The Specialist Parade

Since the beginning of September I’ve seen the dentist, the allergist, the pelvic floor surgeon, internal med, cardiologist, rheumatologist, trigger point therapist and GI specialist. No wonder I didn’t write much, I wanted to catch you all up. Here’s a super fast overview:

Cardiologist is concerned about my BP, as is everyone else. Baseline is 160/110, and I hit a record high last week at 177/144 during an anaphylaxis episode. We tried a couple of different meds, they all made me worse. An internist noted my BP while getting my iron infusions, sent me for a test ‘It’s so rare, I’m sure it isn’t that, but just in case…’. Of course I have it. Hypoaldosterism. My adrenals are off. More tests are required, at minimum my renin /aldosterone ratio is off (my renin is very low… ). If those chemicals go out of whack, it affects your fluid balance, and subsequently affects my BP. Treatment starts with increased fluids, sea salt and potassium. Oh, look- I already do that! I get about 1-2 litres of IV saline per day, and a potassium infusion twice a month. A couple of times a week i take a handful of himalayan and dead sea salt (little tip- use large crystals and swallow them like pills, drinking saltwater is horrible). I love that I need to take more salt to control my BP. Apparently my read of what works for me is on the button. I’m thinking that from now on I will start with doing the exact opposite of universal medical advice. Also started clonidine again (I took it before for a different purpose, didn’t know why I liked it so much, turns out it stimulates the vagus nerve! It has a systemic calming effect, and reduces BP in the short term. I feel SO much better-only 3 days in. My baseline BP has been 160/110 for the last year, yesterday my BP was 140/95- not great, but even that shift makes me feel miles better. The higher my BP, the higher and louder the tinnitus (ringing in the ears). I thought I might be losing hearing acuity, and frankly really didn’t want to even think about losing my hearing. My tinnitus changes tone when my BP changes, but I didn’t realize that it can affect the volume as well. I didn’t have to have the cc on last night. Cool!

Dentist– cavities fixed. Didn’t realize how painful they were until the pain stopped. I’m going to need a root canal on one, but it isn’t hurting very much, so we decided to wait until we don’t have a choice. It’s very likely that the remaining tooth will disintegrate the moment he touches it, it definitely makes sense to put it off as long as possible. My whole head is happier, my teeth have even moved, a gap has gotten smaller, and they have a more symmetrical appearance. My dentist started to ask more about it, then said ” you know, do I even want to know…I’m just gonna go with it.” 😁 He’s been my dentist for 20 years, he knows the deal! I was worried about my neck and jaw, I’m relieved that it wasn’t too awful.

GI. Saw him to rule out internal bleeding, because I’m burning through iron very fast. He said a colonoscopy was counter indicated for people with EDS, to only get one if absolutely required. There isn’t much to be ‘done’ with the looping bowel until it fully twists. Apparently my omentum looks like swiss cheese, and having lost a lot of weight adds to the problem. He used the analogy that getting my bowels in the right place is a bit like stretching out a hose and then trying to get it back into it’s packaging…Makes sense. My bowels have also gotten very sluggish lately. I seem to have an intermittent blockage, I’m skirting the edge about having to do something surgically, we will put it off as long as is humanly possible. He wasn’t great, but he was fine. He’s very much a surgeon- if it doesn’t require a knife, it isn’t his problem.

Pelvic Floor Surgeon. Check it out- an advantage of EDS! With connective tissue problems, we are way more prone to prolapses, hernias, and the like. In the general population, they don’t heal. You can get improvement functionally with physio, etc, but it’s like a balloon- once you’ve stretched it, it doesn’t go back. Mine have healed! Apparently some people with EDS do that. She said I have very mobile tissues in my pelvic floor, but they spring back quite well. I’ve  noticed that I have less loose skin than one would expect in a middle aged woman who lost well over 100lbs
, so that makes sense.

