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Old 11-08-2011, 06:18 PM #1
Ravenred Ravenred is offline
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Join Date: Nov 2011
Location: Northern IL
Posts: 31
10 yr Member
Ravenred Ravenred is offline
Junior Member
 
Join Date: Nov 2011
Location: Northern IL
Posts: 31
10 yr Member
Confused Dx by mistake - what's next

Hi everyone - I've been reading the threads and want to say thanks - been learning alot and quick! - thank you all

Wonder if anyone else has been in my shoes:

Was following up with vascular doc for supposed carotid stenosis; he redid CTA - go and talk to him and he tells me it's an over-read (thankfully!) BUT my thymus is large and "lumpy" (his exact words) and it shouldn't be considering I'm a 45 year old female and btw what about your eye? I tell him my eye usually droops when I get cluster headaches (nasty things those) but now it just droops on its own for the last 4-5 months and gets worse by end of day to the point I've been considering changing my name to Popeye from all the jokes and comments I get about it at work... he starts asking more questions.... then tells me go see neuro and GP, then calls my GP.....

I go see GP: GP orders what seems like a ton of blood tests, including an antibody test -tells me everything is negative, heck even my cholesterol is good... but sends me to new neuro (old one retired) anyway as I haven't followed up on the cluster headaches in a year (hey remission is a wonderful word from heaven when it comes to those nightmares!)

So I go see new neuro; neuro does exam, during which I fall twice and get double vision when he does his "follow the finger" routine and can't force my chin to my chest against his hand... asks me bunch of questions - to which I finally tell him I thought it was all apart of getting older and have just been coping with "wearing out sooner" than I use to - and no I wasn't happy that my get up and go and gotten up and left without me but it happens as you get older right? And besides Claritan D or more specifically ephedrine when I could find it usually helps and yes I know it isn't good for me but I have sort of gotten desperate to get even ordinary things done and at least it helped me get thru the work day without falling over, needing a nap or turning into Popeye before lunch when things got bad

Neuro starts getting all excited and tells me he's setting up a tensilon test - okay have no idea what that is but if it gives me my go go, not to mention my eye and face back - I'm game...

Do the tensilon test at the hospital; watch as nurse and neuro are pointing at me and each other going "that's positive , that's positive, WOW is that positive"......(my eye, whole face and neck strength /balance came back and I felt like a million bucks- for about 3 minutes then I became a member of the wax museum again with half my face dripping off...) At which point neuro tells me "You've got myasthenia gravis, make an appointment to see me, have a good day...."

So now I'm scheduled to see him Thursday and
1. trying to figure out just what myasthenia gravis is
2. wondering what else I've been "ignoring" or working around that is actually a part/symptom of MG.... silly things like I've lost my voice 3 times this week (no sore throat- but can't get any volume even if I try yelling) or that I feel like a wrung out dishrag doll with wood arms that is pretending to be a weeble wobble more often than not lately, and the thought of walking up stairs is enough to make me sit down and think about if it's really necessary cause I'm not sure I'm going to catch myself the next time my legs "go rubber"...

I'm wondering too what I should ask him - what about "lumpy" (thymus)... did I "mask" this or worse yet did I trigger/cause it with the ephedrine (and why does it help short term?- although I grant it definitely is not lasting as long as it did a month or two ago) .... and I for the life of me cannot figure out his reaction - all excited to figure out what was going on then a lackidaisical "oh just make an appointment to come see me".....

any thoughts? advice? Or anyone got a flashlight or roadmap to help me figure out where the heck I'm going next with this?
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