mold – What Happened to Your Legs?

I’m struggling, on all fronts. The world is such a terrifying place, right now especially. I just can’t think about it. We all try to carry on, don’t we? I mean, some of us do something, like organize aid to Ukraine, but most of us are just trying to make it through our own days.

I waited through February and most of March (making phone calls and sending messages) for UCLA to properly refer me to UCD sports medicine. The referral showed up as a pdf in my UCD account. But UCD itself never got it. I sent UCLA UCD’s official referral website and referral phone number. UCLA asked me for UCD’s fax number. Isn’t that your job? Like, what you actually do every day? Can’t you get their fax number yourself?

Finally at the end of March, I got myself an appointment with a UCD primary care provider (in June), just so I could sign up for a UCD account and link it with the UCLA one. Sports medicine still didn’t have access to the referral. So I printed it out and took it to the UCD medical group offices in my town and handed it over at my new (future) primary care office and asked them to please get it to the right people.

Once I had done that, I was able to get an appointment with my new sports medicine doctor for Thursday, April 14th. I can’t say I feel really great about it. He read through Dr. Solberg’s (UCLA CP Clinic) notes and agreed with them, except for the pinched nerve idea.

He was very skeptical at my having had my first hip injection from the orthopedic surgeon himself (after the scheduling mix up). “It’s not a difficult procedure, but it’s not a surgeon’s skill set, so he might not have gotten it in the right place,” he said. Best to do it again, as it should be both therapeutic and diagnostic (help with pain and with next steps). It’s something that’s commonly tried twice before moving on, and it’s exactly what Solberg said as well.

He watched me walk about ten steps, did some assessment where he tried to recreate my pain, and reluctantly scanned through my new handy-dandy history of CP and chronic pain that I’d typed up. Seemed to only care about the labral tear and not about the impingement, much like Dr. Solberg. I mean, they are doctors, so I recognize that they know lots that I don’t.

But what really rubbed me the wrong way was that this doctor shared that he happened to have hip labrum that were “a mess” and impingement on both sides and not have any pain. How nice for you. I understand that these conditions don’t always cause pain. I also know that they often do cause pain. Let’s add forty-one years of cerebral palsy to your body and see how you’re doing then.

My injection was scheduled for the following Tuesday, the 19th, and I was a little surprised at how fast things were moving. This procedure would be done at the hospital facilities in the big city, rather than at the medical offices in my town. I had two injections, one in the hip joint and one at the low back that was for my SI joint. I got to undress from the waist down and put exam shorts on. Which were definitely not sterile by the time I got them over my shoes. I really would have preferred to hike my skirt up/down.

They were giant, and what’s more, the entire right leg was promptly cut up the middle to expose the hip joint.

I asked him if he’d done this on patients with CP before. “Not many,” he said, which I took as the politician’s response meaning, “not any.” I told him that my leg would probably spasm, which it did. Then I turned over and we did the second one.

After that, he referred me to physical therapy. Ha! I knew that was coming. The rationale is that sometimes PT isn’t effective until the pain is under control, which makes sense. Except that I didn’t think the pain was going to be under control after this. And he did say, as we were setting up, that these injections would not solve all of my pain. Yeah, I’m not going in thinking that, believe me, but your disclaimer is duly noted.

The PT referral was handed to me after my appointment. My clinical indications are as follows: CP, right labral tear, facet arthropathy (lumbar), sacroiliac pain, and gluteal tendinitis of the right buttock. I made an appointment for May 12th with what will be my fifth physical therapist (third office) since 2019, not counting the two hand therapists.

No mention of the impingement (FAI) on the PT referral. When I asked about this, he responded that that’s the shape of your bones, which then leads to the tear. So it’s like, yeah, one thing caused the other, but we’re only acknowledging the tear.

Did the injections–the lidocaine at least–provide any relief? No. No they did not. Not even a little bit. So the three-month follow-up was moved up to May 3, two weeks after the injections, for reassessment. (I guess I’ll keep the PT appointment anyway.)

