inflammatory process like PID pelvic inflammatory disease,seen like the L1 mentioned lesion or in other form.
The solution is through the following treatment of 3 main meds;
1- a potent antibiotic like Rifampin or other.
2- a potent antiinflammatory like corticosteroid injection for 10 days then titrate slowly, pay attention to the salt and sugar limitation.
3- a potent antineuralgic medication to fight pain AND slow down the misdirected electrical signal like Carbamazepine.
Afterthat the recovery should happen, but you cannot be late in starting the treatment because in a small percentage of cases synkinetic connections are really taugh to treat and may need ''surgery of liberation''.
Moreover, Synkinesis could be selflimiting and your daughter has also the theoretical chance to autorecover [without any medical/paramedical help or intervention].
Follow up her with 2 Coronal views Femoral Plexus MRIs, one very soon and a second one late.
I am ready to assist this treatment. You are welcome.
thank you for your information however I must let you know that my daughter is a virgin, she has already been checked and still has her virginity...so how could it be something like PID when only those who are sexually active can get that...also she has not had a period yet..she has spotted once before and that was about 4 months ago but has not had a reg period or started a reg period at all....Another thing is that I was looking at the synkinesis in the dictionary and that talks about the eye, this is in her lower back, her leg, how it jerks she has been diagnosed with myoclonus and that she is now having muscles that are weakening..Im still unclear as to what you are talking about if you could elaborate more to help me understand. Another thing is they just did more lab work and all her labs are fine
PID is has a very wide group of causes and do not affect just sexually active females.
PID is not related to a regular period.
Popular internet examples for non-neurologists about Synkinesis is really tiny and still limited to facial synknesis.. I and you are now the first to move this subject out of the face. Practically Synkinesis and tranmission of electricity can happen between any two neighboring nerves.
Psoas muscle inflammation is quiet popular in medical literature, post appendicitis, inflammatory bowel disease and many other bacterial transmissions can happen, and I am obliged to inspect over uncommon pathologies because I expect that all common pathologies were well studied insideout.
Finally lumbar synkinesis is not a fatty abused subject, its rarety.
to understand more the pathology you should read and know that, the lumbar plexus is formed from five lumbar nerve roots on each side, and that lumbar plexus is situated within the psoas major muscle, and that psoas muscle inflammation is a part of a PID likewise other frequent problems.. appedicitis... happening after sport activity for example.
I am sorry if my answer was not helpful or/and confusing.
HEY DR IF UR REALY AN EXPERTMAYBE U CAN HELP ME OUT AS SOON AS POSIBLE I HAVE RECENTLY BOUT THIS NEW DEODORANT AN NOW MY ARMPIT IS GROWING THIS PAINFULL LUMP SO CAN U HELP ME ANY MEDICINE I CAN TAK 2 REDUCE THE LUMP IMMIDETELY PLEASE
can you please tell me what I can do to get the drs to test for these things. apparently they all want to think it will just go away and she is the one that is having to deal with this on a daily basis. She is losing sleep because the jerking does not stop the pain doesnt stop and finally she will colapse..she is very cranky as well. I know there is something and I know its not psychological..If for one second I thought it was I would have her seeing as many psychologist as possible.I am a foster parent and I do deal with kids with special needs as far as depression, anxiety,post tramatic stress etc...even sexual abuse...I am just to my wits ends getting someone to listen to me
I am listening to you dear and I am sorry for the 5 days late-answer, but I am really frustrated with the huge number of frustrated parents or/and worldwide difficult cases. Really internet is showing us now how many black swan cases exist in medicine.
Please be convinced like me that the same doctor who called your daughter's psychological WILL NOT helps you in considering MRIs....
1- First of all as I also noticed now they didn’t' made any brain MRI !!!
SOOOO start with a brain MRI to rule out any RIGHT INTERHEMISPHERIC source of motor action....
2- if one is normal go to Lumbar plexus MRI and let me know about the results.
Unfortunately it is out of my rights to ask a colleague for an exam, in particularly if the second doctor is practicing in a different country than I.
they did do a brain and spine mri on her and it turned out normal to be honest. and 18 months ago they did the lower lumbar MRI, it to came out normal, now I dont know what normal is do a Dr. however when they tell me that she has a lesion on her L1 that showed up on the MRI, how is that normal? We are actually heading to st louis mo this morning tomorrow they are doing a Nerve Conduction Test and an EMG so I am hoping to find results out for that right now. Also they just did her lab work again a week ago and stil is saying that it is normal. How can a child have every test turn up normal and yet the jerking doesnt stop, the pelvis keeps rotating and they know she clearly has myoclonus and an IT Band...this isnt making any sense to me and yet they dismiss it.
ok so we went for the EMG and they informed me that they were just looking for a muscular desiese or nerve desiese, said that everything checked out fine however they were having to hold her leg down because the jerking was worse during the emg...so now whats my next step.Its apparent that they are not trying to figure anything out on her being as all her tests are coming up ok and Im afraid that they wont try anything else with my daughter. I just dont know what to do anymore.
