undiagnosed chronic muscle pain, seizure/tremors

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New Member

Date Joined Aug 2007
Total Posts : 4
   Posted 8/14/2007 1:16 PM (GMT -6)   
My 12-yr-old son has has chronic muscle pain, cramping, stiffness for 5 months now (mostly in the neck back and shoulders, but does travel everywhere.)  Other symptoms are headaches, cold sensations, tingling and prickling in limbs, dizzyness when standing from a sitting or lying position. More recently, he has what appears to be tremors or partial seizures as he remains aware of his surroundings. First he feels cold then his whole body spasms for anywhere from a few minutes to an hour, followed by extreme headache, and extreme body pain, and sleepiness.
He has seen a Rhuematologist, Chiropractor, and Neurologist, had bone scan, MRI, EEG, and been tested for drugs as well as everything my doctor could think of.. No one has a clue.  His pain never stops.  Can anyone relate?  Any ideas?

Regular Member

Date Joined Jul 2006
Total Posts : 495
   Posted 8/14/2007 9:54 PM (GMT -6)   
The only thing I can think of is 1) have they done blood work to test and make sure he's getting all the nutrients he needs?
2) Have they checked his heart? My niece had a problem where she would pass out and have small seizures (it only happened a few times) and it turned out to be something easily fixable with her heart. It gave her headeaches and made her tired, and also caused her to get dizzy. She was 13 when she started having problems. She had to wear a heart monitor for a day and had some other tests done. An EKG showed nothing, but this was the only thing they could think of.
3) Push and push and push for an answer. If this doctor can't figure it out, get a new one. It could also be more than one thing adding up, and not all the same problem.
4) Have they checked for nerve related issues or for anything in his brain?

Has the doctor or a nurse ever seen one of his seizures? I know this is going to sound crass, but if you can catch it on video that might help. Also, try getting him to keep a record of what he eats, what he does, where he goes, his pain levels, spasms etc, it wil lbe ALOT for a 12 year old but it can't be worse than what he's handling now.

This is the best I could come up with, but I wanted to reply. And *hugs to you* and him, take care, and please please, if nothing else, check back in with us so we can help you through it, even if we can't make him better.
"When we come to the edge of the light we know, and are about to step off into the darkness of the unknown, of one thing we can be sure; either God will provide something solid to stand on... or we will be taught to fly.'"

"Cause when push comes to shove You taste what you're made of, You might bend, till you break Cause its all you can take; On your knees you look up Decide you've had enough, You get mad you get strong Wipe your hands shake it off, Then you Stand" From "Stand" by Rascal Flatts
Dx.: Polycystic Ovarian Syndrome, Ulcerlative Colitis, Chronic Inflammation of the Colon, Ruptured & Fused L4-L5-S1 w/pinched nerves, Degenerative Disc Disease, Chronic Costochondritis, Back Muscle Spasms, Asthma, Benign Tremmors (hands)

living large
New Member

Date Joined Apr 2005
Total Posts : 10
   Posted 8/15/2007 12:37 AM (GMT -6)   
I would contact a Children’s hospital, they specialize in kids and do the proper test for a 12 year old, my niece was sick with JRA and we took here to Children’s memorial in Chicago and they saved her life. We learned a lot from the doctors at children’s which also contacted the mayo clinic and northwestern hospital in Chicago, When they do blood, urine and any other test it is done for children and their bodies or metabolism it really makes a big difference. We were told the first night she has something that is not in any text book and they really did not know until further testing was done Well she became very sick an her kidneys were shutting down they were only working at 15%, they were to help her and she is doing good today she has been good for about 3 to 4 months she has to be tested every month they think it may be a virus or another autoimmune disease. My point is we took here to a dozen doctors while she was sick, she even had a small surgery and these other Doctors who did test, blood work, urine had no clue they kept sending us from Dr to dr. Like I said before take your son to a children’s hospital it is worth the time, money, traveling it saved my nieces life Good Luck Living large.

Regular Member

Date Joined Jun 2007
Total Posts : 143
   Posted 8/19/2007 10:47 PM (GMT -6)   
has he ever been bitten by a tick? could be lyme disease. even if the tests come back negative, it still could be lyme, the tests are way unreliable.

New Member

Date Joined Aug 2007
Total Posts : 4
   Posted 8/20/2007 1:15 PM (GMT -6)   
Thank you for everyone's advice, it is so appreciated. I conviced my doctor to treat him for Lyme Disease, even though his two tests came back negative. He has started Amoxil 500mg 3xdaily for 2 weeks. And also, he is scheduled to see another neurologist at the U of M Pediactric Hospital in Minneapolis in September. He usually has seizures every night, but the last two days, no seizures. I am afraid to hope that we have found an answer. Time will tell, and I will search to the ends of the earth to find an answer for him.. Please continue to let me know what you think and share your experiences, it is a great comfort to me. I wish you all good health.