I don’t know what I was expecting. I had mentioned in my message that perhaps we could address the bursitis? So I thought maybe he’d want to inject the trochanteric bursa. No. It turns out, according to some quick googling, that gluteal tendinitis (an inflamed tendon) is the new version of trochanteric bursitis, and that now we should look at possible pinched nerves (the thing he doubted a few weeks ago).

What he’s recommending as our next course of action is a nerve conduction study/EMG. First I get to experience little shocks, and then I get to have little needles/wires put in various muscles and they’ll capture a bunch of wavy lines which they’ll interpret to see how well my nerves and muscles are working. It will be a painful, and not quick process, and I am not looking forward to it. Might do it on the left side too, since it probably needs doing. The doctor feels that since the injections didn’t work, we now know for sure that the labral tear is not the source of my hip pain. Nerve pain can “masquerade” as a lot of different pain, and with my “constellation of symptoms,” that’s where he thinks we should look next. I like “constellation of symptoms.” The body is not simple; there’s lots at play.

So look we shall. The appointment has not been made yet, and I’m trying not to get too anxious in the meantime because I know that doesn’t help. I have to do it. It will be unpleasant. That is that.

Now, the rest of me. My throat still hurts every second of every day; I am hoarse; my chest hurts; my forearms burn, etc., etc.

We did make some progress with the mold issue. First, we won’t be replacing our skylight, which is apparently in good shape, but we did get the underlayment cleaned out of any decomposing plant matter, and the metal framing painted to cut down on any rusting. The issue has been the condensation on the inside (which is enough that it drips and gets absorbed by the drywall.) It’s not as much of an issue now that it’s warmer, and we know now to monitor it.

In late February, we had a remediation company come do a mold inspection. They used the prior testing results to remove baseboards, moved the fridge, looked under the sink. Cut a “small” hole in the ceiling next to the beam and flaking plaster. Unfortunately, because the testing results showed possible mold areas throughout the living/kitchen area and the bedroom, it’s basically everywhere (except the bathroom, ironic).

They said with the mold patterns they saw, there was probably a kitchen flood at some point in the past. But there’s also high levels at one spot in the living room and on an outside wall of the bedroom (right where the neighbor’s drain pipe comes down…). The drywall they cut from the ceiling was covered in mold on the underside. That could potentially mean that that whole ceiling (roof) had issues. As a reminder, we have never seen active leaks or water damage. This could all be old mold that was never properly cleared out. Dead mold is still potentially hazardous; that’s why it needs to be removed, not killed.

What we are looking at is having to move completely out of (pack everything) our house for the remediation, and then have it put back together, without knowing exactly how much will need to be done. (They can’t know the extent/source of the mold until they open up walls.) The estimate for the whole thing is tens of thousands of dollars. Coordinating the remediation company and a contractor is stressful, and feels nearly impossible. Everyone’s booked; everything’s a question mark. We don’t know how long we’d be out of our home. And it’s just too big of a financial commitment to make when we can’t know for sure that I will start to feel better once the mold has been removed (and we’ve cleaned every single item we own). It can take six months to a year to recover from prolonged mold exposure, and if I don’t, what then?

So we haven’t started the remediation process yet, and I’m no closer to (possibly) feeling better. At my most recent doctor’s appointment I asked to be referred to an allergist. There’s no single test that can be done that would show that I’m full of mycotoxins (the urine test I did that started this whole thing is controversial). But when I originally saw my doctor for ongoing sore throat (2019), she said that we’d start with ENT and then allergist. It’s past time I followed through with that. I’m hoping that the allergist will know something that can help reassure us that going through with the mold remediation will be worth it.

