So a completely unexpected thing happened the other day... I got another diagnosis to add to the intake form. New diagnoses aren't something I fear anymore. After all, no matter how scary the name, a diagnosis doesn't change my symptoms for the worse just by existing. Sometimes the new meds that come along with it can cause a hiccup in my life for a while, sure, but in the end knowing can only lead to potential help from my point of view. Knowledge is power and having a name for something means that there is likely research and papers out there that could potentially improve my life.
I'm pretty used to diagnoses taking years to get at this point. That's how it's always been for me, my first dysautonomia diagnosis took 6 years! That's actually pretty average for that group of disorders too in case you're thinking "that's CRAZY!" The other day though... hours, mere hours. The diagnosis: MCAD. It was exciting to speak with a doctor who actually understood what was going on in my body rather than just in the one area they look at... and she brought a hope for a brighter future that I haven't really had in a long while back into my life. Dr. G thinks that treating my MCAD can help everything from my migraines and pain (it may not be fibromyalgia after all!) to my dysautonomia and asthma. She didn't promise a cure for all of my ills but she did provide hope for lessened symptoms over time rather than the understanding that I've been living with: that I would get worse over time and there wasn't much I could do to stop it.
When I made an appointment with Dr. G I didn't expect anything, not really. I was hoping that this pulmonologist that I had found on Google- because she was open on Saturdays and I didn't want to take any more time off work in case I needed to go back to the neurologist- would at least treat the asthma that had been flaring up more than normal and maybe find a new allergy medication for me since the one I was one seemed to be barely helping at all. I resigned myself to likely needing to go back on oral steroids and just hoped that when she saw my intake form she wouldn't write me off as having a Somatoform disorder and send me on my way.
It's a real fear guys. Once you're labeled 'officially' as having it all in your head doctors stop listening. As soon as it touches your health record it's so hard to get things done for you, necessary things... like medications that keep your heart rate in check or a check to see if your electrolytes are out of balance when you head to the ER because you can barely stay awake. Thankfully I only have had doctors say it out loud to my face ("I don't believe in that disorder." Seriously Doc? I have, in my hands, more than a decade of medical records that you are dismissing because you 'don't believe' in a known, researched and many times published medical condition... yeah, patient advocate time.) but never bother writing it down. This is not the case for many patients that I know... they have to fight with hospitals and doctors to get a note added (but the old note remains) that the previous note was incorrect.
Side note: Those intake forms where have you check all the boxes of symptoms that you have experienced in the past 3 months are the bane of any Spoonie's existence. 'Normal' people might check that you've had several headaches, sinus issues, and one or two other things then check off a family history of diabetes and be done. We have to check nearly single every box... and hope that they take us seriously when they see all the side scribbles and notes on the margins trying to explain why there are so many and that we aren't hypochondriacs.
Hypotension- check- Monday afternoon 96/60
Hypertension- check- Tuesday afternoon 160/101
Heart palpitations- check- also on Tuesday
Tachycardia- check- Monday evening 135, standing
Bradycardia- check- Monday morning 54, sitting
Nausea- check- Monday evening, likely due to tachycardia
Digestion issues- check- IBS, cycles
Dizziness- check- related to dysautonomia
Vertigo- check- related to dysautonomia
Headache- check- migraines, tension headaches, sinus headaches; being treated by Dr. Y
Trouble breathing- check- this is why I'm here
Sinus trouble- check- also why I'm here
Joint pain- check- referral out from Dr. Y to a rheumatologist
check, check, check, check, CHECK!
"When everyone is super, no one is"... the same goes for symptoms. If they're all checked then doctor's have no idea what is actually important, they don't know where to even start. Don't even get me started on the 'Medications & Supplements' area... two lines, really? Diagnoses and surgeries... I need my cheat sheet for all those dates. But I can spell everything for you when your nurse asks me about it all to put into the computer in 15 minutes. It takes forever and is pointless because you just have to go over it all in context when they come in for your little bitty time window appointment. *end rant*
Anyways, Dr. G didn't do any of that... exactly the opposite actually! I gave my information to her interns (who had growing eyes and lots of questions for each thing on my list... they must have been new) and as they were filling her in on everything I had told them she made a few hypotheses. The first was that, despite being on anti-histamine drugs for years and having taken a dose less than 24 hours before, I would test positive on a histamine test. The nurse tested me and, of course, a nearly instantaneous positive result came from the test. I didn't realize it at the time but that's not supposed to happen for normal allergy sufferers apparently. In her consult she made sure to let me know why she wanted the test and what it meant. This was my first inclination that I had stumbled upon someone who could, and would, help... she didn't guess and medicate, she made hypotheses and tested them before doing anything further.
Next up was a Pulmonary Function Test and a diagnostic form to verify that my asthma wasn't under control. Again, unsurprisingly... it wasn't.
