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Great gratitude for information leading to a diagnosis - repost

Good morning :-)  if you responded to a previous post of this last night please repost your response.  Here is most of my previous post:  

As you can tell from my question title, I have issues.  :-)  My symptoms started 2 months ago and are almost all intermittent.  Before this started I was active and  happy with my life (euphemism for, no I am not depressed or suffering from mental illness).  As of Jan 5th or so, when this started, my life has become very limited.  I can go to work, get home, but not much else.  Everything has gone on hold, projects, social activities, exercise, adventures, you name it!   I am a 40 something female, living in the northern part of the US, in reasonably good shape, not overweight or with other health issues.  

My symptoms came on with fatigue, buzzing and lightheadedness, weakness, and very heavy legs and feet.  It is a unique feeling, like being in an elevator going up, with the floor pushing up on my feet.   Some of the major symptoms are:  Mental fog, numbness that comes and goes, tingling in feet and legs, sometimes feet are very cold.  Lightheadedness but no spinning.  Sometimes my hands get weak, and the right hand was paralyzed for about 20 min a few times.  At first I had a lot of hot and cold flashes but lately these have subsided.  Some days I feel almost normal, but more often I feel "marginal" and some days downright dreadful.  During a given day, I may feel lousy in the morning but move up to feeling "marginal" in the afternoon.  one odd symptom is what I think is called hyperacusis, where hearing causes nervy feelings especially if the sound is sudden.  that is a more recent item.  I have also noticed this with touch.  I do have blurry vision, mostly in the left eye, also intermittent.  The most exercise I have had since this started is one day I walked 3 miles on the flat.  Some days I can barely walk from my car to my office.  I have missed some partial days of work due to feeling very lightheaded and in one case went to ER because it did not feel like I could push out my words - not enough breath if that makes sense.  Another fun item - constipation.  There does not seem to be urinary issues, no nausea except when I am very lightheaded have felt it briefly.   No fever.  one ear and sinus is plugged, weirdly the sinus can become unplugged sometimes.   I also haven't had a period since this started and am still a bit too young for menopause.   I've also got an intermittent burning pain in one upper inner arm that has been going on increasingly for about 2-3 years.  the only things that seem to be consistent are my joints ache, and that is more recently.  

I was checked with a brain and cervical spine MRI (but no lower spine MRI) and they were clear except for the nasal polyp and one very small dot that was near the edge of the brain that the doc thought was nothing based on how many symptoms I had.  She also did the electroshock nerve tests of my hands and arms and found no issues.  This was during the first week of symptoms, not sure what it would show now.  I think now two middle toes of my left foot are permanently numb - maybe I should have neuro recheck the electroshock on my toes?  also am getting neck and collar bone area pains which are new.  

other checks that have been done with no findings:  Complete blood count (twice), chest xray, B12 and iron, viral checks like Epstein Barr.  I had a lyme test several years back but not recently. heartbeat/vital signs seem ok.  My next step is a visit to the rhuemetologist.  But with all the central nervous system stuff, not sure if this will be particularly informative.

anyway... If you made it to the end of this litany of angst, I am already grateful to you.  Any suggestions will be welcome and if yours helps me get the answer, I will be infinitely grateful.   Help me become my pre-2014 self again!  

dayhiker
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Avatar universal
Many vitamin and mineral deficiencies can cause an array of symptoms, including those you mentioned.  I know you had B12 and iron checked, but what about Vitamin D, folate, copper, thiamin (B1), Vitamin E and magnesium?  Read about symptoms of deficiencies and see if any really hit home.
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Avatar universal
    Wow!  I am so sorry that you have so much going on!  I am glad, however, that you are scheduled to see a rheumatologist.
    The symptoms do sound like either Lyme disease or Multiple Sclerosis.

     Have you read/heard about how diet sodas and sugar-free gum can cause symptoms of Multiple Sclerosis?  Just in case you are eating/chewing these - don't.

     That little spot on the brain stem could be a scar on the myelin sheath.  I sincerely hope not - but a lot of progress has been made on M.S.

     I don't know what else to say except that I wish you well and that I hope the rheumy is able to find whatever is making you sick.
    Wishing you the best

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