Met with the Hemo. Little crazy being in a Cancer Research Center, but I processed it. Had some nice EARLY morning conversation with other female patients in the waiting room. They said I looked to young to be there and they hoped it wasn't ''anything serious''. I didn't disclose the reason I was there.
Had ANOTHER nurse misguess how much I weigh and then tell me ''you must be all muscle, because i would have never guessed''. Good little up moment in my day.
So the hematologist, set up my treatment plan for the coagulant problem.....good, good. Got that one solved. She's not convinced that is my only problem. In her words, "your symptoms are very lupussie, very MSsie."
By the way, she looks like the actress that plays the lead in ''My Big Fat Greek Wedding'' and has the same energetic, we are going to figure this out, you hang in there attitude that is contagious. She told me, ''your story isn't over, we will fix you.''
She then proceeds to get on her cell phone and call my Rheumo and Neuro directly! By George people, why can't I get service like this all the time! Ten minutes of doctor to doctor phone and tada.....
I get to have a spinal tap! Yeah me! Truth be told, it's the only way to definitely rule out MS. My understanding is that MS puts a specific cellular debris in the spinal fluid. That is what they are looking for. After having two epi's with my kiddos this should be cake.
I am unusually calm about all this. Maybe it's because we've finally hit the end of the line. There will be a diagnoses soon, I will have my journey's starting point.
This morning I told myself to feel lucky. Lucky, that today I felt well enough to get out of bed, clean my house, play with my kids. There is a big part of me that is still scared and worried, but the calm is breaking through.
One day at a time. One day at a time.
Wednesday, October 24, 2012
Thursday, October 18, 2012
And another Theory
UGH!!!!!
This diagnosis process is so frustrating and emotionally taxing. We are now start month 5, yes, month 5 of tests and doctors and blood.
The Rheumo was more personable yesterday, so that was a saving grace for me. He says all my Lupus numbers are borderline positive so we need to 'wait and see'. Ok, I can do that. I was also told that my uric acid is double the normal level, so the Gout that runs in my family is headed my way. Just one more health similarity I have to my dad.
So now, it's on to the Hematologist next week. When I explained the order to start taking baby aspirin daily to the Rheumo and spots on my brain he said, ''oh, positive lupus anti-coagulant tests, vasculitis. hmmmmm.'' Lupus anti-coagulant is NOT lupus, just a misnamed blood disorder. The vasculitis refers to the hyperintensities on my brain MRI, where blood flow has been cut off and caused the little dead spots of tissue.
The sticky blood problem I might have comes under a couple names. APS/Hughes Syndrome and is only recently discovered in the early 80's. It comes with whole host of potential health problem, but there is treatment. Oddly, it can mimic MS so they have found many patients misdiagnosed with MS with actual Hughes Syndrome.
Many of my symptoms line up with this problem, so maybe we've found the next theory. I just want an answer, want to know what I'm fighting so I can move forward! The emotional limbo is torture, more so than any problem I'm having.
This diagnosis process is so frustrating and emotionally taxing. We are now start month 5, yes, month 5 of tests and doctors and blood.
The Rheumo was more personable yesterday, so that was a saving grace for me. He says all my Lupus numbers are borderline positive so we need to 'wait and see'. Ok, I can do that. I was also told that my uric acid is double the normal level, so the Gout that runs in my family is headed my way. Just one more health similarity I have to my dad.
So now, it's on to the Hematologist next week. When I explained the order to start taking baby aspirin daily to the Rheumo and spots on my brain he said, ''oh, positive lupus anti-coagulant tests, vasculitis. hmmmmm.'' Lupus anti-coagulant is NOT lupus, just a misnamed blood disorder. The vasculitis refers to the hyperintensities on my brain MRI, where blood flow has been cut off and caused the little dead spots of tissue.
The sticky blood problem I might have comes under a couple names. APS/Hughes Syndrome and is only recently discovered in the early 80's. It comes with whole host of potential health problem, but there is treatment. Oddly, it can mimic MS so they have found many patients misdiagnosed with MS with actual Hughes Syndrome.
Many of my symptoms line up with this problem, so maybe we've found the next theory. I just want an answer, want to know what I'm fighting so I can move forward! The emotional limbo is torture, more so than any problem I'm having.
