Monday, January 7, 2013

Trips to Immunologist and Hematologist

In case you're not a regular reader or it's just been too long since I've talked about it, I have been on a mission in recent years to get answers.  I've gone from specialist to specialist for three main reasons:
  1. to seek relief from something chronic (e.g., asthma, allergies, IBS, PCOS, etc.),
  2. because a doctor/specialist referred me, and/or
  3. to rule out conditions or find out if there is something wrong with me that can be treated...just in case I don't really have CFS/ME.
A lot has happened since my last real post. I've seen an immunologist and a hematologist in recent months, though not much came of the visits.  Well, that's not entirely true.  Something did come of the hematologist visit, but you'll have to read the rest of the post to find out (or you can just skip to the end). 

First, the immunologist.  I decided to see an immunologist to rule out major immune system problems because I've had problems in the past with healing (e.g., complicated tonsillectomy, complicated UTI), as well as unusual reactions to different things (e.g., drug allergies). 

I didn't realize how hard it would be to find an immunologist who saw adults.  Typically, doctors in the US who are allergists are also trained in immunology, but I wanted someone who focused on immunology first and allergies second.  I was hoping the doctor would have enough experience that he or she could spot unusual or less common conditions in adults.  Most of the doctors in my area who called themselves immunologists worked in pediatric departments of hospitals and only saw children. 

After searching high and low, I finally found a doctor who used to be a pediatric immunologist at a hospital before starting his own medical practice.  He now sees children and adults.  His office is about an hour away from my house, but I felt the visit would be worth it.  When I went to see the doctor, he took a thorough medical history and listened carefully to everything I had to say.  He took his time with me.  I think the appointment lasted well over an hour! 

The doctor explained that from my medical history and the way I described my problems, he did not think I had a significant immune system problem; however, he said something mild could be possible.  The doctor ordered a battery of tests, from the usual CBC to more specialized tests on my immune system that I'd never had done before. 

I won't keep you in suspense.  My immune system appears to be normal.  All the tests came back within normal parameters -- except for my red blood cells.  The abnormal results were expected because I have thalassemia minor; I am a genetic carrier for the thalassemia trait, which is a type of anemia.

Though I had told the immunologist that I have thalassemia minor, he was concerned about my blood test results and strongly urged me to see a hematologist for a deeper look at the way thalassemia minor might affect me.  The immunologist believed the thalassemia minor could be the cause of my fatigue. 

I was shocked because I'd always been told that thalassemia minor was symptomless. 

I made an appointment with a hematologist as soon as I could.  This doctor took a thorough medical history and ordered a bunch of tests to check out my blood and to determine what type of thalassemia minor I have.  I found it interesting that the doctor himself actually went to look a look at my blood cells with a microscope while I waited in the exam room. 

I'll spare you the suspense again.  Based on the blood test results, the hematologist said that he did not believe the thalassemia minor was causing my fatigue or other symptoms.  He said my blood cells looked good for someone with the thalassemia trait and that I was not particularly anemic. 

I was actually disappointed because I thought I was about to get answers as to why I've physically struggled for so long. 

One really good thing came from the visit to the hematologist, however.  He was fascinated by my health history and really seemed to empathize with me.  He revealed to me that during his medical training, he had once worked at the National Institute of Health in their rare diseases department. 

He said that the NIH has a program that brings in patients who have not gotten a diagnosis that adequately explains their constellation of symptoms.  The NIH runs about a gazillion tests on the patient and tries to come up with a proper diagnosis. 

The hematologist said that once I receive my nuclear DNA test results from the mitochondrial disease specialist, he would be willing to recommend me for the NIH rare diseases program if the results come up inconclusive. 


I won't be getting my nDNA test results back for at least another couple of months, but this doctor gave me a little glimmer of hope that I might finally understand my uncooperative body.  It's important to note that there is no guarantee that I would be accepted into the program even if recommended by this doctor, but I was touched that the hematologist took me so seriously and understood my need for answers. 


Anonymous said...

Alyson, thank you so so very much for posting this and telling us about your experiences with doctors.. this type of info can be very helpful for those of us who're too sick or don't have the financial means to see different specialists.

I wish you the very best!!!

alyson said...

Hi Anonymous - Thank you so much for the comment!!! You are one of the reasons why I blog. When I was at my sickest, I couldn't hold a full time job for two years. I spent 12-20 hours asleep in bed every day/night. There was no way I could afford to see all these specialists at the time; I could barely afford to see a regular doctor.

It's only in recent years that I've been able to physically and financially afford this journey for answers. I am very grateful for the opportunity. I'm definitely not rich now, but I choose to spend my money on health just as others my age often choose to go out to eat or shop. I'm also fortunate to have good health insurance through my job.

Thanks again for your comment. It really meant a lot to me. I wish you the best!

Patrick W. Calvin said...

Very intriguing news about the NIH program. I hope you get accepted!

alyson said...

Thanks, Patrick!

Anonymous said...

Hi Alyson HELP I am desperate 23 year old female suffering for years finally got through college got a job and worried that I may lose it due to health just missed 3 days as I wa so sick. I have seen immunologist and hematoligst for years all are normal. My symptoms -swollen lymph nodes in neck that come and go every few months, unbearable headaches, sore throats and extreme fatigue to the point I can't work. Any ideas?

alyson said...

Hi Anonymous - I'm so sorry you are suffering so much. Congratulations on finishing college and getting a job; that is quite a milestone for someone suffering from chronic health problems! I know that's not much consolation when you're feeling so crummy, but I still wanted to acknowledge your achievement.

I am not a doctor, so I can only make suggestions based on my own experiences. I'm assuming you've been checked for the "usual" problems (thyroid problems, lyme disease, mono, anemia, other nutritional deficiencies, etc.), but if not it might be worth it to see your general practitioner to ask for these tests.

Have you been tested for autoimmune diseases (i.e., ANA and/or other tests) or seen an endocrinologist to check for endocrine imbalances? (Your general practitioner can order the ANA test.) I myself have a positive ANA, and my endocrinologist diagnosed me with pre-diabetes. It should be noted that I am not overweight and eat a very healthy diet, so I do not fit the typical profile of someone with pre-diabetes.

Have you seen a neurologist for your headaches? Finding the appropriate medication to help with your horrible headaches could improve your quality of life. In my own experience, I had to try several different headache and migraine medications before my doctor and I found one that worked for me.

You might also want to find a doctor who specializes in ME/CFS. Here's a website that helped me find a doctor: I no longer see my ME/CFS doctor; however, she was a great help when I first got sick.

My heart goes out to you, and I wish you all the best!