Please help me to solve this frustrating medical symptom puzzle!

Discussion in 'Chit Chat' started by Haileyhouse, May 5, 2015.

  1. Haileyhouse

    Haileyhouse Member

    Hello, everyone! I just registered here in hopes that someone may be able to give me some insight into my problem. Okay, here goes: I have had fibromyalgia for a long time and have several spine issues. Those lead to two cervical spine fusions that left me with some residual spinal cord damage. My problem that developed just recently, and you are going to think I'm absolutely crazy, is that when I am startled or wake up suddenly, my lower extremities start having very rapid seizure-like movements. This will last for approx 3-4 mins, then they stop and it feels as if scalding water is being poured inside my legs. I would be grateful to anyone who has any ideas or information.
  2. kswebb

    kswebb Member

    Hi Hailey ~ I am sorry to hear that you are having these health issues. Quick background on me - I was diagnosed with Fibro way back in the 1990's but symptoms changed and got more severe. One of them was the feeling of hot water being poured on certain parts of my body. In the beginning my feet/ankles. My chiropractor (who happens to be my niece) told me that was caused by nerve endings. She helped me with adjustments. In 2012 I started to get some other really scary symptoms and ultimately lost my vision (temporarily), which led to MRI's of my brain, eyes and spine. I have lesions on my brain which at first they said I had Lyme Disease and I saw a specialist who did many of the Lyme titer tests on me and finally said I didn't have Lyme but needed to see a Neurologist. The Neuro did more MRI's and a Spinal Tap and I am diagnosed with Multiple Sclerosis. I am managing my symptoms with diet, hormone adjustment medication; supplements, acupuncture and chiropractic care; as well as relieving some stress factors in my life. I am doing better today in some ways than I was in 2012 but some things are progressing.

    Back to your symptom of waking in the middle of the night with the seizure type movements. I would suspect this is probably nerve related as well. Have you had any MRI's done? I would definitely seek more medical care - perhaps see a Chriropractor and perhaps a Neuro as well. Unfortunately these symptoms can be related to many disorders.

    I absolutely do NOT think you are crazy. You sound scared and in need of some answers. I will keep you in my thoughts and hope you find the solution to your issues. This is a wonderful board and I am sure others will offer ideas and support before long.

    Hang in there and take good care,

    UVAMOMB likes this.
  3. Haileyhouse

    Haileyhouse Member

  4. Haileyhouse

    Haileyhouse Member

    Thank you, Kelly. for responding MS has certainly crossed my mind, because I do have some of the other symptoms that goes along with that. But do you think it could be caused by some spinal cord damage that never fully healed? Could that be mimicing MS? I did go back to my spine surgeon last week and had another MRI done of my spine, which I don't know the results yet, but my doctor seemed baffled by my symptoms. I also have severe hyperreflexia. I wish just once I would go to a doctor and he would say,"I know exactly what to do and this is how we fix it".
  5. Windytalker

    Windytalker Member

    Another possible reason could be "Restless Leg Syndrome". Medications can cause RLS along with certain food chemicals (like MSG and all its hidden forms). I also have nerve damage in my lower back that can set this off, too. My calves/feet burn. RLS comes on quickly and causes the legs to spasm...normally, while in bed.

    Another possibility is Pheripheral Neuropathy...this could also be caused by certain medications. PN does all sorts of nerve damage...mainly burning sensations along with feeling like you're being stuck with needles and pins. Numbness, especially in your feet/hands, is another symptom.

    Just wanted to add these to your list of possibilities. Please don't forgo having an MRI to check out the possibility of MS...

    Hope your find the cause...and soon.
  6. kswebb

    kswebb Member

    My Neuro wouldn't give me the definitive MS diagnosis until I had the Spinal Tap - because I had the protein in my spinal tap that is seen in MS patients PLUS the brain MRI that shows lesions along with symptoms she did diagnose MS. Like so many conditions there isn't one test to say you have it.
  7. Haileyhouse

    Haileyhouse Member

    Thanks to everyone for your input. I will post an update here after I see my surgeon and get the MRI results, if it's okay. It's nice to have a place to come to for information. when for so much of the you start to think, maybe it is just me. Maybe I should listen to the folks that say "just pull up you boot straps"! Problem is, I can't get down far enough to pull them up, lol I shouldn't joke about it; there have been times when my quality of life has been very affected. So thanks again!

    UVAMOMB Member

    Haileyhouse, we must laugh. If we didn't we might all just go crazy! Laughter is a great medicine!