Hi and welcome,
I'm going to re-post your question with breaks so it can more easily be read, you may not be aware but pwMS who have visual and or cognitive issues find reading and comprehending large blocks very difficult and sometimes it's impossible.....
"Hello everyone, I am brand new. Please dont think that I am crazy from the get-go. My main goal is to figure out what is causing everything. Its often hard to explain things because I have a hard time coming up with words. And yes, I've struggled with anxiety but I honestly dont feel that this is anxiety.
Ive had episodes of spasticity three times before in the past two years, one with LOC while in OR prep that is documented in my medical record, and I am in pain all the time. But not knowing where it is coming from and seeing that the tests so far ( MRI without contrast, EEG and EMG) have been normal only adds to my anxiety.
My ultimate goal is to figure out what this is, and what makes it happen. I dont want medications, I only want to know why and how it is happening so that I can know better how to make sure it doesnt happen while I am driving or while I have the children in my care (mainly while I am alone with them). If there is some water therapy or something that I could do to make it easier or to make the pain and Full Body spasticity not happen, I just want to know what it is and what I can do.
I have been keeping a log of signs and symptoms and the pains in my body, sharp pain shooting/stabbing through my legs and arms, even flank pain and pain that feels like my ribs are in a vice grip, like someone has their arms wrapped around me squeezing tightly. I have been experiencing as well alot of times that my skin hurts, all over my back, neck and chest. Pain that is odd to describe but it feels like razor blades across my skin when someone touches me, or even when my clothes touch my skin. This happens to me alot. I have a hard time being touched because it hurts so much.
I am just starting to notice a pattern between all of these "symptoms" or whatever they are, and it makes me wonder if it may be spinal cord related? I just dont understand how I can be having these things, the pain and everything, with normal tests that show nothing.
The episodes of spasticity all over my body, (which scares me the most). The headaches that feel like someone has hit me in the head with a baseball bat. The sharp pain that takes my legs out from under me. The tremors and numbness in my face and hands and feet. The hypersensative nerves and the constant skin pain..sorry for the long intro but you all have any idea of whats going on? "
I'll get back to you asap with a response........JJ
ps i'm the MS community leader
Sorry i missed you'd posted an update....."I have read about it and the doctors have ruled out literally everything BUT MS. My PCP feels that I could have MS and they only did one MRI without contrast. And they haven looked at my spinal cord or anything, other than the mri without contrast."
Technically MS is 'not' one of the neurological condition that can cause episodic spasticity all over the body, all over anything is one of the typical red flags pointing away from conditions like MS, because of how symptoms from brain and or spinal cord lesions presents and develops over time, what your experiencing wouldn't be typical for a neurological condition like MS.
I think you'll find they were looking for anything specifically abnormal with your brain, a brain MRI without contrast would still of shown up brain lesions if you had them, the contrast helps distinguish lesion type and helps identify if the lesions that are found are old demyelinating lesions or new lesions, new lesions light up like the lights on a Christmas tree with contrast. EMG's help diagnose muscle disorders, nerve disorders, and disorders affecting the connection between nerves and muscles and the EEG records electrical patterns in your brain which helps to diagnose conditions such as seizures, epilepsy, head injuries, dizziness, headaches, brain tumors etc but normal MRI's, EEG's, EMG's do not rule out the possibility of someone having seizures, doesn't mean they were seizures either, just that normal doesn't rule seizures out!
Just a thought but if what prompted you to have the MRI, EEG and EMG was partly because of it being a medically observed episode during the OR prep, what you experienced at that time is different to the other 2 without LOC, the observed OR prep episode could of been opioid induced muscle rigidity...
"Opioid-induced muscle rigidity usually occurs with large doses of potent opioids given intravenously. These include drugs such as fentanyl, alfentanil, sufentanil, and remifentanil. Morphine and meperidine can also cause such reactions, but this is not common with the doses used during balanced anesthesia. There have been published reports of muscle rigidity occurring with relatively small doses of highly potent opiates such as sufentanil and alfentanil. The phenomenon of muscle rigidity is usually seen during induction of anesthesia when opioids are the sole or primary anesthetic agent. All the skeletal muscles are involved. The rigidity starts within 1 or 2 minutes of opioid administration and typically lasts 10 to 20 minutes."
Hope that helps........JJ