Jess has a new, bizarre and scary symptom. The muscles in her scalp are shaking like the muscles in her back. They literally were vibrating. It pulled the back of her head down toward her neck very painfully. Massage did nothing to help, but it didn't hurt her either. The muscles were very very tight and shook like nothing I have ever seen. The neuro didn't call us back, but that is no surprise. He is awful about returning calls.
New, bizarre xymptom
- Thread starter susiestar
- Start date
Susie--
That is scary! Is is scary enough to warrant a visit to the hospital? When my son complained of head and neck pain the ER docs took it VERY seriously....and he didn't have HALF the symptoms that poor Jess is suffering.
Maybe that is a way to get the attention of a specialist even sooner?
That is scary! Is is scary enough to warrant a visit to the hospital? When my son complained of head and neck pain the ER docs took it VERY seriously....and he didn't have HALF the symptoms that poor Jess is suffering.
Maybe that is a way to get the attention of a specialist even sooner?
I called the neuro. I am sure he won't know if it is an identifier for anything. It passed after a couple of hours, thank God. The neuro apparently didn't think it was a big deal because he did not call us back. Next time it happens I may try to get her to the ER or to the pediatrician so it can be documented. I would vastly prefer the pediatrician because she has common sense and a brain, but if she isn't there I will try the ER. At the time it didn't even occur to me.
Thanks for the support.
Thanks for the support.
M
Mamaof5
Guest
Maybe muscle spasms of the suboccipital muscle or occipital neuralgia? Both involve what you described. It's usually caused by tension in the occipital and suboccipital muscles in the back of the head, neck and upper back\shoulder areas. It's a precursor to migraines, pulled muscles or ligaments or neuro issues where the brain is mis-communicating with the nerves in the body. The last one usually involves what's called the autonomic nervous system.
Mama, any of that might be possible. Our current neuro (and the 2 other ones we have tried to work with) are totally unwilling and uninterested in dealing with this. She has what sure looks and sounds like a movement disorder that affects the rest of her body. Sadly the idiot docs keep harping on it all being caused by anxiety. It is why it took a full YEAR to get the neuro to refer us to a movement disorder specialist. THAT appointment won't happen until NOVEMBER because the doctor is so booked up!
M
Mamaof5
Guest
Can I suggest calling THAT doctor then? Perhaps he\she would be more concerned with your description of what your daughter is going through? Is it possible to call the specialist or was it just an appointment given to you by the referring doctor? I'm sorry the other doctors are being well...idiots. *sigh* and they want us to trust them and do things like this?
Lothlorien
Active Member
I know this might be a hardship for you, but honestly, I'd get her out of state to a really good children's hospital as soon as you can. I honestly feel that the docs are way out of line on this and aren't doing any research to help her.
klmno
Active Member
Susie, as I have gone thru my own recent evaluation and researched more, I have learned that my tremors are neurological- even the psychiatric that did this evaluation included that fact in his report. And they are NOT caused by anxiety even though they can get worse with stress. I'm not bringing this up because I think this is J's answer- I don't know what is causing hers. But something does appear to be majorly wrong if she's trembling like this a neurologists are not considering anything other than anxiety. I think maybe there is some anxiety behind it- but there would be no way to determine that without also considering out other things. When this first was noticed as an issue with me in the military, 20+ years ago, I started seeing tdocs for anxiety and relaxation techniques, etc. I saw several and NONE of those methods helped me. Finally, the military put me thru a battery of medication tests to check thyroid, potential for diabetes, heart, etc. All that got ruled out. FINALLY I got the diagnosis of essential tremors. But the point I'm trying to make here is not so much that this is what J has- just that the doctors should be doing all these tests and ruling out these various things.
Iinterestly, they also gave the same battery of tests to a few other people there who had tremors and they did find that one person's was caused by a tumor in his thyroid. Not to scare you- that is very rare. But by doing these tests and removing his cancerous tumour, they saved his life. Anyone who has tremors should have a lot of various type testing and all things taken serious until everything is ruled out except essential/familial tremors. Especially when the person has them as serious as J does.
Iinterestly, they also gave the same battery of tests to a few other people there who had tremors and they did find that one person's was caused by a tumor in his thyroid. Not to scare you- that is very rare. But by doing these tests and removing his cancerous tumour, they saved his life. Anyone who has tremors should have a lot of various type testing and all things taken serious until everything is ruled out except essential/familial tremors. Especially when the person has them as serious as J does.
They have done a few tests many months ago. We did consult an endocrinologist because the doctor who read the MRI thought he saw something on her pituitary. It was something that is there in kids and not in adults so there are no problems. Her thyroid is fine, or was previously. I totally agree that something is going on. I have felt from the beginning that anxiety was an easy answer from docs who just didn't want to bother with her. They went to anxiety when I would not let them chalk it up to PMS (the stupidest thing I had heard in a long time). The pediatrician we used to see has insisted that everything that has EVER made Jess sick is due to anxiety. Even before the abuse from Wiz was known she wanted to do this. We changed peds because she had the cajones to tell me that Jess's sore throat that was bright red with little white bumps was NOT an infection but was actually deep seated anxiety coming to the surface. She had already told two neuros that Jess only had tremors because she had anxiety. It was the final straw. Our new doctor laughed when I mentioned that the doctor said that strep throat was caused by anxiety.
I fully believe that anxiety and depression are making things worse for Jess. We are working with some tdocs for this as the neuro has her on a LOT of medicine already. Jess felt she wanted to try using non-medicine approaches to deal with her depression and anxiety before she tried medications again. She remembers how strange she felt on prozac and zoloft when they were tried years ago. So far it seems to be helping her a lot.
