How to get a diagnosis?

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Date Joined Sep 2014
Total Posts : 1
   Posted 9/2/2014 8:26 AM (GMT -6)   
I have a strange collection of symptoms, including severe migraines, loss of balance, numbness and tingling, episodes where I feel like someone turned out the lights, general weakness/tiredness, inability to concentrate or remember things (I always prided myself on my wonderful memory!), and this awful, violent myoclonus (not hypnic jerks, but full blown body "crunches" that have been so harsh as to tear my knee tendon) that will go on for hours - all of this is episodic.

Everywhere I research, MS is mentioned as a possibility. My MRI turned up negative, but when the neurologist asked for a contrast MRI (and they only did my head, not my brain stem or spine), the procedure was not approved by my insurance company as "medically necessary." (And if I went back in my history, there are all sorts of other indications of auto-immune issues, such as arthritis starting at about age 20; menopause at age 38; abnormal reactions to medications, +ANA, HLAB27 marker, etc.)

I've taken a video of one of the myoclonus episodes, which finally raised my rheumatologist's concern.

I'm not sure what this is: MS, lupus, a non-specific auto-immune disease. How do I move past the "neurotic female" assumption and get some real medical attention? I find it very difficult to function when I either have a migraine, can't see, haven't slept in days, or hurt all over.

Thanks - I appreciate any suggestions!

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Date Joined Jan 2007
Total Posts : 3571
   Posted 9/2/2014 6:49 PM (GMT -6)   
Hi Nancy,

I'm sorry you find yourself in diagnostic limbo. Getting an MS diagnosis can be a long and frustrating ordeal. The fact that you have a clear MRI seems to indicate something other than MS. Contrasting agent doesn't help to see brain lesions. It only indicates whether or not the brain lesson is active. I no longer do the contrast as it is extremely hard in your body, especially kidneys.

MS doesn't tend to be episodic. All of of MS symptoms are permanent. They came and stayed. I have had MS vision issues that resolved slowly over a period of 4 months.

I'm glad you got some of your symptoms on video. That may be helpful. I'm also glad that a doctor has seen it and is following up.

MS also doesn't typically show up on ANA blood markers.

I am not sure what to recommend. Just keep at your doctors for answers. Ask them pointedly what do they think is causing all of your symptoms. If they say they don't know then ask them to refer to someone who might know.

Can you appeal to your insurance about further MRI testing? Will your doctor appeal on your behalf?

Keep us posted!
Diagnosed with MS July 2006

I have no lesions on my soul and so I live with no limits.

Forum Moderator

Date Joined Apr 2012
Total Posts : 7515
   Posted 9/4/2014 10:07 AM (GMT -6)   
I received my correct diagnosis by finally going to John Hopkins University in MD. I now go to Thomas Jefferson Univ in Phila.

My suggestion is to make an appointment at the closest major teaching hopsital in your tristate area.

Moderator - Depression
Be still and know there is Peace.

Kabir says: "Student tell me, what is God? He is the breath inside the breath". from the poem Breath.
DX: reverse Trigeminal Neuralgia;Cluster headaches; Atypical face pain;Hemicrania Continua; raynauds;complex PTSD; recurring MDD,disassociative disorder;
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