Neuro Consult=Mind Blown

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!

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13 thoughts on “Neuro Consult=Mind Blown

  1. So sorry! It seems all doctors are the same these days. I just don’t understand it! So very frustrating. I think they keep us sick so they can bill Medicare or ins more and more. It is a sad state that our healthcare system is in. If I could afford it I would just diagnose myself and take all the herbs and holistic meds I could. Hang in there! (((hugs)))

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  2. Thank you Raja. For the most part I do treat myself. If I were to rely on their drugs alone, I would either be drugged beyond reason or struck with eternal migraines, raging auras, unable to tolerate sound, light, or food. Honestly I doubt I’d be alive for the severity of the dysautonomia and infections I have. Not that I’m trying to throw myself a pity party by any means, it’s just incomprehensible that they allow people to suffer this way endlessly and I know lots of people don’t find the solutions I have. And it’s all thanks to the “modern miracle of western medicine” You and I are on the same page. I not only think we need socialized medicine to reform things in thus country, Medicare should cover ALL effective medicines, no matter if big pharma came up with them or not. Thanks so much for your support and encouragement. I hope you’re doing alright.

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  3. I don’t bother any more. I deal with what I can behaviorally and with preemptive rest, know myself as well as possible, get the stupid Celebrex confirmed by the pain specialist, and add potassium daily to my food.

    Doctors I only deal with if I have other problems. I did a round of orthopedic surgeons, said no to more surgery (they couldn’t believe I handle the pain, just want to walk better, which they wouldn’t promise), and finally found one who has a PT person who actually helped. I will see her again a couple of times, do as much of the back strengthening as I can take, and have been figuring it out myself anyway.

    I have a primary – she knows nothing, learns nothing, but does things like ‘well visits’ and immunizations and regular blood work. It will have to do.

    Until someone solves this – and I mean cause AND treatment – count me out. I can sort of live on the edge of life as I am. I cannot cope with doctors wasting my time and emotions.

    Good luck to you. I don’t know what to say, and I’m so sorry you have symptoms that require you to keep interacting with these… don’t even know what to call them. Hope they can help with some of the symptoms that bother you.

    I owned CFS a long time ago – and I’m happy to give it up any time they figure it out, but not until then.

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  4. Yes! this brought tears to my eyes that #1 I am not the only one this happens to #2That I and We are all suffering so much. I can tell you one thing this has ignitied a fire in me and when I get well I will be the #ErinBrokovich of this town and the corrupt healthcare system. There are way to many things that have happened to me at this hospital to let go! I am ok John and I are stressed. they got my MRI results around 5ish tonight and they didn’t call me. so we wait yet another night. I am sick tonight sweating it was hot here today and Seattle doesn’t believe in AC for some reason. I guess because it doesn’t get that hot but it is always 20 degrees hotter inside than out so…ugh and I sweat non stop anyway so hot days are not good. even seattle hot! Light always prevails and I know I am worthy of the light. that keeps me safe in trusting that the universe or god has a plan. (((Big hugs))) to you it is all just a dream anyway right!

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  5. Alicia, I could agree with doing things your way my dear… happily, if I could bring any stability to my condition that would allow me to live any semblance of a normal life. PThereis a chance I have finally found the right mix of mitochondrial healing/ energy producing drugs to achieve something close to an acceptable existence but until they prove themselves effective longterm, my search goes on. I have done nothing over the last 15 years but decline ever further no matter what I try, until I have lost my mind, my muscle, my ability to function. It got so bad for a while I couldn’t remember how to spell basic words. I was magna cum laude, I held a president’s fellowship in grad school and I couldn’t spell flea. I’m not kidding. I’m not exaggerating. Like I said, the mito drugs are working wonders at the moment, but I’m 44 years old and by no means ready to give up on my life, which is exactly what I’d be doing if I gave up looking for answers, because every time I do, I end up back in that state drooling on my sheets 24/7. I won’t stop pushing until I can live a life that doesn’t make suicide seem like a reasonable means of escape.

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  6. I’m sorry you’re suffering so much. Your story really touched me when I read about it. Let me know what your MRI reveals. I will keep my fingers crossed that it serves up neatly packaged answers that have already brilliant solutions! Being hot can seriously exacerbate your symptoms. Can you at least have a fan? I know it won’t work at the hospital, but what about window or room units? The greenies will just have to kiss your 😀 I mean I’m a huge fan of slowing global warming, but concessions have to be made for those of us who feel everything 5 degrees hotter. I love your enthusiasm, Raja. Keep fighting. Sending you strength and warm healing hugs!

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  7. Sadly, I know people like you are, if anything, UNDERreporting their symptoms. I am so sorry.

    In your circumstances I would do exactly as you – and many of the people in my FB support group – are doing. Because I’d have no choice.

    And I certainly couldn’t write, even if I spent all my time on it.

    I keep thinking of the days of the AIDS epidemic, and of Ebola ten years ago, and how bad it was for the patients.

    I just can’t believe that I, someone who worked very hard to get the pedigree that would let me work at the best place in the US for fusion research, and then intended an active retirement, can do nothing of what I planned, and am instead dependent on so many people.

    And that my family doesn’t even really get it.

    Please keep working on yourself when you have the energy, and reporting back from the trenches.

    Because the alternative is worse.

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  8. It is beyond tragic to me that so many suffer this way. You, me, all of us, at whatever level of physical/mental ability we’re trapped at, wavering or unwavering, waiting for the day that science will wake up and see the truth of our plight. Even then, it’s going to take them years to figure out how to fix it unless one of the people working on it now happens to stumble into it for the help and funding they get. It’s why I’m so stubbornly working on this blog instead of getting all the rest I should be, though I do try to balance it as best as possible and I’m looking for others to join me here. But I’d be all alone if not for the friends I’ve made through my blog and the couple of groups I belong to. My family wouldn’t hear me, wouldn’t understand. I haven’t seen any of them in at least 4 years and my mother died in the meantime. It’s just too lonely and boring to behave myself all the time. The real writing I love and would give anything to be doing, well that just hasn’t been possible for me for years. I’m terrified to try again to be honest, but I think if the changes I’m seeing continue, I may try picking up that pen real soon. Thanks so much for your encouragement, Alicia. It means bunches! I hope you’re doing well and everything moving right along for you!

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  9. I’m in it because I think fiction is important. Think of Black Beauty, or Uncle Tom’s Cabin, or To Kill a Mockingbird, and realize how much of a change they made in the world – while being great stories (which I think is crucial).

    Fiction is MY contribution – I just wish I could get some of the people who aren’t sick to read it more, and the people who can’t read it themselves to recommend it to friends who can. It’s happening, but extremely slowly, and I have NO energy for the kind of frantic promotion it deserves. What I’ve tried so far has not been enough to truly launch it.

    If ANYONE would like an electronic Review Copy, and would at least consider writing a review, I would be delighted to supply one.

    I keep telling people to read the reviews – I think I wrote a good book.

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  10. I have every intention of reading it and perhaps now is the time to try. I was doing books on tape because I was having so many eye problems, but now I’m having problems concentrating on the recordings so I need to try going back to text… if it’s not one thing it’s another.I’ve also written several reviews, mostly of poetry, but at least one or two prose works. It’s been years though and I am rusty as heck. I am willing to try, though if you’re interested in having little old me do it for you and don’t mind it taking me a while.

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  11. All I need to send you an electronic review copy is your preferred email and format. I have epub, mobi, and pdf. Use the abehrhardt [at] gmail address, and I’ll send you one right back. At least with electronic formats, you can make the fonts as large as possible – warning you that it’s long and complex, and DEFINITELY not a category Romance.

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