Thanks for all your ideas!
I fully believe that anxiety and depression are making things worse for Jess. We are working with some tdocs for this as the neuro has her on a LOT of medicine already. Jess felt she wanted to try using non-medicine approaches to deal with her depression and anxiety before she tried medications again. She remembers how strange she felt on prozac and zoloft when they were tried years ago. So far it seems to be helping her a lot.
Thanks for all your ideas!
klmno
Active Member
Exactly- that is what the military knows about me that no one else has figured out yet. The reaction of others to my tremors and some other things caused me to absolutley fear certain situations because I would get judged, laughed at, etc. But because my mother has anxiety to the point of panic, and I personally think dellusions, then they think this is the CAUSE of every problem difficult child and I have. It isn't and I know it.
That's what I meant about J maybe having some anxiety in there- and it can make certain tremors worse but it doesn't mean it caused them- it means that it is contributing to her vicous cycle. I am horribly shocked if no one has ever mentioned essential tremors as a possibility. Not that this is it- her tremors do sound way too severe for that but it still surprises me that no one has even brought that up.
Maybe you have gotten a label that is preceeding you just like I have- you know when that happens, no matter how much something else might be blatantly obvious, only the facts that support the preconceived beliefs are taken into consideration adn written down.
That's what I meant about J maybe having some anxiety in there- and it can make certain tremors worse but it doesn't mean it caused them- it means that it is contributing to her vicous cycle. I am horribly shocked if no one has ever mentioned essential tremors as a possibility. Not that this is it- her tremors do sound way too severe for that but it still surprises me that no one has even brought that up.
Maybe you have gotten a label that is preceeding you just like I have- you know when that happens, no matter how much something else might be blatantly obvious, only the facts that support the preconceived beliefs are taken into consideration adn written down.
It isn't just us. I am friends with one of the nurses at the old pediatrician's practice. The old pediatrician has lost an astonishing number of female patients in the last couple of years because she is doing this to a LOT of young women. Apparently once you have your period all of your problems are either caused by your hormones or anxiety. Regardless of your history, family history, and life experiences. I was shocked because this woman pediatrician used to be completely different. When we first started seeing her she had a HUGE amount of common sense and used it.
The same pediatrician treats young men very differently. I don't know why she changed, but I know at the first visit with each neuro they were very interested and then they spoke to that pediatrician and everything changed. EVERYTHING in the way they treat us changed dramatically. From "I don't know what it is, but you clearly have a problem. We WILL get to the bottom of it!" to "This is anxiety. There is nothing I can do to treat it. You must see a therapist and work with them if you hope to recover. Focus on being completely well and it will happen, you just have to be positive about it and be open to therapy." She even talked one of the docs into believing that Jess does not have the Absence Epilepsy because a 20 minute EEG given after she was on lamictal for 2 months did not show any seizures.
This all sounds like a bad novel or one of those movies about the poor woman that no one believed but she kept trying and she found a cure. But you couldn't make up something this ridiculous if you tried. At least not before it happened!
The same pediatrician treats young men very differently. I don't know why she changed, but I know at the first visit with each neuro they were very interested and then they spoke to that pediatrician and everything changed. EVERYTHING in the way they treat us changed dramatically. From "I don't know what it is, but you clearly have a problem. We WILL get to the bottom of it!" to "This is anxiety. There is nothing I can do to treat it. You must see a therapist and work with them if you hope to recover. Focus on being completely well and it will happen, you just have to be positive about it and be open to therapy." She even talked one of the docs into believing that Jess does not have the Absence Epilepsy because a 20 minute EEG given after she was on lamictal for 2 months did not show any seizures.
This all sounds like a bad novel or one of those movies about the poor woman that no one believed but she kept trying and she found a cure. But you couldn't make up something this ridiculous if you tried. At least not before it happened!
M
ML
Guest
I agree with Loth. They are not helping her. Our medical system is in the dark ages in many ways. My step sister had to go to the Cleveland clinic to finally find someone who understood her daughter's issues. She has mitochondrial disease. They know very little about how to treat her here in Colorado and she has to constantly have them contact Clevleand for direction. There is so much *they* still don't know. Please hug my Jess for me and tell her how sorry I am that she is suffering. ML
ML, Thanks so much. She really appreciates all the support, as do I. I am now searching for other pediatric movement disorder specialists to see if we can possibly get into one of them sooner than Nov. My parents have offered to pay to send us wherever, which is very generous and very much appreciated. I had forgotten to check out the Cleveland Clinic. One of my best friends in HS went there with her mother. Her mom had a rare spinal tumor that was about the size of a large grapefruit. The doctor in our state had seen 2 of them in his career and the only one he operated on was over a decade ago. Cleveland Clinic had doctors that dealt with quite a few cases each year. They were able to remove it safely and now the mom is in better shape than she ever was.
Thanks for reminding me of them!
Thanks for reminding me of them!
Marguerite
Active Member
This sounds like she had a muscle spasm which had the muscle working to the point of fatigue - a fatigued muscle will tremor like that.
Not that it explains the initial spasm, but anxiety alone could do it, especially if some medications are not helping as they should.
Don't be too panicked by its weirdness, but do keep hounding doctors for help and answers.
Marg
Not that it explains the initial spasm, but anxiety alone could do it, especially if some medications are not helping as they should.
Don't be too panicked by its weirdness, but do keep hounding doctors for help and answers.
Marg
