The Queen of Optimism

I am so grateful for my primary care doctor.

I could put some cliched statement about rain and rainbows here but won't.

I was a little nervous about seeing Dr. F. today.  I haven’t seen her since before I went to the Endocrinologist back in April.  After numerous appointments and differences of opinion, I didn’t know what to expect from her.  I’ve always had a great deal of respect for Dr. F. and knew she wouldn’t let me down.  However, I did wonder if she would be the first person to confirm my own insecurities and just say it out loud: “You’re nuts and there’s nothing wrong with you.”

Quite the contrary.

In a relatively short time, we were able to go through everything that has happened over the past nearly two months.  The Hashimoto’s diagnosis (even though I don’t have the antibody), the FNA biopsy results (Colloid adenoma/goiter), the initial PM&R doctor visit, the University Clinic visit, the 2nd PM&R doctor visit, and my current physical therapy center.  I don’t know what shocked her more, the talking angel story of physical therapy or my treatment at University.

Dr. F.’s thoughts:

1. Go to physical therapy and say, “It’s not working and you said I only have to pay if it worked so I’m not paying!”  I don’t know that I have it in my heart to do that.
2. University treated me inappropriately.
3. My frustration about my lack of diagnosis may come off to other doctors as a general frustration and that may lead them to not take me seriously.  She said this was wrong of doctors but that it happens.
4. To some doctors, if they can’t figure it out the problem, there is no problem.

She also said what I needed to hear:  “You’re not crazy.  I know crazy and you’re not it.”

I appreciate her candor.  She also told me the story of a patient of hers.  She had been seeing the wife for a few years and the wife would talk about the problems her husband would have and that doctors always said it was nothing.  Finally, the husband came to see Dr. F.  In her examination, it was clear something was wrong.  She asked him if he had been tested for MS and he said he had been tested several times over the past 30 years and was told he didn’t have it.  She sent him to a local medical facility for a spinal tap as an alternative test for MS.  The neurologist there did not want to do the test.  Dr. F. called and insisted.  The spinal tap diagnosed his MS.  Dr. F. expressed that it’s not always just one test to confirm a diagnosis.  She also expressed that when a patient has been living with a condition for a long period of time, the symptoms can become what is considered normal for them and the patient misses opportunities to share more in depth important history information.

I asked her point blank – can we do further tests for Myasthenia Gravis?  She had no problems with this.  I assured her I was not trying to self diagnosis and she reassured me that it was okay for me to look into options for figuring out what’s wrong.  I got blood drawn for the MuSK antibody (Thanks, Pegikaye!!).  It takes 14-25 days for results.  She also wants me to get a muscle biopsy.  My PM&R doctor mentioned this in the first visit.  Dr. F. was humble enough to mention that she wants to know if the PM&R doctor has a suggested referral as well as the location on my leg for the biopsy.  Dr. F. apologized for not knowing everything about MG.  I told her I appreciate her honesty and that I don’t expect her to know everything about every specialty.  She is also going to do some research about MG and MS.  I mentioned somewhere in this blog that I feel like Dr. F. thinks I have MS.   I was spot on in my perception   She wants to see what she can do for a differential diagnosis.

We’re back on track.  I also told her that I keep this blog and that I have been helped by information shared with me through this medium.  I also told her that I feel it is incredibly sad that so many people go through what I am going through with getting essentially no help from specialists.  She and I joked about writing a book together about how to work with a non-textbook patient.

Lastly, I told her that I don’t expect the MuSK antibody to come back positive.  I’m too atypical.  And, she agreed:  “But that doesn’t mean we won’t get to a diagnosis.”  I laughed and said, “Well, all of this atypical stuff makes me a better person or builds my character or something, right?”

This post is my reminder that I am not at all crazy as confirmed by my kind, generous, caring doctor.  Hopefully I can let go of all of my self-doubts.  Thanks again, Dr. F.  You truly are the best PCP I could ask for.

Filed under: Uncategorized Tagged: | autoimmune, health, muscle biopsy, undiagnosed chronic illness