Mods: Multiple people have asked me for an update, so I hope this is okay.
Very long post, feel free to ignore.
Background here- https://lemmy.world/post/12194311
Anyway, I went to my evaluation appointment this morning after making an 8 1/2 hour drive to Rochester, MN yesterday. (And boy did my butt hurt!) I gave as detailed an account of everything I could think of to the nurse on top of all of the information they already had. She went to consult with the doctor, who came in 10-15 minutes later.
After asking me some questions, he decided to examine my tongue. He took a Q-tip and started touching it. The further back he went, the more I gagged, but only on the left side.
That actually makes a lot of sense because I also have trigeminal neuralgia on the left side of my face. I was diagnosed with it 9 or 10 years ago and it's mostly controlled with a combination of medication and cannabis.
The trigeminal nerve is not on the tongue, but it's on the same side and apparently that sort of hypersensitivity is something that might happen- but the doctor did say my case was extremely unusual.
So, we did a test. He sent an order down to the pharmacy for a special compound liquid mouthwash- a combination of lidocaine, Benadryl and Maalox. Sadly not covered by my insurance, but my fairly well-off mother is with me and covered the $127 price tag. He told me to swish it around, spit it out, wait five minutes and then eat something I like a lot and have wanted to eat for a while.
The selection in the cafeteria was pretty limited, but they did have egg salad sandwiches, which I do really like. So I swished it around- had to do it for a full minute and the taste is foul- waited five minutes and-
Apologies for the ridiculous beard, it's been hard to give a shit about my appearance for a while.
So, it was only one bite and I stopped there, but it was the first time I have been able to chew and swallow solid food in just over seven months. I couldn't taste anything, but I do know it had horseradish in it because I could feel the type of spiciness horseradish has.
He made an appointment for me to go to the neurology department and we are here until April 3rd, but he couldn't guarantee that the specialist would be able to see me within that time frame, so the sucky thing is that I might have to come back. The sticking point right now is that the neurology department wants me to do an EMG, which is scheduled on Thursday, and it's just not necessary and probably will be quite painful, so the gastro department is working on trying to get me past that.
In the mean time, I'm to do the mouthwash as directed and then try to eat soft foods, but foods I enjoy. I guess the enjoyment part is just supposed to be psychological because I can't really taste anything once I use the mouthwash. Thankfully, the numbness is gone within about half an hour. He likened it to physical therapy, that it might be possible to get my nerves to heal this way. No guarantees, because he was a gastroenterologist, by profession, but he did do a dissertation on taste hypersensitivity, which is apparently what I have.
After it was over, we went to Walmart and I got a tub of deviled egg potato salad, which is definitely food I enjoy. So that will be what I will be seeing if I can eat this evening.
So... I am exhausted from the day and it's only 4:30, but I feel like a massive weight has been lifted now that I at least have an answer to what is wrong with me even if I don't know the best form of treatment yet.
Here is the other big relief. I am a heavy cannabis user (vaporizing) because it acts as a really good pain modifier and, even though the symptoms didn't really fit for cannabis hypermesis syndrome, they were close enough that I was very concerned that it might be the issue because honestly, the pain is pretty hard to bear without it.
Now the only question is what the hell I am going to do with myself tomorrow.
There is fuck all to do in Rochester and I really don't want to take another drive up to Minneapolis just for something to do. The one thing here that sounded interesting was the county historical society, which is in a 38-room mansion. It's closed until April 3rd. D'oh!
As I said, 82-year-old mother is with me so I can have someone else take notes and ask questions. She's good at that part because she used to be a psychotherapist, but I can't imagine what her therapy was like because seriously, she's nuts.
Already since we started yesterday, she had a massive panic when we were loading the car and got mad at me for holding her birthday present because "I can't deal with that right now." Then we were on the road and she insisted Waze was accurate even when it clearly wasn't. I had to work very hard to convince her that we were going from Indiana to Minnesota, so it didn't make any sense that we should take the interstate going to Detroit and Toledo. Then this morning she got angry at me in the parking garage because I wasn't looking right and left while trying to avoid hitting the car in front of me and missing parking spaces. Finally, she got pissed off at me again because I kept telling her I knew where to go because I could read the signs and read the floor number in the email they sent. But she seems to have ratcheted down the crazy since we got the answer.
One last thing- I am on Facebook primarily because most of my relatives, including my brother, along with many friends I never see and I'd never talk to any of them otherwise. I posted the uncensored picture above. Some asshole I friended because we had a bunch of mutual friends and I assumed he was someone I know but had forgotten about (I usually just unfollow such people and never hear from them again) posted on that picture with the comment, "you look healthy, you'll be fine."
I really had to fight the urge to respond, "motherfucker, if I was fine, I wouldn't be at the fucking Mayo Clinic." I talked to two different cancer patients waiting for their oncologist today. One had appendix cancer, which is quite rare. She said it was stage four. She "looked healthy" too.
It's almost as if external appearances aren't a good metric for health, isn't it?
Edit: I'm supposed to swill that awful shit in my mouth for a full minute, but I could only handle 30 seconds because it tastes so awful. However, I was able to manage two bites of potato salad. It might not have been the best choice because the aftertaste of (I think?) onion is getting to me and I have to drink an Ensure to get rid of the taste, but it's still progress. It's so weird because I can barely taste or smell it, but it still has an aftertaste that I find unpleasant.