Hi all. I've been "loitering" for some time now on this and the Lupus board. Thought it was time to say hello & just "unload" in a safe place - even though I'm not sure where I should
be posting or if
I should, since I have no definitive diagnosis.
I'm 41 and I've been experiencing odd symptoms most of my adult life. In November, it all came to a head - my vision in both eyes was disrupted 90% or better by crazy flashing followed by mental confusion. Since then I've started cataloging past and present symptoms. I've had other visual disturbances, speaking and writing gibberish, "icy" spots in my head, vertigo, dizziness, tingling & numbness in extremities, restless leg syndrome (noticeable onset teen years), lost the use of my right hand (numbness, tingling and muscles wouldn't work) for a few months, "floating" feeling and a sense of being "brain dead", an intermittent feeling of inability to take a full breath - as if ribs are in the way, crazy itching lower legs and inner thighs - no rash or other obvious cause, overactive bladder & leaking urine, short term memory problems, fatigue, heat sensitivity and cold intolerance, trigeminal neuralgia, constant muscle aches - and for the past two years I've had repeated mammograms trying to find the reason for excruciating pain involving my armpit and someplace I can't pinpoint under my rib cage - to no avail. I have arthritis in my neck and back. Lately, I'm just plagued with a feeling like the flu (arm muscles just ache and ache) and at times my entire left side hurts to touch. My ribs feel like I was in a fight & lost, badly. I am exhausted and could easily sleep for 24 hours at a time - I've come close to doing so once in each of these past three weeks. It's unfortunate, but now I'm about to schedule surgery for a Total Laparoscopic Hysterectomy and bilateral salpingo-oophorectomy due to possible Stein-Leventhal syndrome and repeated hemorrhage. I say possible Stein-Leventhal because I have all the symptoms of PCOS - except the hormone markers. Thanks to what I've read here, I knew enough to let the surgeon know that I may have Lupus - hopefully, we can avoid any nasty complications.
I started reading these boards when an MRI from November showed T2 signal hyperintensities, one right frontal subcortical white matter and the second left frontal white matter periventricular. I've since had an ANA of 100 and my B12 is 234, which from what they tell me is borderline low. I'm now taking 1000mg B12 every day & baby aspirin (to prevent stroke). I see the neuro again in April. It's due to these boards that I've become educated enough to know that I can ask for, and receive scans & lab reports & know what types of questions to pose to the docs. I'm still feeling like I don't know much, but it's improving
For the longest time, I too was thought to be experiencing "depression" etc... I got so sick of hearing that. I am not depressed. I am frustrated and tired of being tired. I have a bubbly personality and am quick to laugh - it's just getting harder to sustain that side of me when I feel like I'm always ill.
From reading here, it's obvious I'm probably quite a way from diagnosis. While I accept that, I selfishly am grateful knowing that I am not alone or absolutely bonkers
Just one final thought before I retire for the night -- thank you to all who have posted before me. You've given me much to think about, to look into, and to know that no matter what's coming for me I'll be OK. God Bless...