What could this be???

    • Anonymous
      February 21, 2007 at 5:24 am

      Backround: 15 year old female, healthy other then high cholesterol managed by diet and exersize. Had back spasms about 4 years ago for no apparent reason

      Day 1: at night she started complaining of her legs burning when something touched them from the calfs down
      Day2: Went to the Peds who sent us to a Peds Neurologist. By the time we got to the Neuro her legs were tingiling and burning thighs down mostly back side. The exam went normal from what I gather. We were sent for MRI of lower back. My daughter was in so much discomfort and her legs felt her words like 100 pounds each, we needed a wheel chair to exit the office.
      Day 3: MRI results were normal. Still had the burning sensation, tingeling and heavyness. Can walk short distance like couch to bathroom but slightly difficult
      Day4: Sharp stabbing pain in back legs feeling worse go to ER. Spinal tap and blood work to my knowledge fine. Her feet are ICE cold. Can support her weight for only a few moments. MRI done of upper back now. 1 doc said buldging disc 2nd doc and nero said normal for a girl of her age. ER doc said GBS although no elevated levels of protine in spinal fluid. Sent home to wait to see second opinion nerologist.
      Day5: Same as before, no more burining sensation but heavy, muscle cramping. Her words are squeezinng muscle pain. Can walk short distance to bathroom. By evening, in so much squeezing pain cant even stand with help.
      Day 6: Neurologist, same we saw day 2, said not GBS, has no clue what it could be, if not better see hom Wed (day 8). Her feet are still getting Ice cold on and off like before and starting to get puffy from the ankles down to her toes.
      Day 7: No change
      We are now at morning of day 8. She is still sleeping.

      If anyone has any idea what this could be I would be greatfull for information and suggestions as to what to have the Dr look for. My daughter has never had anything like this before. She didnt injure herself. She hs been active and healthy untill all this started happening.

      Thank you so much
      A worried Mom

    • Anonymous
      February 21, 2007 at 9:55 pm

      hi tina & welcome,

      an lp can yield false negatives so gbs is possible. an emg/ncv should have been done days ago. she should be started on neurontin immediately to see if it stems the pain. see my other posts for more info. this girl needs her pain alleviated! and quite possibly needs ivig. take care. be well.

      gene gbs 8-99
      in numbers there is strength

    • Anonymous
      February 22, 2007 at 5:00 am

      Thank you. We go to the Peds Neurologist today. I will be stuborn and demand that those test be done to figure out what is going on. I will post back an update.
      The information I have gotten from here by reading other post have been a blessing.

    • Anonymous
      February 24, 2007 at 1:15 pm

      Hi Tina,

      Here is a description of symptoms that sound similar to what you are describing in your daughter. Perhaps it can be of use. Your doctor may not have thought to look for atherosclerosis because of her young age, but at least it can be helpful to rule in/rule out this option.

      Hope you get a diagnosis and treatment for your daughter soon.

      All the best

      Peripheral arterial disease (PAD) is an ongoing condition that results from narrowing of the arteries that supply oxygen-rich blood to the legs, abdomen, pelvis, arms, or neck. The most common cause of this disease is the buildup of excess cholesterol, calcium, and other substances (plaque) on the inside of arteries, particularly those that feed the legs.
      In peripheral arterial disease, the arteries harden and narrow (atherosclerosis), reducing blood flow to other parts of the body. As a leg artery narrows, the leg muscles do not get enough blood, especially during increased activity. When the muscle is in a resting state, the blood supply may be adequate.
      The main symptom of peripheral arterial disease in the leg is a tight or squeezing pain in the calf, foot, thigh, or buttock that occurs during exercise (such as walking up a hill or a flight of stairs, running, or simply walking a few steps). This pain is called intermittent claudication. It usually happens after a certain amount of exercise and is relieved by rest. As the condition gets worse, leg pain may occur after only minimal activity or even when at rest.
      Other signs of peripheral arterial disease in the legs include:

      • Decreased leg strength and function and poor balance when standing.
      • Cold and numb feet or toes.
      • Sores that are slow to heal.

    • Anonymous
      March 11, 2007 at 6:47 pm

      Your daughter’s symptoms sound very similiar to those of an 11 year niece of one of my daughter’s teachers (how’s that for six degrees of separation?) She was finally diagnosed after about 18 months with something called Reflex Sympathetic Dystrophy.

      I hope you can get the answers you need soon,