Cleveland Clinic

If you ever have health issues and one or more doctor tells you it's either in your head or that they don't know what's going on or they say there are possibilities too rare to look into GET TO CLEVELAND. Obviously don't take the time and money for a hang nail, but seriously. If you have anything that's been ongoing and you're not responding to treatment, these people are brilliant, kind, serious and thorough to the extreme.

When we got the call giving us directions the nurse said there was no way we could miss the clinic and she was right. It's a huge group of buildings right past the university with a gorgeous fountain in front. They have people in red jackets directing patients to whatever area they need to go. It's intense. We went into the right entrance and crossed a little bridge to another building. Every single floor of our building was neurology. Pediatric, epilepsy, psychological, etc. We went to the ninth floor that's for neuro-muscular issues. First a nurse did a precheck, then a PA-C came in and got the general picture. Both were really kind and the PA-C was from Colorado as well. Then the doctor herself came in and got the more detailed description of everything that happened. Dr. Browning wasn't like any doctor I'd had so far. She's very quiet and soft-spoken, not brusque or touchy feel-y at all. When she talks, you listen. She listened to everything, charting out the order of events and only interrupting to ask a clarifying question. She looked over all the records and test results I brought her, writing down the numbers to run against her own systems. She put the whole picture together in the two hours I was with her. She said without a doubt yes it's Dysautonomia and POTS. Apparently there are several types of Dysautonomia, so she ran a LOT of bloodwork (12 tubes. I had to take a lunch break to get my blood pumping enough for them to finish the draw. Oy.) and I'm doing a test on Thursday so that she'll have a better picture on how to treat. For the test they're doing on Thursday, they put a tan-ish, pink-ish powder on my skin and have internal and external temperature monitors on me. Then I go into a sauna. They'll check to see if my temperatures have any consistency and also they'll be checking sweat production. My last sweat test was literally a flatline. This one will see if anywhere on my body is sweating and if so which areas. I guess this helps them see which type of Dysautonomia I have. Good thing I don't have modesty issues after being a dancer. This is going to be weird enough.

Of course, since it's me, there are a couple other pieces to the puzzle that haven't been completely ruled out or looked into. There's a chance I have copper deficiency. I've never even heard of this. I guess it's pretty rare; it sometimes happens to people with gastric bypass. It's linked to Celiac, and can cause any and all of my "neuro" symptoms. I don't understand why no one looked at it since they checked every other form of malabsorption and malnutrition.

When I was diagnosed with Gastroparesis, I was seriously sick. We had to completely retrain my stomach on how to work, starting with a liquid diet for a month. I had half of a Boost (protein shake, the lowest in fat and fiber that we could find) six times a day. After a month we added a half a cup of rice or scrambled eggs a day with green tea. At first, trying to find a way to make Celiac and Gastro work was really hard, and getting used to actually measuring out half cups (I'd never paid attention to sizes before) took some getting used to, since that was the biggest serving size I was allowed. We got a juicer when I started improving and that's how I've been getting vegetables in. I still don't eat red meat, raw vegetables or anything high in fat or fiber. You'd think someone would look into every kind of absorption since even now I'm obviously not getting all the vitamins and minerals I should be getting through diet. You'd think.

Another option is a rare auto immune disease that my doctor wouldn't name. She's looking for that antibody with the bloodwork she ran. If she finds it she'll be treating with Plasma Pharesis. This is pretty similar to Dialysis, in that your blood is pumped through a machine and put back into your body. What the difference with this is that the machine filters out the plasma in the blood, removing the antibodies the body produces. The antibodies are what attack different cell systems with auto immune diseases. Sometimes this treatment is pared with immune suppressants to try to calm down the immune system and put it into a remission of sorts.

Something else that no one followed up on was towards the beginning of all of this. I saw an Endocrinologist who thought I might have Addison's disease (an autoimmune disease that attacks the adrenal glands), so she ran an ACTH stimulation test. For this test they draw your blood at the beginning for a baseline, and then they give you an injection of Cortisol (what the adrenal glands produce). After thirty minutes they do another blood draw and again after sixty minutes have passed. Initially, your numbers are supposed to start low, and they're supposed to go up by 18-20 micrograms per deciliter. My number started at 31, after thirty minutes went up to 35 and after sixty minutes went back down to 30. It ruled out Addison's but was a seriously abnormal result. We'd shown this test to every doctor since then and no one had seemed concerned or wanted to follow up. I kept all of my medical records and had them separated by doctor/hospital and in chronological order for Dr. Browning. She was going through all of them when she saw this test and she wasn't happy when she saw it. She said it either wasn't done correctly, or if it was, it needed to be looked into. She said it could be a huge contributing factor to everything I have going on. So when I make it back to Denver, that's in the works; go back to Barbara Davis and see the Endocrinologist I trust.

In regards to my POTS she's setting me up with the cardiac unit. They're going to do a full out evaluation including an exercise segment to figure out exactly what's going on with my heart. After the eval, they're going to give me a personalized rehabilitation program that I can take home to my physical therapist. This is honestly what I'm most excited about. I miss being active more than anything. I miss dancing and hiking and running and Pilates. I've been seeing a physical therapist who I really like and respect and I think he's been as frustrated as me with this whole process. Until he had a clear diagnosis he didn't really have a goal to work towards with me, and he really didn't like seeing me get worse instead of better. It'll be so nice to have a plan instead of guesswork. The only problem is that because the Cleveland Clinic's cardiac unit is so highly respected I'll have to come back in a month for this eval. It's the soonest I could get in, and that was with the awesome receptionist pulling favors for me.

I'm feeling so much better about everything. Yes, there are still details we have to hash out but on the whole I'm finally moving in the right direction.

I know this is a lot so if anyone has questions go ahead and leave comments and I'll get back to you.