Health Update: June 2nd, 2011
Today I had my appointment with a autonomic neurologist that I have been waiting to see since January (a 6 month wait) - but a well worth it wait :)
- I had my appointment with the only autonomic neurologist in my state -
My appointment was at 9:45 and I was there until 12:00! I can't rave enough about the care I received. First, they were attentive, efficient and CARING.
They really understood me.
(Understanding is half the battle!)
They really understood me.
(Understanding is half the battle!)
The resident came in and did the typical 1,000, health questionnaire/symptoms and all that jazz.
She was asking bizarre things, even as far as...do you or anyone in your family have high arched feet?
: / Surprisingly I have huge arches!
(...funny thing is I still don't know why she asked that, ha-ha)
(...funny thing is I still don't know why she asked that, ha-ha)
Anyways, after she was done, she conversed with the doctor and they were back in my room in no time. He did a very thorough neurological exam, and asked great questions.
He agrees with my diagnoses a year ago that was given my my cardiac electrophysiologist of POTS (Postural Orthostatic Tachycardia Syndrome) but still wants to do his own specific testing
I am just highly encouraged - while I already knew my diagnosis, this appointment was about finding a doctor who understood POTS completely -
[I knew he was a winner just by the way he was talking to me]
Yesssssssss, I thought in my head...I am finally being understood completely.
He said "we are going to do a lot of tests" - there are a couple things I want to rule out first though
He is doing testing for the following:
{1}
Pheochromocytoma (I am being sent to an Endocrinologist)
This is to rule out a type of tumor - because my blood pressures vary drastically(extreme highs and extreme lows) along with my typical POTS symptoms, it can be a sign of this condition, too.
This is to rule out a type of tumor - because my blood pressures vary drastically(extreme highs and extreme lows) along with my typical POTS symptoms, it can be a sign of this condition, too.
{2}
EDS (I am being sent to a geneticist)
Ehlers-Danlos Synrome
They are checking for type III joint hypermobility type and type IV, vascular type.
Ehlers-Danlos Synrome
They are checking for type III joint hypermobility type and type IV, vascular type.
**I have been trying to tell doctors that I think I have EDS for so long
{3}
Today I had 11 vials of blood drawn
(ahh, that was an absolute killer & I will be set back for days because of all that blood being taken)
-They are checking for SO many specific things, Cortisol (Adrenal Insufficiency) is one of them
{4}
24 Hour Pee Test ; )
{5}
EMG (Electromyography) NCV (Nerve Conduction Velocity)
{6}
Chiari Malformation
{7}
Autonomic Testing
It is really cool...he is the one who does ALL the testing. This doctor doesn't want anyone to work with patients like me (POTS/Dys), he does everything himself, so he can see exactly what is wrong/what isn't and he will know specifically how to treat things. **HOW NEAT**
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Also - he made sure to say that if I needed anything before my appointment with him next month, to just call anytime. (SCORE!)
He is giving me standing orders for fluids!
That is amazing, since most doctors don't understand this protocol as a POTS treatment
People with POTS have low blood volume, so while they might not "technically" be dehydrated, fluids build up the blood volume in an individuals body - in return, helps with all the symptoms!
People with POTS have low blood volume, so while they might not "technically" be dehydrated, fluids build up the blood volume in an individuals body - in return, helps with all the symptoms!
He did again say (which I already knew) that medicinal treatments will only help the cardiovascular aspect of POTS, and not all the other Autonomic troubles that effect the rest of the body...this just helped my mom further understand that there is nothing we can do to control the awful symptoms that come along with dysautonomia :(
This appointment succeeded all my expectations
I feel validated.
I feel understood
I know that there is not a cure, but there is hope.
I feel validated.
I feel understood
I know that there is not a cure, but there is hope.
.I finally have a doctor who will help me through this long road in all aspects that POTS effects me.
It is important to remember to stay optimistic - you never know what life may throw your way :)
If you have any questions regarding what I talked about with POTS, my doctor, or anything...
PLEASE feel free to contact me @ ambivalentbliss(at)gmail(dot)com
♥
erinj0
4 comments:
Sorry you had to have all that blood drawn, that's never fun, but at least this doctor sounds like he knows his stuff and you might finally get somewhere! :) This sounds very promising! Certainly a lot of tests to go through but hopefully it will be worth it in the long run. Another crazy tidbit we have in common-high arched feet! Lol. Did he say anything about the significance of developing POTS after your wisdom teeth removal? Keep me posted on your progress and test results!
glad you got all the information you wanted and needed ! I have VERY high arches too !!!! I have had a lot of similar tests to you as I too go to neurologists every so often !! Some are not a walk in the park ! but oh well, stay strong and hope everything goes well xxxx
@Defy Gravity - ...He didn't say anything about the significance of the wisdom teeth : / I think he was jut trying to process everything! haha
@Vicky - Thanks girl! sounds like you have things in common with me & Kristina too(high arches!) :)
I'm glad you get help! Even though that's a lot of blood to take "at once".... <3
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