You guys, I feel like I’ve been waiting a lifetime for this appointment. So as my story goes, I had been dealing with some progressive health issues now for nearly 10 years. I had gone from doctor to doctor, doing labs and all kinds of other tests just for them to come back normal and for me to start back at square one. The doctors did not have any direction with me considering “normal” results, so they chalked it up to my symptoms being all in my head.
These symptoms may sound familiar to you, but this was what I had been experiencing daily:
- unrestful sleep
- post exertional malaise
- extreme brain fog – to the point where I had trouble concentrating, memory recall, formation of speech and even trouble reading.
- GI upset
- Pain in my arms and legs
- Crazy dizziness
As a result I went through bouts of depression and anxiety because I was told there was nothing wrong and it was all in my head. Essentially, you’re either delusional or depressed… Nah….
Because I was not getting results with my doctors, I did my own online research. I know you’re not supposed to self diagnose, but I had no choice. So essentially, my research lead my to believe I had ME/CFS based on meeting the diagnostic criteria and it being an exclusionary diagnosis.
Scouring the internet for the research and resources, I finally found the youtube channel called ME/CFS Alert. I nearly watched everything on Youtube I could find, then finally one day in July 2018, there was a interview done with Dr. Systrom out of Boston’s Brigham and Women’s Hospital. That day I called to make an appointment and the soonest available appointment was 9 months out.
Today I had my first appointment with Dr. Systrom, and it almost seemed too easy. I didn’t even have to explain why I was there, because as he could guess from my past labs, I was there due to my ME/CFS symptoms. He completely validated my experience and immediately went into next steps. He explained what we were going to do, how everything worked (although I didn’t really understand it), and the safety of everything. He did confirm that I did meet the criteria for ME/CFS, but it was an umbrella diagnosis and that they would be looking for a few underlying diseases that contributed to all of these symptoms. The most validating thing he told me was that there were treatments and that I would be back to “normal”.
What? Back to normal? I don’t even know what that feels like! But I’m looking forward to that.
At the beginning of the appointment I did a basic exercise breathing and exercise test. This was to give them a basic idea of my health at that point, and the result was normal. Following the appointment, I had to give blood and do a 24 hour urine sample. Below are the ordered labs.
I also made an appointment for a skin biopsy called a small fiber polyneuropathy, which measures neurite density in the epidermis. That was a few weeks out from the initial appointment. The last test made was 3 months out for the advanced CPET. Watch the video to understand more about what this test is, but it is a special invasive exercise test that they do in their labs where the patient bikes for a few minutes while there is a catheter in the radial artery in your wrist and through the internal jugular vein. He explained that this procedure is very safe will feel like no more than a bee sting. That I can handle!
Overall, they will be looking at problems with preload failure, systemic oxygen extraction (when the muscle does not take up oxygen properly), vascular disregulation, and intrinsic mitochondrial dysfunction in the limb skeletal muscle.
So that’s where I am today on my recovery journey with ME/CFS. It is super excited new and I am so grateful to have found a local doctor who not only specializes in ME/CFS recovery, but has treatments that have given patients their life back!
Did you find any of these “ME/CFS Recovery with Dr. David Systrom: Appointment #1” helpful? Share your experience below.
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Thanks. How has your progress been with him? I had to wait almost a year to schedule an appointment 3/19/2020!
Well I’ve only had that first appointment with him and have completed the labs and skin biopsy so far. I still have the advance CPET to do in August, so once that is finalized they will be able to tell me what underlying diseases I have and start me on a treatment plan. I’ll be sharing another update after that appointment. – Yes, it is a long wait for him, I was waiting 9 months. It is worth it though! I would definitely recommend calling often to see if they have any cancellations. 🙂
Great information! Quite a few detailed tests, any interesting results?
With all due sincere respect, if your ‘exercise breathing and exercise test’ was normal, how in the world could you possibly have ME/CFS?
The exercise test is a simple step ladder test, which came back with relatively normal results. (They measured my breathing and heart rate while stepping up and down on a box. It was non invasive.)
As you know though, patients with ME/CFS can be tested in many various ways and tests and labs come back “normal”. This does not mean someone may not be ill, but that they haven’t be able to test and measure the illness correctly with those labs. Additional testing was necessary to determine more concretely, some issues going on with my body. I do write in this post and a second post that they did determine issues after doing a skin biopsy and iCPET (The invasive exercise test that directly samples blood from my heart each minute I exercised, providing much more valuable data.)