My doctor also asked if there are any tests I’d like her to order (now that I’m over 40, I can have my cholesterol checked, get a mammogram, there’s a new hepatitis test, etc. ) I said I’d like to have the celiac panel done again. Just to recap, I had my first one in summer 2018. My tTG was >250, and that doctor said that I had celiac disease and should stop eating gluten, so I did. (Normal results are less than 15.) Then in October 2020, I had the upper endoscopy and the GI doctor ordered another celiac test at our follow-up in January 2021. My tTG was 156. GI doctor told me that I needed to be careful of hidden sources of gluten like medications and makeup. Of course he doesn’t know that I don’t wear makeup and that I check my lotions and sunscreens and read my labels. I thought that that number was pretty good, since my first test was off the charts, and I knew it could take years to come down, so we did nothing further. Now it’s been over a year since then, and I was curious to see how much more it had come down, if I was in the healthy range yet.

My tTG is now 221.5. It’s nearly back up to being off the charts. I was not expecting that at all. What did my primary care doctor say? “Be careful of hidden sources of gluten like sauces and dressings.” When your patient has had a celiac diagnosis for four years and the numbers have gone from >250 to 156 to 221, don’t warn her about salad dressing. Something is wrong.

When someone has one autoimmune disease, it’s more likely they’ll have another. A tTG that stays elevated on a gluten free diet is a sign of another autoimmune disease. A lot of my symptoms (though not the sore throat, as far as I can tell) are in line with autoimmune diseases. And lots of other things. Because symptom lists are all like: fatigue, muscle and joint pain, etc. I’m like a medical student with a textbook; I’ve got all the diseases. And the thing is, almost no one has all the symptoms. I am hoping that a rheumatologist will be my next stop, but my doctor didn’t want to refer me based on my tTG, because I already have the allergist appointment.

I need someone to help me. I need someone to care enough to dig. All of the thousands or millions of us out here with chronic pain and a constellation of symptoms, we want Dr. House and his team to search and search until they find the answer(s). But House is fictional. I have told so many doctors about so many of my symptoms (I’ve not shared all of them on the internet), and I need someone to put them together and make meaning. Maybe most of it really is mold exposure. Studies around mycotoxins and their effects are still lacking, so that’s all in the realm of functional medicine, which I’ve pursued a little. But now I have this other piece of the puzzle, this tTG data–real numbers. Is there a connection between environmental toxins and autoimmune diseases? There could be. The frustrating thing is that the internet can tell you whatever you want to hear, if you look for it. So I need experts to look. I’m tired.

Here’s a real medical doctor, Dr. Tamara Tuuminen, who was really exposed to mycotoxins from mold, talking about the research she’s been doing (30 minute presentation). I’m sure there are plenty of other real medical doctors who would roll their eyes.

Episode 50- Dampness and Mold Hypersensitivity Syndrome (DMHS) Explained Dr. Tamara Tuuminen

I hope I can someday look back on this time as those few years where I really wasn’t doing well, and feel glad I’m doing much better. I want so much for this to be temporary. I keep saying to myself, “This is where I am right now.” The whole “this too shall pass” mindset. But will it?

I’d love to be able to write that since October, there’s been much progress and improvement on fronts cerebral palsy– and mold-related. But I am not able to write such things.

With the mold, we had been waiting, waiting for results and estimates. We got the mold culture back later in October. The culture was taken from the original dust sample, and then it took a while to see what was still active and growing in that sample. Out of all the scary oranges and reds on our ERMI (see previous post), there were only five active molds in the culture. And the alarming “black mold” was not one of them. So we don’t have any active black mold, but there’s still lots of old black mold spores that need to be cleaned out of our house. At least, that’s what I gathered from the whole thing.

After the culture, we then had “Pathways” testing done. Rather than have someone come and start pulling up baseboards and just look for the mold, we had the whole interior perimeter of our house sampled (and around windows) to see where the mold might be coming from in a nondestructive way. We found, unsurprisingly, that there’s a strong indication for mold under our sink/dishwasher, and around our skylight, as well as a couple other odd places. (Even though we’ve not seen water damage it doesn’t mean it isn’t there.) But since then in early December, we’ve made no progress. We are still waiting for the remediation company to give us an estimate based on the Pathways results. Should be any day now.

