Tuesday, September 8, 2015

In need of a Mayo Miracle

Next week, I will be traveling to Jacksonville, Fla., to be seen at The Mayo Clinic.

I cannot tell you what high hopes I have for this trip - for a diagnosis - for relief.

But here are my concerns - many of my symptoms are nonspecific or -worse - can be "easily" explained away by anxiety.

For example, my hands and feet are so sweaty that my shoes sometimes slip off, as do my rings.

Most websites equate this to anxiety/panic attacks.

But this seems to happen to me multiple times per day at random. And seldom when I am doing anything remotely stressful.

I am presently on an antidepressant and anti anxiety medication, yet, even when I am just sitting reading a magazine or watching tv - activities which require no stress whatsoever - my hands and feet will have pruned as if I have gone swimming for a long period of time.

Additionally - my difficulty eating - the feeling like I must force myself to eat - and the necessity to burp multiple times afterward, lest I feel nauseus. Many doctors say nausea is a sign of stress. And then move on.

I thought, once my eyesight started going in and out (I can see fine at certain parts of the day, and at other parts of the day my vision goes blurry or becomes very light sensitive, as it would before developing a migraine. Several doctors have looked at my eyes, declared them healthy, and then dismissed this symptom, and the lightheadedness associated with it...but I feel this symptom could be key to my diagnosis.

I have burning in my hands and feet. And, if they do not feel like they are burning, they feel like they are spasming or weak. My legs feel like they might not support me when I walk. This feeling comes and goes.

I continue to have uterine bleeding - the symptom that first presented itself. As this symptom is undeniable (no doc can say the bleeding is all in my head), I have been hopeful that the continuous bleeding will point doctors in the direction of what is wrong. To my chagrin, however, scans - CTs, MRIs, sonograms - have found nothing conclusive other than fluid in the cervix and thick endometrium that doesn't seem to slough away, despite constant bleeding.

Birth control pills have not stopped the bleeding.

As all of you who have been following my saga know, I have seen numerous doctors, some of whom have been kind, others of whom have written me off. Even my PCP, who called Mayo on my behalf, called me in for "fatigue" and "limb pain."

I feel and fear I am not being listened to. I feel and fear I am not being heard. I feel and fear I have something that is causing many symptoms - causing my body to react in a haywire fashion - and that the medical community will continue to disbelieve me or think it psychosomatic because the MRIs don't show tumors or some other enormous red flag.

I reach out again, asking please for someone to help.

In the past few days I have been running a temperature in the 99s - 99.4, 99.6 etc. - and my resting heart rate has been in the neighborhood of 120 beats per minute. Average resting heart rate should be between 60 - 100. That I cannot seem to get mine down despite attempts at relaxation and meditation (and even sedation) may be one of the reasons I feel like I may shake clean out of my skin.

Doctors keep saying these signs are not "impressive" - meaning they are not heightened enough to be considered emergent. (Emergent heart rate, for example, is around 140 beats per minute.) But while my vitals remain non-emergent, I nonetheless feel my body is falling apart.

Between the clamminess and the shakes and lightheadedness, I feel as if I have a flu from which I cannot recover. Perhaps an infection or virus that does not show up on scans.

I know I have asked before, but please let me know if you know of someone who can assist me.

I tried to get a new PCP today - one highly recommended by family - but he said he couldn't get me in for three months...

I fear what shape my body might be in in three months.

My current PCP even said this weekend when I called her, unable to leave the bed because of the shakes and the sweats and the burning in my extremities (no to even mention the bleeding) and she told me, "If you have something bad enough, eventually your illness will show up on one of our scans."

Is that the best I can hope for? To become so violently ill that no one could deny I am enduring something truly terrible?

I fear this.

And I fear Mayo.

I fear Mayo's scans will turn up nothing more definitive than the scans I have had these last two months.

I fear that this is what my life will be...

I fear that I will not be able - psychologically, physically or financially - to continue this quest of attempting to get me back to the perfect health I enjoyed mere months ago.

For those who pray, please pray Mayo finds and fixes the problem. My greatest fear at this time is not that Mayo DOES find something...it's that it DOESN'T...and that this nightmare continues for me.

Some would shirk at sharing of this information, but I hope the more people I tell, the more chance there could be that someone else has experienced something like this and can help.

If you have already offered suggestions, thank you.

For others, please look over my symptoms - feel free to share them with friends who could help - I am truly sick. The sickest I have ever been in my life. And despite various medications, I do not seem to be recovering.

Please, please, help if you can.


  1. Hi Erin, I'm so sorry to read of how terribly sick you are. Just reading some of your symptoms i was wondering if anyone had mentioned Lymes disease? The sweatiness, dizziness, and limb pain made me think of that. I'm praying for answers and healing. Lots of love and warm thought your way my friend!

  2. I have asked to be tested for Lyme disease. And that's kind of a long story. But long story short, the neurologist who ordered the test for me refuses to give me any test results unless I make another appointment at his office - and pay the copay of $50. Healthcare ladies and gentlemen...

  3. Please email me at meghanporter79@yahoo.com I just wrote a long post to you but it didn't go through. I believe I have some helpful & hopeful information on the exact tests you need and where to proceed. You can email me tonight if you want that's ok because I know the feeling of having no answers...meghan