Monday, October 8, 2012
This Diagnosis
Well, we are getting closer to knowing WHAT is going on with me. The doctors have been acting like vampires for the last 4 months taking copious vials of blood. Not kidding here, at least 65 vials have been drawn since the middle of June. And then there was redrawing of blood, because the first blood was tainted when it got to the lab.
There's the insurance now asking the Rheumotologist to please call them personally because they want to know WHY a third MRI has been ordered. This one is just of my right hand. The big ones were the head(in July) and then the spine MRI about three weeks ago. The spine one I was in a tube, like a coffin for two hours. No so fun. They tried to brighten it up a little by putting star stickers like you get in kindergarten on the ceiling of the tube. Bwahahahaha! Still not fun.
The Rheumo has absolutely no bedside manner. Very abrupt and ''ok, see ya when we get that blood work back have a great day''. Yeah, I'll just keep hanging on the bare threads that remain of my bravery, thaaaaat'll get me through another month of the unknown. Maybe I have him to thank for sending me over the edge into the panicked abyss again. It was awesome, two whole days I don't remember and two really fuzzy ones last week. Better now, meds are good. I think I might keep them for a while.
Hope you all can keep up the the abbreviated specialist names because I can't spell them and neither can spell check here on blogger.
I still have to see the hematologist because the latest blood panels for Lupus have come back positive. There is some small percentage that they could be wrong, but ''probably'' not based on my blood work and symptoms according to the Neurologist. So we are GUESSING that the culprit is Lupus at this point and not MS. For some reason Lupus seems doable and MS is just scary SH**. Sorry, I normally don't cuss but I'm passed correctness right now. Four months in emotional limbo does that to ya.
The Hema is suppose to call me, hasn't happened yet. Might start pestering them tomorrow, ya know whole California move is looming and what not.
Going back to the therapist to talk out the new more life altering craziness. Rich went with me for the first time last week. Can't love him enough for that. Lots of the big life questions to get straightened out. Existential this and that. Learning to live with dependencies and weakness. Deep stuff. The kind of uncomfortable I hate to feel, but probably need too.
So, that's the diagnosis so far. In short, we still don't know, think we might have an answer, but in the meantime trying to maintain mental and emotional stability.
There's the insurance now asking the Rheumotologist to please call them personally because they want to know WHY a third MRI has been ordered. This one is just of my right hand. The big ones were the head(in July) and then the spine MRI about three weeks ago. The spine one I was in a tube, like a coffin for two hours. No so fun. They tried to brighten it up a little by putting star stickers like you get in kindergarten on the ceiling of the tube. Bwahahahaha! Still not fun.
The Rheumo has absolutely no bedside manner. Very abrupt and ''ok, see ya when we get that blood work back have a great day''. Yeah, I'll just keep hanging on the bare threads that remain of my bravery, thaaaaat'll get me through another month of the unknown. Maybe I have him to thank for sending me over the edge into the panicked abyss again. It was awesome, two whole days I don't remember and two really fuzzy ones last week. Better now, meds are good. I think I might keep them for a while.
Hope you all can keep up the the abbreviated specialist names because I can't spell them and neither can spell check here on blogger.
I still have to see the hematologist because the latest blood panels for Lupus have come back positive. There is some small percentage that they could be wrong, but ''probably'' not based on my blood work and symptoms according to the Neurologist. So we are GUESSING that the culprit is Lupus at this point and not MS. For some reason Lupus seems doable and MS is just scary SH**. Sorry, I normally don't cuss but I'm passed correctness right now. Four months in emotional limbo does that to ya.
The Hema is suppose to call me, hasn't happened yet. Might start pestering them tomorrow, ya know whole California move is looming and what not.
Going back to the therapist to talk out the new more life altering craziness. Rich went with me for the first time last week. Can't love him enough for that. Lots of the big life questions to get straightened out. Existential this and that. Learning to live with dependencies and weakness. Deep stuff. The kind of uncomfortable I hate to feel, but probably need too.
So, that's the diagnosis so far. In short, we still don't know, think we might have an answer, but in the meantime trying to maintain mental and emotional stability.
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