Regular Member

Date Joined May 2006
Total Posts : 236
   Posted 8/20/2007 1:41 PM (GMT -6)   
I pray for you and your child. I am crying at the thought of what you both must be going through. I have lupus of the central nervous system and have had those strange muscle and seizure like symptoms. It is so sad to hear a child with such complications. The spasms before they hardened and left me hemipeligic were very painful and then sore for days when they finally loosened up. He must be petrified of the seizures, as I am sure you are too. I kind of thought the sensory damage was cool back then. The tingling was creepy but it was nice not to feel pain and hot/cold sensations.

It is important to look at all angles. I definitely would find a great neurologist who has experience with a lot of different diseases. They had no idea what I had for 8 years as my problems were neurological in the beginning and I did not yet meet the criteria for lupus. Three main systems are nervous (central, peripheral and autonomic), blood and cardiovascular that need to be groomed over for possible causes of neurological problems. My girlfriend had MS with similar symptoms. Again, I have heard of lymes with similar symtoms. Mathis gravis, vasospasms, cardiac disease, etc. can all have similar symptoms. Vitamins have a large play also on the nervous system. Keep in mind it is a lot for a doctor to go through and you need a very knowledgeable doctor who understands these types of symptoms.

Also, keep a journal. Bring it to the neurologist appointments. It will help the doctor see the bigger picture. The PCP told me I was crazy when I explained my/these symptoms. It took years and three neurologists before I found a neurologist who knew it was a problem with the central and peripheral nervous systems. Finally, someone said it was normal for what I was experiencing. Doctors have different views and experiences. I pray you find one that meets your son's needs. My heart is with you both - Kristin
  Dx:  Lupus CNS 11/2005; Current - kidney disease, enlarged heart, MVP/regurg, dementia; GERD; vision loss, narcolepsy, rheumatic arthritis, IBS, ovarian cysts, raynauds, EBV/CFS, inflam. liver/spleen. Rx:  Atenolol, Aricept, Flexeril, Motrin  Previous-rashes, hemi-pelagic migraine, sensory loss, amnesia, PTSD/Dep., host of neuro problems, pregnancy compl., False pos. syphilis, fine speck & homogen ANA; IgM; staph/strept infections, colonitis, pancreaitis, gastritis, costochondritis, pericarditis, Hashimoto's, dyspnea, hyper/hypotension, lipedemia, ulcers, pneumonia, anemia, Scleroderma symptoms, vein swelling, etc.  

New Member

Date Joined Aug 2007
Total Posts : 1
   Posted 8/21/2007 9:13 PM (GMT -6)   
I am very sorry to hear what is happening to your son and to your entire family. I am 28 years old and have been suffering from similar symptoms, though no seizures, for 3 years now (chronic muscle spasms in neck, shoulders, back and pain in arms, hands, lower back, tingling and strange feeling in left hand fingers and left leg). My symptoms were caused by a neck trauma due to a whiplash injury I sustained 3 years ago. I went today to the Chiary Institute in Long Island as I had a small cavity in my spinal cord and was wondering whether this could be the cause of my symptoms. I happend to talk to a girl there who has very similar symptoms to those of your son. She has a Chiary malformation, which is not always diagnosed easily by non-trained neurologists. She also has a few other problems at the base of her skull which cause both muscle spasms in neck and shoulders and seizures up to fainting. The doctors there are able to help her though she will need surgery. I have seen MANY doctors in Europe and in the US throughout the last 3 years on my condition and would highly recommend that you take your son to this institute. They know their job EXTREMELY well, they know all related illnesses and they are committed to help. You will also find useful information on their website though most of it concentrates on Chiari and Syringomyelia, whilst they do treat many other related conditions. http://www.northshorelij.com/body.cfm?id=6407. Don't give up hope and believe in yourself and your son! There's a solution out there for his condition! God Bless!

Regular Member

Date Joined Jan 2011
Total Posts : 373
   Posted 10/15/2011 5:04 AM (GMT -6)   
My 11 year old had exact symptoms ..we just fpund she has scoliosis, I know you went to chiropractor but did he do x-rays?
Crohns dx,Pelvic Floor Tension,Pelvic Adhesive dx,Interstitial Cystitis,Ileostomy,Severe Scoliosis,Chronic Pain,Arthritis,BP1,Anxiety/Panic attacks,Several reconstructive surgeries,dx,fibromyalgia.42 degree scoliosis,pelvic tilt and neurological impingement, complete loss of neck curve and degenerative disc dx

Screaming Eagle
Forum Moderator

Date Joined Sep 2009
Total Posts : 5005
   Posted 10/15/2011 7:52 AM (GMT -6)   
      Good morning Lasardo!
            This happens to be a thread was written way back in 2007. It is very doubtful that the members will reply to you at this point. So for that reason I have locked it.
    If you wish, you may start a new thread and start the topic up again there.
        We all have done this at one time or another...it happens. wink
      Have a graeat day!
    SE wink
Moderator Chronic Pain Forum

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