Ok, if you remember I previousely mentioned to you that EMG will not bring or add new helpfull information in your daugher case, so don't pannic. I insist on 2 things; a follow up lumbar MRI focusing on the L1 lesion and a lumbar puncture for immuno-biochemistry AND histopathology.
if a suspicion of spinal cord injury by virus; do the following serum level studies; HSV, EBV, CMV, HIV, HBV, HCV [IgG and IgM] and VDRL, I suspect a positive nr 3, be in touch
also if you mean that in her last MRI L1 disappeared please let me know, moreover whenever u can send me a video of her in state of jerking it will be very helpful. You can find me on Google or just facebook
I actually have 6 videos of her on youtube..I will add you to my facebook and send you the links to her videos. The lesion is still there, they are calling it a hemoalengomia or something like that. Also I reqested all her medical files and in her files for some reason it states that the MRI showed decrease in T1 and Increase in T2. I dont know what that means but that is not something that they shared with me. also stated that it showed pelvis rotation and that the MRI had places that did not show up because of movement...lol dont know why they never told me that either. Go figure, she cant lay still if her leg is jerking contstantly while awake. I knew it was inconclusive but who am I..Just the mother of the child...lol. I called for the results from the neurologist as far as her EMG and nerve test and they said that they dont have report wont have it until next week.
ok here are links to my daughter and her videos on youtube..I tried to add you to facebook and was not able to I guess I am doing it wrong so I hope this helps
thank you for your speedy reply, I wached all of them, fine can you send me the MRI slide were the L1 lesioned was mentioned once ?
and one more, can you tell me if the frequency is the same since she started to have them or they are increasing/decreasing, do they change during the day, for example more frequent evening...
ok as far as the frequency, its the same, this happens every 15-30 seconds as long as she is awake, however if you start messing with the leg, foot, or the lower back, the jerking is more severe and comes quicker..at this time its even faster. Now as far as sending you the slide, I have 2 discs that have all her MRI's and EEG's on them, how would I send you the slide because that is new to me.By the way can I get your opinion on the videos that you seen and do you know of any neurologists or dr. in Missouri in the States that would be interested in seeing her? Because this is crazy that the ones that she has seen has not even thought about the things you are looking at.
Madame, I don't know personally US neurologists but I am sure many of those who are practicing in Missouri can interact with your daughter case.
L1 lesion may be seen on 1 or 2 or 3 slides of the study you have on CD. we may need the help of a physician in choosing them for upload.
MRI study of 1 or 1.5 Tesla strength may sometime be not sufficient in visualizing small lesion like that one on L1 [and thus 3 Tesla MRI is needed], but after all I become more beside the suspicion of a peripheral neural problem than a central one, I mean after seeing the videos your daughter is most probably having a lumbar plexus firing than a brain cause, if it is caused by a transient viral infection it MAY be shown on the lumbar puncture- cephalospinal fluid study by high IgG [oligoclonal bands] and proteins, or start with a blood exam of the 7 viruses I already mentioned in a previous letter.
Ok I finally got ahold of the neurologist nurse, she said that they do not have the reports back as of yet even tho the emg and nerve test was done a week ago. She is insisting that the neurologist is saying this is a conversion disorder that my child needs to see another neuropsychologist. EVEN tho there is a lesion, she is saying its nothing. I asked her what if another psychologist says its not psychological and her exact answer is that I will need to see another one because they all have their own opinions... CAN YOU BELIEVE this....Basically I feel as tho they are just putting her to the side. They are not wanting to do anymore tests on my daughter. This is a child who has never been mollested,she is a happy go lucky child, very popular in school, makes great grades, has several friends, doesnt really do anything wrong. I cant believe this is the end. She told me I was entitled to a second opinion but I will have to go on that on my own. this is rediculous
I am sorry I cant do much when things come to the others opinions or even to the health care system. I will be glade whenever you can find somebody who has the will to continue investigations, one is sure [and 99.999 % sure], your daughter has no psychomotor disorder and no need to offer me argues. Please don't give up.
waiting for the good news, please also take care of yourself, dont loose nerves
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