Should I see a neurologist again?

[AdoptSiblings]

Because of something I read recently, I'm starting to think that I may have been foolish not to have been back for a neurology consult in 12 years and would like your opinion.

I'm diagnosed with Fibromyalgia, Erythromelalgia, Raynaud's Phenomenon, various eye problems, and had a toxic multinodular thyroid that was treated, leaving me hypothyroid. I have episodes of tinnitus and dizziness when I move my head and I feel weak when in hot weather. My symptoms are not at all under control, but I only have severe neurological symptoms during flares every 2-4 years, which last 3-6 months. My breathing gets funny during the flares. I always feel bad, but the flares are so much worse. My Autoimmune Disease tests are always negative.

A neurologist 12 years ago suspected I could have MS, Lupus or Vasculitis but the bloodwork, MRI and EMG were negative. I had an aunt that had MS.

I recently read that before MRI's they tested people for MS by putting them in a hot bath. If they quickly became extremely weak, it was MS. I had an ER visit only once in the past 12 years, and it was because I took a hot bath 4 years ago, instead of my usual tepid shower, for the first time in years and was almost immediately so weak that I could barely unstop the tub and get out. I crawled on the floor for a while, couldn't stand up. They did a brain MRI or CT at the ER and bloodtests but didn't find anything ecxept a tiny bit of dehydration. The weakness only lasted an hour or so.

Should I go back to a neurologist?

[AdoptSiblings]

My update is that I've now been diagnosed with a "Heritable Disorder of Connective Tissue, NOS" by a geneticist who specializes in those. She's still trying to determine which one I have. Also she suspected I have a Mast Cell Activation Syndrome, which is common in people with HDCT's and mine is now confirmed (by my allergist) by my great response to treatment. And the geneticist diagnosed Orthostatic Intolerance (blood pools in feet when standing...). Neuro diagnosed small fiber peripheral neuropathy and bilateral peroneal neuropathy. My Erythromelagia appears to be secondary to the HDCT (eg, Ehlers-Danlos, Marfan Syndrome, Stickler Syndrome) and the mast cell disorder.

There's not much info online about the neurological symptoms of EDS or other HDCT's, yet in my online EDS communities almost everyone has some neurological problems with it. I think the old bathtub incident was because of dysautonomia/dehydration and possibly the mast cell activation problem (one of my triggers is heat).

I hope some who may read this later will be inspired to not give up on getting an accurate diagnosis, even if it means traveling out of state and finding experts on your own. I am doing much better with proper treatment!

[squirtatious]

Meant to say "keep us posted"

[squirtatious]

Trust yourself you should have gone back years ago. Take time to find a reputable dr if you don't already have one and explain what you explained here and get a referral if need be. Keep s oosted, take care