We have been advised that our original 1980s skylight will need to be replaced once remediation is complete. Did you know that no one makes ten-foot skylights anymore? No? Neither did we. We have one long, narrow skylight above our front door. Lots of light. Lots of trouble. We are going to have to put in two or three smaller ones, in place of the big one. That just means more potential for leaking skylights in the future, though. Skylights are notorious for leading to water damage. One smaller one, and close up the extra space? We could close it up altogether, but we do like the light. I do not enjoy this part of adulting/home ownership.

I do very much want to get the mold dealt with so that I can see if I will indeed start feeling less sick. I’m so tired all the time. Exhausted by the throat pain, like I have strep throat every day of my life, tired of my forearms and my hands hurting. These aren’t CP things, so I need them to be mold things. I want CIRS to be what’s happening, because that means I have a chance of someday feeling better than this.

On the cerebral palsy front, I had been waiting on a referral to UC Davis to see a pediatric orthopedic surgeon who is familiar with both (younger) patients with cerebral palsy, and open surgery techniques in case that is what my hip was going to need. Eventually, I received a letter from UC Davis turning down my referral. I’ve never been given a flat-out no like that. They said they just don’t have the time/doctors. I let my doctor know, and they said they’d keep looking for other options for me. But, I didn’t hear anything.

I recalled that from my own research, there are two places I know of in the United States that specifically state that they work with adults with CP: the Weinberg Cerebral Palsy Center in New York and the Center for Cerebral Palsy at UCLA. They hold two clinics weekly and one of them is a “lifespan clinic,” meaning that they see adults.

It sounded very fancy and hard to get into. I filled out the online form and was never contacted. So I had my doctor send a referral and was never contacted. Then I called the number and it was the general UCLA Health number (“If this is a medical emergency, hang up and dial 9-1-1. If you are calling about COVID testing…”). Eventually, I stumbled upon the right number to make an appointment. I thought it might be months away, especially given that the clinic is only held weekly. But I got an appointment for February 16th. Hooray! The man on the phone gave me the address and parking information and asked if I had any questions. I asked how long the appointment would be.

“They’re usually about fifteen minutes.”

“Fifteen minutes?” I repeated, shocked. This world-renowned cerebral palsy clinic, where you’re fully evaluated and referred to any number of specialists goes by the same maddenly inadequate fifteen-minute increments as a regular doctor’s appointment? “This is for the adult cerebral palsy clinic?” I clarified.

I was assured that yes, it was, and that was that.

So, we are now making a six- (seven, eight, who knows) hour drive to Santa Monica and staying overnight for a morning doctor’s appointment that might only last fifteen minutes. What, then, am I hoping is the outcome? I am hoping, at the very least, that this doctor will be able to refer me to someone who is experienced in doing labral tear and FAI repair on someone with cerebral palsy. Maybe somewhere closer to us than LA, like UCSF. I’d also like someone to care and understand and listen and not just suggest a new pain medication, but that is asking too much in this culture.

So, I am still struggling, in all areas of my life, as I know so many of us are. I am still making some efforts to stretch and exercise. Occasionally, I even put on my ExoSyms. I had been trying, through November and December, to put them on and practice more regularly like I had been before the labral tear. But when I do, then it hurts more for days afterward. I think I am just not in a place mentally or physically to use them right now. I want to return to them someday soon, but just now, I’m putting what little energy I have into, you know, basic functioning.

I am reading The Book of Joy and using its accompanying gratitude journal. I am trying to meditate regularly, but not succeeding. I’m also looking into calming the vagus nerve, and I think it’s amazing and weird that a nerve can affect so much of the body and mind.

Caring for mental health is always important, and it’s even more vital when physical health feels so precarious. Do what you can to take care of yourselves, everyone. I’ll be here, trying to do the same.

Tag: mold

Constellation of Symptoms

Happy New Year?