New Doctors & Diagnosis' - Health Update

With all the fun I've been having "opinion" blogging recently I realize I haven't done a health update in about two weeks! If you missed it, I recently wrote a few pieces for The Huffington Post and The Mighty! My favorite of which was a feature on The HuffPost Healthy Living Blog called "An Open Letter To The Person Staring At My Medical Devices" This article was a great way to educate individuals on respectful conduct when it comes to meeting patients like me out in public... and guess what? Staring is actually okay... I just have one request! Follow the link above (in pink) to take a read. 

The last couple weeks have been an amazing step forward in my treatment! I started my weekly Saline Infusions which add some extra fluid and salt to my body as it cant seem to retain them currently. This issue could be a by product of a few different causes: 1. Autonomic Dysfunction 2. Malabsorbtion or 3. An Endocrine Malfunction. Currently we haven't pinpointed exactly why I am not retaining the salt my body needs to function, but upping the dose is a good step forward no matter the cause! So every Thursday I drive myself down to the local hospital to be infused with sweet saline! Being well hydrated does the body a world of difference!

I also had my long awaited appointment with Washington State's top Dysautonomia Specialist! This doctor deals with malfunctions of the Autonomic Nervous System, which regulates all the bodily functions not consciously directed, such as breathing, heart rate/beat, blood pressure, temperature regulation, papillary changes, dilation of blood vessels, urinary/deification regulation, the digestive process, and much more! Over the years since I have started showing symptoms of this complex systems malfunction I have received a plethora of diagnosis all falling under the "Dysautonomia" umbrella; Postural Orthostatic Tachycardia Syndrome (POTS), Pure Autonomic Failure, Vasovagal Syncope, and Orthostatic Hypotension, were just a few that many forms my physicians expressed were possible. After a few months seeing each physician they would express their uncertainty in diagnosis and send me to another doctor. The ANS is complicated, and elaborate in its working, composed of two main nervous systems; the Sympathetic Nervous System, and Parasympathetic Nervous System. Each system is responsible for basically the exact opposite function, one induces the bodies "fight or flight" response, and the other induces the "relax" response. Each separate form of Dysautonomia affects the patient differently, though treatments are very often all the same. Receiving the correct form of diagnostic form is helpful however, as some forms can be more aggressive and require extensive treatment. After going over my symptoms, and doing a few in office exams over the period of two hours this amazing physician was able to express a form of Dysautonomia that matched every one of my symptoms; Autonomic Neuropathy. 

According to The Mayo Clinic: "Autonomic Neuropathy occurs when the nerves that control involuntary bodily functions are damaged. This may affect blood pressure, temperature control, digestion, and bladder function.The nerve damage interferes with the messages sent between the brain and other organs. Signs and symptoms of Autonomic Neuropathy vary based on the nerves affected. 

• Dizziness and fainting when standing caused by a sudden drop in blood pressure.

• Urinary problems, such as difficulty starting urination, incontinence, difficulty sensing a full bladder and inability to completely empty the bladder.

• Difficulty digesting food, such as feeling full after a few bites of food, loss of appetite, diarrhea, constipation, abdominal bloating, nausea, vomiting, difficulty swallowing and heartburn.

• Sweating abnormalities, such as sweating too much or too little, which affects the ability to regulate body temperature.

• Sluggish pupil reaction, making it difficult to adjust from light to dark."

These are just a few of the most clinically found symptoms of Autonomic Neuropathy, though it is certainly not limited to this list. Essentially it is the total failure of the nervous systems that control your body's functions. This dysfunction can be caused by many different sources: Diabetes, infectious diseases such as Lyme, direct injuries to the nerves, or in my case an underlying autoimmune disease that has caused irreparable nerve damage. There is a particular form of Autonomic Neuropathy called "Autoimmune Autonomic Ganglionopathy" that is actually caused by the bodies immune system releasing an antibody that directly attacks the ganglion receptor responsible for these systems. This is extremely rare and is characterized by the same symptoms as regular AN . The diagnostic criteria is a specific antibody found in the blood. Though currently my specialist believes that is not the case for me, he is interested in running the blood work since I have severe Aidie's Pupil (pupils fixed in dilation), a typical attribute of that particular form. He has also requested that I preform the classic Autonomic Function Testing (list of procedures found in pink link) within the next month, along with some biopsies of my feet to asses the extent of damage done to my nervous system. Once we have fully evaluated the situation and have a firm understanding of my case we will be starting a new medication that helps control these systems called Mestinon.

And if you are wondering, yes, having pupils that are constantly dilated is really uncomfortable! Bright lights bother me extremely, I cant focus on things close up for long periods of time, and I have near constant headaches because of this. It's honestly a wonder I can blog or use my phone! haha I take lots of breaks to re-affix my eyes. 

Last, and definitely most exciting, was the appointment with my new (but actually old) Rheumatologist! Back in August 2014 I received the devastating news that my favorite Rheumy, and really the only one who has ever made any progress with my case, was leaving the practice I attended. After a year away she has returned and I couldn't be happier! When I received the news she was returning I waited patiently for months to covet her first appointment! I called every week in September to secure a spot asap! lol I am sure the scheduling desk hates me ;) But I am happy to report my dedication payed off and I was the first patient she saw back on her first day in clinic! 
Withing the first second that office door opened we were both all smiles! It was so refreshing to see this familiar face! We met for about an hour which consisted of reviewing the past year since she has been gone. That was quite a whirlwind of emotion, especially when I had to recall all the events of my month long hospitalization in December that nearly took my life. I think she was surprised to see how far I have progressed within such a short time frame.
 Hopefully next Thursday I will have a solid game plan for the next month or so; I am so tired of playing the waiting game! I feel it is all I do these days... but at least it's only one week this time!