This post is an update on my neurology consult, discussed here: Recovery is My Full-time Job
Anymore it seems every time I go in for a consult with a specialist, I’m in for a real mind-fuck. I guess I shouldn’t be surprised, I am consulting with neurologists J. It took me several days to process the experience of meeting with the neuro-muscular specialist before I could decide exactly how I felt about him and the chances that he’s going to give treating me and my ailments. In part, that’s probably because I suffer from some pretty significant cognitive deficits and by the time I hit his office, I was in full flare up mode from the immense mental and physical stress of the experience. It’s also because he’s clearly uneducated about Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and wasn’t exactly open to engaging about it or my suspicions surrounding a possible alternate or comorbid diagnosis of Ehlers Danlos Syndrome(EDS): However, he did take all of my symptoms seriously and had some good alternate diagnoses to explore, so I agreed to undergoing more tests, some of which will be excruciating, but them’s the breaks. What’s most interesting of all to me, was my emotional reaction to all of this.
I can already tell you the battery of blood tests he had drawn have come up completely negative. This is not at all surprising to me, as I have yet to have a helpful blood test and that’s pretty normal for someone in my position. The tests I do expect to be more telling are the excruciating ones that come in September and will be testing my nerve and muscle tissue. The diseases he is looking at are Myasthenia Gravis (MG), Sjorgren’s, various Mitochondrial diseases (ME/CFS is a mito disease, but he didn’t know that, either), and he did the blood work to make certain I don’t have Lyme disease since I’m not certain anyone has crossed that off the list (Lyme is commonly misdiagnosed as ME/CFS).
I’m fairly certain that the tests I’ve been through already have ruled out Myasthenia Gravis, Sjorgren’s, and Lyme, though I’m not completely sure about MG, as I know muscle biopsy is used as confirmation. Muscle biopsy can also be helpful for ME/CFS diagnosis and tissue biopsy is definitely necessary for diagnosing other forms of mito, so I’m all for getting it done, pain be damned. Hell, I’ve had a kidney biopsy. What’s a little muscle tissue?
What I’m not looking forward to is another EMG, an even more painful kind than I had before. The first was excruciating enough. In fact, I thought the whole time about the human subject review board and how it ever got approved for testing let alone for regular use on patients. This type of EMG involves a series of shocks in the same place rather than just one and then moving on to the next appendage. Apparently, this tells them something about signal interpretation or…. Who knows. I was wearing my ME/CFS/Fibro brain. Yep. I’m so thrilled about this, having fibromyalgia and neuropathy and all, which means that my pain responses are set to super-duper-mega-sensitive. Perhaps this is why I feel it’s inhumane. I forget everyone doesn’t feel things the same way we do sometimes.
As much as I’m not looking forward to these tests, they need to be done so I can either get a change in diagnosis and get treatment –OR—finally know for sure that I do have the correct diagnosis and if I can’t get this new doctor, who while misinformed about ME/CFS seems quite intelligent, on board to treat me for ME/CFS, then it’s time to move to a place where someone will. Of course, I still need to find someone who can say yay or nay to the EDS suspicions, too.
By the time we got through my symptoms at the appointment, I was a worn out dishrag. I just had nothing left. I’d had an attack (right in front of the doctor, yes!), I was exhausted and starting to get confused, so when he went for the door, all I had the thought to do was to hand him all my very carefully chosen research, which he looked at like a venomous snake, and try not to cry when he left the room. We never discussed my medications, next steps, whether or not he was actually taking me on as a patient, nothing.
I don’t operate well this way. Unless it’s a book or play, I like to know what’s coming next. It also left me in the position of having absolutely no pain meds so I had to go begging my GP like a dirty druggie (that’s how his office always makes me feel, though he doesn’t). As a result, the GP cut down on some of my meds, but as a bargain he gave me a steroid. I don’t know if that’s good thing or not. I’ve been hearing more and more about steroid use being bad if you have EDS. If that’s true, the last rheumatologist really wasn’t been good for me, or I should say even worse than I thought.
