Acute Pain attack and scared

[Auntkat]

Hello to all,
I have been having what I would call total body pain attacks for the past 3-4 years. I do have a couple of disorder that have been diagnosed, one being Ehlers-Danlos Hypermobility type that is a collagen disorder. However, the symptoms I am having do not fit with current diagnosed disorders. The most recent episode was yesterday. They start with a few days or weeks of stiffness in my neck and shoulders ( I do have mild cervical disc degeneration) then I woke up with a headache yesterday. I have a history of migraines and carry imetrex with me. The pain of the HA was in the back of my head and the top. I had been have pricking and tingling sensations down the left side of my head and shoulders for a few days before too. Headache increased to migraine level with nausea and I took imitrex with no relief. It did not even feel like a migraine but I did have photophobia and visual disturbances (still have this today). It progressed to a burning pain down the length of my spine and spasms in various muscles. I had to take my strongest narcotics and lorazepam to get any relief. Today I am left with blurry vision and a vise like feeling around my torso. My neck is still stiff. I will have these "attacks" irregularly but usually every 3-6 months. Yesterday I thought I was having a stroke but was too ill and too cognitively impaired to realize I should have gone to the hospital. Besides I have little faith in the docs around here. I am really, really scared and have no idea what this could be except maybe MS. Please, please help me. I have an appointment in September to see my opthamologist. I don't know who to see about these attacks.

[Anonymoose]

Hi auntkat,
Those symptoms don't scream ms to me but we are all different. Have you had a brain MRI or seen a chiropractor? Might be some clues there.

Sorry for what you are going through. I hope you find the reason and treatment quickly.

[CaliReader]

Hello Auntkat,

Sorry you're going through all this. Burning pain down your spine, might be l'hermitte's sign, a neurological symptom. Or not. Visual disturbances might be optic neuritis. Or not. Vise like feeling around your torso might be the MS hug, what neurologists call 'banding'. Or not. The combination suggests to me that a neurologist could help you find out whether this is or is not MS.

Disclaimer. I am not a doctor, just a patient. There is also no age limit on stroke. Young and old people get them. I would get checked out, sooner rather than later.

Best.

[Auntkat]

Thanks for the replies. I am still fighting the thumping in my head that wants to come back and tightness around my chest. How do you see a neurologist? Can I just call or see my internist? I can't go to chiro because of my other disorder. I tend to dislocate bones. I have had MRI of cervical spine but not brain. I just don't know what else would come and go like this. I am mostly symptom free In Between flares. I have been have some muscle spasms in my feet and legs to the point that I have to elevate blankets & sheets on bed so they don't touch my feet or they will spasm.