Allergist. Mixed. I have GREAT news to start. I am back on Xolair. Xolair is an IgE blocker, it clogs up the IgE receptors on mast cells. I had an anaphylactic reaction to it in May of 2015. Since then, getting back on it has been my number one health goal. (Two and a half years. Crazy.). When I was on it I had ana a couple of times a month. Six weeks off of it, I was at four per day. (It was compounded by a very smoky summer). It’s only taken once every two weeks- frankly, risking anaphylaxis every two weeks to not have it every day makes sense to me, but not to allergists. Anyhow, I’m on it. I’ve had two doses, and no reaction at all. It takes a couple of months to start really working, I hope it will be as successful this time. On the not so great side, I need to deal with the fact that the allergist still doesn’t think I have MCAS. She says that I ‘don’t fit the profile of MCAS.’ I’m not really sure why, and challenging her while I was getting my first xolair shot wasnt the best plan, so I didn’t push. It’s SO frustrating. FFS, if I don’t fit the profile of MCAS, it doesn’t exist. I’m the damned poster child! She talked to my rheumatologist and my GP, and the mental health crap has returned- (logically, if I don’t have MCAS, the only other option is that I’m faking it or it’s all in my head… sigh. I am SO sick of re-fighting battles). Now that I’m back on xolair, I don’t need an allergist. I really hope that if I just stay away from the allergists I will get everybody else back on track. Stay tuned…

Rheumatologist. I wanted to ask her about IgG, which is one of her research focuses. Apparently that’s under the allergist’s purview (my allergist clearly got to the Rheumatologist- she even used the identical turn of phrase that the allergist did). I was also hoping for information on my bizarre pain registration, but she didn’t have any additional info. She did, however, pick up something else from the tests that the internist ran. I am HLAB27 positive. About 10% of people with that gene develop ankylosing spondylitis, a degenerative arthritis of the spine. She was pretty funny- “Of course, if anyone has it, you would be the one.” (I still think she’s fabulous, she got bad info from the allergist. She’ll get set straight quickly enough. She ‘gets’ it. I hold out hope for my allergist, too, the leader of the old boys network may be retiring in January…).  When she asked if I had back problems, we both laughed! Unfortunately the fact that I’ve been seeing a chiropractor since I was 14, and it started with sciatic pain is not a great sign. I’ll need an MRI to know one way or the other. It’s not urgent, so it will probably be a few months. In the short term, there isn’t a lot more to be ‘done’ about it, I’ve been doing the right thing for 30 years. (How many doctors have told me that chiropractic doesn’t work? It does for me. Told ya so.). If I do have it, the surgical treatment for it is different than other degenerative spine diseases, but I don’t know a lot more.

At the moment it feels like managing MCAS is a full time job. MCAS highlights one of the biggest issues in our medical system, silo medicine. I don’t know what would be better, but this doesn’t work very well. Specialists are very insular; they don’t read journals from another field, and they don’t want to hear about other systems, so they really don’t get a complete picture. There are mast cells in every tissue in the body- chopping me into systems is a very poor plan. I’m incredibly fortunate to understand what the specialists say, and am able to analyze their suggestions, predict what is more likely to happen, and am able to listen to what my body is telling me. Even so, managing my care is very difficult. I relay info back and forth (we all know that you can say a lot more than you can write in a report), and it’s a challenge to know what info is the most important. My word is NEVER taken over a specialist, though. The number of times I have had to re-convince my GP that you don’t need elevated tryptase to have MCAS (yes, I know that five allergists have said that. They’re wrong, they’re confirming each other’s misinformation.). It bewilders me when doctors won’t listen to me, or dismiss what I say. Of course I know more about MCAS than most doctors. Duh… I’ve been living it my entire life. And even though my brain is a lot slower than it used to be, I have learned a lot about MCAS in the last four years. They don’t have that kind of time to dedicate to one patient. I do really need these specialists, though. We need to connect the dots between what I know about myself and about MCAS with their patient experiences, and their knowledge of normal and pathological physiology. I need both halves to make this work. At least things are moving, even if it is at a glacial pace. And the news from all quarters is optimistic. We’ve ruled out the scary cardiac and GI stuff, I’m more functional than I’ve been in two and a half years, I’m back on Xolair, I’m close to getting all the care I need. I’m definitely going the right direction, as long as I can keep doing that, it’s all good!

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