I tried my new approach. I didn’t offer up much before the doctor coughed up her opinion.
The result was still largely the same. It’s my thyroid.
Well, that’s not the total story.
I had a visit with my new ophthalmologist. She didn’t hesitate to tell me what she thought just by looking at me.
The patient point of view, captured by Blackberry
I have dryness, redness, muscle weakness, itchiness, a more prominent left eye, and blepharitis. I also flunked my Schirmer’s test that I passed before. Just for fun, I am now negative for the Sjogren’s antibody. There goes that theory.
Anyway…She did ask me for some history and I gave a few details but this is not like what I have done in the past. The culprit of my yucky eyes? My thyroid. And, just for fun – it will never go away and only get worse once I hit menopause. Up until that point, I gave my thyroid the benefit of the doubt. I didn’t think the gland was a menacing as it is turning out to be. So, I did what any person with thyroid disease would do. I sat down and wrote my thyroid a letter.
I know what you’re thinking but there’s a site called www.dearthyroid.com where people submit love and hate letters to their thyroids. Let me tell you, it was a more healing experience than I could have imagined. Thank goodness for the Internet that connects me with other wonderful people experiencing chronic illness, etc. That connection brings comfort during a challenging time.
On the same day as the ophthalmologist appointment, I saw a general surgeon regarding my muscle biopsy. Again, I took the new doctor-patient stance. I didn’t say much and only answered questions and asked a couple of questions. This is definitely an approach I will be trying to stick with.
Why? Because my other approach clearly gets me nowhere as evidenced by the report I received yesterday from the University neuromuscular specialist.
The University’s impression of me was far worse than I realized and I chalk it up partially to my misunderstanding. I thought my evaluation was going to be super lengthy so I (with uninvited help from my husband) started to give every painstaking detail. They wrote in my report that my problems are related to an underlying depression and anxiety problem. They never even mentioned this to my face nor did they ask me a single question about my mood. Nothing! In their final moments with me, they did suggest I see a psychologist but the reason stated was “to deal with having a chronic problem”. Much different than what was in the report.
I’m not going to deny that I can be anxious and I can get down but my primary care doc has made it clear to me that these feelings are more representative of my circumstances (lack of diagnosis) than anything else. And, my primary doc assures me something IS wrong, no matter what anyone else may say. I trust her. Regardless, it temporarily shook me up to read a professional’s report that discounted my reality. I wonder how many people this happens to each day. I strongly encourage you, as you read this, to keep something in mind. Ask for a report to be sent to you every time you see a specialist. And, if you read something you don’t like, I’m here for you.
Filed under: Uncategorized Tagged: | autoimmune, blepharitis, chronic illness, hypothyroidism, thyroid
When I had to learn to turn on my heels and walk away from supposed experts because of their claimed expertise in other fields, such as psychiatry, I also had to leave THEM all my fears of unexplained symptoms being manufactured by an evil side of my mind.
Forgive me for quoting myself, but here is a short excerpt from my lengthy post of 8/1/2007, as I hope it brings others some comfort:
“…There seemed to be very little if any explanation for my symptoms, except of course for the frequent suggestions of histrionic tendencies (that means I was looking for emotional attention). I think that histrionic tendencies as a diagnosis has its place in medicine where it serves as an explanation for not-yet-diagnosed disorders just as frequently and inappropriately as when drivers only come to a rolling stop at a stop sign. Jeeze, I wouldn’t have to put up with any of this abuse if I would just keep my mouth shut and tolerate my pain in silence. It felt like I was repeatedly being punished for speaking of my pain.
“…Spinal taps to determine the level of my intracranial pressure at times did not make sense and were inconsistent with other clinical observations. Medical explanations ranged from honestly shrugged shoulders to cowardly accusations of Munchausen’s (I was doing something intentional to make myself sick for attention). When it was pointed out that it was impossible for someone to do something to increase their intracranial pressure that much, the response was that I was so intelligent that I could figure out a way. Although I appreciated the compliments about my intellect and creativity, I felt as if I was a criminal and my crimes included: (1) speaking of my pain and (2) being smart.”
I think we get confused between evil and mental illness, and I would welcome mental illness as a cause of my symptoms. I’m an expert at overcoming mental illness! Although the eventual, genetic diagnosis brought its own type of upset, it was a comfort in that I was assured that I was, indeed, not evil!
Susan S.
Susan,
You are an amazing mentor! Thank you for the reminder and for the energy and comfort to keep on going.
FWIW, I went on anti-depressants about three months into my mystery illness, and my depression is totally related to not having a diagnosis or a treatment plan. Most doctors seem to understand that. (My primary care doc is fab just like yours, and SHE definitely does understand!) So, depending how bad your anxiety and/or depression get over your other health issues, it *can* be helpful to get a little chemical aid even if it’s all situational. Does that make sense?
So, how do you ask for a copy of the report? Do you ask the doctor, or just tell the nurse/MA that you want a copy of the report sent to you? I guess I need to do that … although I’m not always sure I want to know what they say/think.
Hi Aviva,
Yes, it makes total sense and I do take meds for anxiety. I wish I could do something to change the mind of the person who wrote the report. I’m anxious alright but I don’t think anxiety can be the cause of my trouble walking. Doesn’t make sense. Plus, my PCP says I’m less anxious overall than I’ve been in the past. Glad you have a great one, too.
I strongly advocate for getting your medical records. This is now, after I learned my lesson. About 10 years ago, I had thyroid and leg problems. I went through a bunch of tests and docs and really have no idea what the end result was because I was young and scared and didn’t know what to do. I bet the info would be helpful now!
I get my reports these ways:
1. When going to a specialist, I ask that they send my PCP and myself a report. I say it more than once.
2. If I haven’t received a report or believe there may be more reports/results that weren’t sent to me, I call or go in person and ask for a copy of my reports. I typically say I need them for another appt. I often get a lot of questions but I stick to my guns, sign a form and get my records.
3. Ask my PCP for copies of everything she’s received and results of tests she’s done. I will say that I have seen her somewhat shield me from other doc’s reports. In these cases, I have not pushed but would if I felt it was in my best interest.
Hope this helps! Thanks for reading and I hope you’re having a comfortable day!
This just happened to me the other day… again. At the end of an appointment with a new doctor (that my new Endo wanted me to see) he started asking me questions about depression.
It’s funny, because after awhile you become an “expert” at being a patient and know when a doctor is just going through the motions. When this doctor (actually a P.A.) ordered a 12 lead EKG, I knew he was just going through the motions. I didn’t say anything though and when the EKG came back normal (as I knew it would since I have had several over the past year) he immediately went to the “it must be in his head” mentality. Very frustrating.