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| General Health Conditions & Rare Disorders Discussions about general health conditions and undiagnosed conditions, including any disorders that may not be separately listed below. |
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05-26-2014, 10:49 PM
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Newly Joined
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Hi, I have had dysautonomia for over 20 years and it is a genetic condition . About a year ago I found out I have EDS which is a connnective tissue disease. On my recent blood tests I was low in D, iron, ferritin and a little anemic along with a positive anti-striational antibodies test which was part of a test for myasthenia gravis but the other tests for MG were negative.
I have seen a neurologist and they did not give me any kind of new diagnosis. The last few years I have been very dizzy and over the past year I have been lightheaded with vertigo and passing out daily if I try to do much. I have also lost a lot of strength in my legs and have problems swallowing. I also had a skin biopsy that showed significant degenerative changes of the subcu tissues. At this point I do not even know what kind of doctor to see. I am on IVs weekly and will begin IV iron this week but since i have been getting progressively worse, i do not know what to try next. Any ideas would be appreciated. |
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05-27-2014, 02:51 AM
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Hi Dino68,
You have a lot happening. I am not familiar with your conditions except for the dizziness. That in itself is challenging. Please be careful to not injure your head. Hopefully someone here will have an idea on a doctor for you. Peace and wellness, Jace 
__________________
. *TBI with mild to severe damage November 2012 from car crash. Stroke with hemorage & 4 clots in veins in brain Feb/Mar 2015. *Vestibular damage, PCS, hypercusis, severe visual processing and tracking issues, short term memory loss, headaches/migraines, occipital neuralgia, cognitive issues, neurological issues, brain fog, brain fatigue when over stimulated, twitching, vertigo, neck issues, nerve issues, PTSD, personality change, Since stroke left side weakness, rage, worsening of vestibular problems, recall, speech, memory. *Can't drive or work. Have done occupational therapy, cognitive therapy, physical therapy. Learning work arounds, and strategies to be competent in daily life. Change your attitude/perspective changes your life. As TBI survivors this is a vital part of our healing and living. *Working on getting to know and accept the new me. |
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05-27-2014, 09:09 AM
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Grand Magnate
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 Welcome dino68.
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Kitt -------------------------------------------------------------------------------------------------------- "It is what it is." |
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05-28-2014, 02:26 AM
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Newly Joined
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It looks like you have quite a bit going on also. The dizziness is the worst though. Thanks for your reply.
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