The first consult happened next. She brought the hypothesis forward that I had MCAD and gave her reasoning and plans to verify this hypothesis. Based on my history (I was very general on the forms that I filled out because I figured it would be more likely that those in the office had heard of the general category of disorders rather than the specific subsets. I should have just put the specifics down to begin with but I'm a bit jaded I suppose...) and the few tests she had run already she managed to identify nearly all of my specific diagnoses as well as some that are still in unverified status but highly likely. We were able to discuss my symptoms from ALL of my diagnoses and how they interrelated and how MCAD could be affecting my body and it's disorders. A real conversation... if you don't have a chronic illness you don't understand the relief and joy that comes from meeting someone who you can speak with about what you go through without having to 'dumb down' or explain everything. Not to mention the anxiety and fear that you'll somehow scare them away from you- doctor or friend alike on this one. I was nearly giddy by the time she left the first time! I had to call my mom and let her know that the quick appointment I had anticipated was going to be quite a bit longer and so much more fruitful. Apparently I had stumbled upon the doctor that I would have eventually ended up at once I got back to a dysautonomia specialist again... she works with people like me all the time! There are really no words to explain what I was feeling at this point... relieved, excited, giddy, happy, optimistic... none quite fit yet they all do. I know what I wasn't though- scared or anxious.
She wanted to do an allergen test next. That cost a pretty penny but I haven't had one since I was a child and that was prior to having years of allergy shots as well as moving around the world so it was, needless to say, rather outdated. It was... less than fun. This will sound like a complaint but it's just a run down of the next hour or so. We started with the test on my back. The little needles stung and I itched for pretty much the entire next few hours but if it helped make me better I was all for a little pain. Like my massages, they hurt at the time but they help so I say go for it. Lying on my front also caused my ribs to have significant pain so lying still wasn't 100% possible but we found a way to make it work. I was pretty glad when that was over to be honest and hopped right off the table to get dressed. Hopping directly off the table wasn't my best choice but I was excited for answers and completely forgot about managing my POTS so ended up grabbing a wall as the room spun around me for a bit at that point. A rest lying down was necessary but and I was able to move forward by my next consult time. I still make silly mistakes that cost me time and energy all these years later. It's rather annoying but its part of being human. :P
The final consult consisted of figuring out a plan of action- together. She placed an order for some lab tests (which she's going to personally call and discuss the results with me... who does this anymore!?!) as part of the next step in finalizing the diagnosis. Then we discussed whether I wanted to go straight to medicinal treatment or try some more natural approaches to desensitizing my mast cells first. I'm all about natural methods and staying away from the more dangerous or long lasting medication when I can so I'm super psyched that she is as well. There can be so many interactions when you're being prescribed many different meds but many different doctors... its hard to tell sometimes what caused what and if a treatment plan is actually working. For this reason, we ended up deciding on a mixture of natural and medicinal for the next few months. I'm on allergy and asthma medications, which are necessary for me at the moment, plus I started an elimination diet to start the process of lowering my histamines and finding out what causes issues for me. I'm not going to lie, it sucks. She gave me a bare bones list of items to avoid and told me to try to stick to a low histamine type diet as best as possible until I came back in. I threshed it out a bit more because I'm me and needed to understand the why and do's/don't's better. What I ended up with was a low histamine diet mixed with AIP basically. I do best symptom-wise on Paleo and when you add in a histamine intolerant diet to that mix it gets pretty restricted in the flavor area... at least it seems that way for a big fan of cooking like me. In 6 weeks I go back to discuss how the diet and meds have helped and we will look at beginning at the next step of my treatment plan. Hopefully that will include adding in some of the foods I've cut out as I already miss cheese and salsa something major.
I came to terms with my health years ago. A lot of the time it's felt like a fight to stay where I am rather than a fight to get better, at least in recent years. The IBS issues and tachycardia would improve with trying this new thing or that but then the pain would get worse. A new medication would cut my migraines in half but made my heart rate unstable so I couldn't exercise. I've gained weight, pain and exhaustion the past few years despite gaining some ground on the nausea, tachycardia and IBS issues. Don't get me wrong, I'm in a much better place overall than I have been in the past medically speaking. I have a fairly normal life (and I can remember a time when that seemed to be going away) with friends, work, & hobbies. I'm very blessed and I know it... but I stopped praying for someone to find a cure. I started instead praying that I wouldn't get worse like so many of my friends have. Eventually I stopped asking at all about my health. That doesn't mean that I stopped treatment and just stayed home depressed and miserable, I didn't. I kept fighting and I always will. I just found some good in the bad that I have experienced... I found peace in being who I am and stopped dreading the future so that I could fully live in the present.
Now? I'm still sticking with that outlook of peace and trying to live each day that God has given me to the best of my ability... but there's hope, and prayer, for a brighter future than the one I had resigned myself to.