Thanks for writing in.
There is a possibility that your child is suffering from fibromyalgia. Fibromyalgia in children causes muscle twitches, pains, shooting pains in the legs, insomnia, difficulty in controlling bladder, lack of stamina and ADD.
Please discuss this possibility with his treating doctor. Let us know if you need more information. Take care!
Thanks for replying. I checked out the link you included in your post. Although some of these symptoms may fit, it still doesn't address the numbness and tingling, and the 'buzzing' sensations he has in his hands, feet, arms and head. Also, the vision disturbances worry me. I guess one question is do you actually have muscle spasms (knots) that accompany the pain with fibromyalgia, or is just muscle tenderness?
have u had his labs done recently...low minerals can cause spasms....potasium and magnesium.....also has he had any MRI's of his brain, neck or spine?....check out chiari malformation...it is sometimes misdiagnosed as fibro.Also have u tried an elimination diet...remove certain things and the reintroduce it to see if he has a reaction to it...u mentioned u r doing that with his meds....also check his thyroid...the blurred vision, ringing in the ears ect.....could be thyroid related.
I don't understand why doctors love the fibromyalgia diagnosis, my goodness sounds a lot more serious than fibromyalgia. Doctors don't even know what fibromyalgia is or what causes it yet are so quick to spit out this diagnosis. I know from reading and from my personal experience that mri's are not a tool that are always reliable. Some people with m.s have many normal mri's and it takes time for it to show up. The progressive form of ms does not leave the regular spots that ms does. Trust your instinct as a mother and take this fibromyalgia with a grain of salt. I think it's more like we-have-no-idea-what-it-is-algia. If I come off bitter it's because I have also been misdiagnosed with fybromyalgia.
Thanks for your reply. Yep, been there done that on all accounts. We have had labs done - multiple times, and he is not lacking anything. We have had his thyroid checked, again, all fine. MRI was done on his head and spine almost two years ago - no Chari Malformation, all looked good, except for the small syrinx in his spinal cord. And yes, we have even tried the elimination diet. That was the first thing we tried with his tics hoping to keep him off medication. No luck there either.
Thanks again for your input - please don't hesitate to post if you think of anything else.
Trying to stay sane...
I have to admit, I felt a little 'dismissed' when fibro was mentioned, but I really do appreciate EVERYONE's input. Not saying it can't be fibro, but I just feel that before we resign ourselves to that, and yes, I agree it seems like much more that that, we need to check out any other things that may fit that we CAN test for. I am familiar with fibromyalgia - my Mom and a good friend both have this disease. I will keep it in my mind as a possibility, but I think there are other things we need to rule-out first.
In my research, it just seems that a lot of his symptoms fit MS, and I guess that's my real question here - do they??? Or am I off base?? Is that something we need to rule out at this point?
Thanks everyone -
Worried and Concerned Mom (akpack)
Another question I have before we see the neurologist is should the MRI be repeated at this point? Because of his tics he has to be put under general anesthesia every time he has an MRI (he can't keep still). He had an MRI of his brain and spine done almost 2 years ago, and then another of his spine in Aug. of 2007 and then yet another one on his spine in June of 2008. The last two were done because of his worsening symptoms, but they were only done on his spine (they were looking at the syrinx to see if it was enlarging - which it is not), and they did not use contrast on the last two MRI's. I hate to put him under once again, and if we do, I want to make sure they do the MRI in a manner consistent with checking for MS so we don't have to repeat it yet again. Also, if they are going to check for MS, and if they have to do a spinal tap, it would be nice to coordinate that with the MRI and do them both while he is under anesthesia. I have thought about going to one of the Pediatric MS Excellence Centers, but am not sure yet if I'm even heading in the right direction here, and don't want to go through all of that if I am not. Opinions anyone??
...I am concerned about the syrinx...it is a chiari related condition called syringomyleia
there is a group called ASAP American Syringomyleia Alliance Project......they are a Dot org website wiwth plenty of info on syrinx'.......u need a specialist that takes care of these conditions on a regular basis.
Has u son has a CINE MRI?It's a flow study ...to check if the syrinx is blocking spinal fluid....
Keep in touch!
Thanks, I will check out ASAP. I have read a little about Chari Malformation, and my understanding is that the syrinx that is usually related to that is found in the cervical spine, whereas his is in his thoracic spine. Also, they say that since he is having symptoms in his arms and hands, it can't be related to the syrinx because of the location of it. And no, I don't believe he has had a CINE MRI, that has never been mentioned to me anyway, it's the first I've heard that term. Something new to read about... YAY!! LOL.
Thanks again... off to do some more reading :-P
Researching Mom (akpack)
We had appointments with his Psychiatrist and his Occupational Therapist yesterday. We did some brainstorming in both appointments and both of them said that yes, there most likely is something else neurologic going on besides the Tourette Syndrome. I mentioned to both of them a few things I was concerned about - the possibility of Multipule Sclerosis or Arachnoiditis. They both agreed that those should be ruled out, and the OT added Muscular Dystrophy as something to rule out. She said that his muscle tone is somewhat high, but his strength is low. So, I am going to talk to the Neurologist about those three things on Monday. Of course, I am going to see what he offers up first before I mention them. Anything else pop out to anyone that we should be ruling out??
I think if you google for magnesium deficit, tic, you will find information that can help your son.
Many of the symptoms associated with Tourette's and tics are linked to magnesium deficiency.
Wishing you the best,
Yep, it's one of the first things we checked. His magnesium levels are fine - but a good thought!! Keep em coming!!
...a syrinx can be anywhere on the spinal column....it does not need to be in the crevical spine for it to be chiari......also I wanted to mention...chiari can grow.....it can also be missed....especially if the dr...be it the NS or radiologist...if they r not looking for it or if they are not familiar with it. I also saw u were concerned about MS...they would do a MRI of the brain to look for leisons.
When do u go see the dr?..I pray all goes well.
The usual blood test for magnesium measures the magnesium in the blood stream. The level within the cells can still be significantly low.
Since the cells use magnesium for all enzyme processes, a deficit can cause all kinds of problems. Anxiety, depression, irritability, muscle twitches and spasms, tics, parasthesias (odd feelings on the skin, like bugs), constipation, sensitivity to light and noise, vibration sensations.
The Importance of Magnesium to Human Nutrition
by Michael B. Schachter M.D.
Magnesium tablets are large, as the mineral is bulky. You can crush a tablet and mix it with yogurt. Aim to build up to 400 mg per day.
Almonds are high in magnesium. You can buy a one pound bag of whole almonds at the grocery store. He should eat several ounces per day.