Anyway, I wish I had thought to say, “I know you’re skeptical of the ME/CFS diagnosis, I was too. And of course if we can uncover another diagnosis that comes with established protocols and treatments, I’d be truly thrilled. If that doesn’t happen, though, I hope you’ll read this information and see the advances they’ve made in research and understanding what ME/CFS is and the treatment options I’ve gathered from specialists around the world.” That’s what I meant to say. That’s what I’d prepared to say, but somewhere in the shuffle, cognitive dysfunction ate my simple little presentation and I was left with “Here. I got this cookie for you.” One of so many reasons I hate this fucking disease.
So, I’m going to email him and try to explain my position, quite possibly with the very same words from above (why reinvent the wheel) and hope that he hasn’t already thrown out all my carefully curated research explaining the cause and effect of so many of our symptoms or the wonderful treatment options that went with them. Of course I still have them all, so I can reinvent that wheel, if I must.
Actually, I sort of do plan to reinvent that wheel for my readers here, so you have that research and can use it however you wish; give it to doctors, use it to educate yourself or a loved one, use it to silence a denier, share it with the community at large. They are all great studies and treatments that come from valid sources. I’m not going to do it in this post and I may not do it all in one, but I probably will write a post about how I chose what I did and why. There are more and more rare diseases cropping up all the time and it’s important for all patients, but especially those who fall into one of the rare or challenged disease categories to be well informed and ready to advocate for yourself (or have someone who is willing to do it for you).
The thing that I really had difficulty grasping (and took me days to admit) was that I had a bit of a splinter in my paw over looking at alternative diagnoses. This surprised me. In the past, I’ve always gone to new doctors seeking other possible diagnoses first, treatment second. I hadn’t realized a shift had taken place somewhere in my mind, a shift that meant that I had come to accept that ME/CFS was mine and somehow, unfathomably, I belong to ME/CFS.
I know, this sounds insane right? Who wants to be married to a crazy fucking disease that’s robbing you of your mind, your motor control, your ability to sometimes leave your bed? I sure don’t, but I guess somewhere between fighting for our dignity and respect and defending the validity of the disease, while making friends who also carry the same diagnosis, I have finally come to feel like I am part of something again and for a moment that something very much felt threatened. I don’t want to lose my pack by being forced into a new kennel. But I know logically that the real friends I’ve made aren’t friends based on diagnosis alone. Heck, my closest gal pals don’t have any overlapping diagnoses with me. It’s all silly, really.
But then I realized it’s not that alone. It’s also about the number of hours I’ve dedicated to the study of the disease, my commitment to the advocacy of its patients, the prospect of the idea that I’ve spent 15 years without a proper diagnosis. Those things are huge. Of course it’s going to be significant, emotionally and otherwise, if I do end up with a different diagnosis, no matter how good or bad that news turns out to be.
Another thing I want to do as a sort of a spin off from this experience is to spend a little time showcasing some of the illnesses this new doctor chose for me. Some of them are phenomenally similar and I can really see why he chose them. These are peeps that should definitely be part of the spoonie spectrum if they aren’t already and sharing in the support of community (and very well may struggle to find people with their own diagnosis). Precisely one of the reasons I didn’t dedicate this blog solely to ME/CFS, FM or even just neuro-immune diseases.
Finally, I will also be writing a post about how to best prepare for a consultation which will include some mistakes I made both preparing and during this visit, but also things I did right. And of course I have several other examples to draw from, so I feel like I’m becoming a bit of an expert on the subject. I’ll include more discussion in that about how I could have possibly prevented the level of fatigue and post-exertional malaise I experienced after the appointment, as well. And maybe someday I will actually get to why I think I have EDS, and make some of the fascinating comparisons I’m finding between it and ME/CFS. So many fascinating things to write about, so few spoons!