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?
My man! This makes me extremely happy to hear some progress for you on this. I have achalasia (throat doesn’t squeeze, so solids gets stuck in my throat) and I still remember to this day after 5 years, finally getting a doctor who was a diagnostic genius for my specific condition and almost cried in the office when she knew exactly what it was. I was at the point of having lost 20 lbs in a few weeks because I could not get food into my stomach. Five years later and I can eat almost like a normal person; just takes a sip of water with each bit of food & soft food.
While it may not be similar to your issue, I know what it feels like to have that emotional weight lightened.
Would love to see future updates and wish you nothing but the best on your journey to some semblance of a normalcy.
Thanks so much! I will try to give more updates. Achalasia sounds horrible. I hate it when I take a pill and it gets stuck in my throat or (sorry to be gross) swallow a booger at it gets stuck in there. I couldn’t imagine having to deal with that all the time. I’m glad you found a solution that works for you.
Hello fellow achalasian! I remember my first barium swallow test. They called in the radiologist since things were so abnormal. He looked at my images and just said “…huh”. Good times.
Did you have to go through with surgery? I had a Heller Myotomy with Fundoplication and after the liquid diet recovery period was over, it was the best decision I ever made. Naturally, I have to avoid dry foods or stuff like bread that turns gummy when I chew it as it is difficult to swallow. Also had to stop eating cow & pig because of the texture of the meat when chewed.
If you haven’t thought about it, let me go ahead and break your heart now… we will never be able to go to outer space because we require gravity for the food to slide down into the stomach. Not that I could ever afford to go anyway, haha.
I had the same surgery and it was very successful. Can’t believe it but it’s almost been 14 years ago. I got really lucky in that I still have peristalsis in the top two thirds of my esophagus so I can eat whatever I want 99% of the time. Still have to eat slow and I get terribly painful muscle spasms a few times a year.
I had the same thoughts about space after my diagnosis! I even worry about back injuries or anything that would leave me flat on my back in bed since swallowing would become difficult. Just SUPER grateful for laparoscopic surgery so I didn’t have to go through the old open chest version.
Be well and swallow smoothly!
OP I am going to run your story by one of my neurologists I work for. They’re way more specialized and might have an idea for you.
I appreciate the gesture, but they do not know my medical history and I don’t want recommendations over the internet.
Ok. I just want very badly for you to be better!
I do too, I really do. Also, there was another update from yesterday. They now do not think it is neurological. It might be behavioral.
Psychogenic is the word. I work in neuro. It’s a branch of neurology called functional neurology, and people can have psychogenic seizures (which looks like a seizure but isn’t correlated on EEG), and some people have what is called a functional tremor as if you have Parkinson’s. I think a functional neurologist might be your way to go as they treat this.
All I know is that the neurologist I went to yesterday said that he did not believe it was a neurological problem.
Ok. Let me just say though that a general neurologist might not be the one to answer a more specialized question like that, as we get lots of people in a mess misdiagnosed from general neurologists as a general piece of information for you, whereas the subspecialty neurologists have a much deeper understanding. There are also functional GI disorders, that’s what IBS is considered to be and I’m sure your gastroenterologist will have more to say about that.
But if you ever want me to find you a functional neurologist say the word. I work with one and he’ll give me names for your area no problem. Would be happy to do that if it helps.
Thanks, I appreciate it. If you’re closer to Indiana than Rochester, MN, I might take you up on that.
Flying Squid, I’m so happy for you! It must be a relief to finally see some progress.
Thank you. It definitely is, but the stress is still pretty high since now I have to worry about the next step.
I’m sure it is stressful. The unknowns that lie ahead can give you a lot to think about. I realize it probably sounds like a shitty consolation prize, but you are moving forward. I hope everything works out ok. We’re all rooting for you, brah!
I just hope they can give me something more to go on before we leave next week.
Your beard is dope, don’t you ever apologize for it again
As someone who has had a multitude of health problems, I am so glad that you are getting help. I have EoE, which really sucks, but I can’t imagine not eating at all. I had a condition finally diagnosed a couple months ago after years of being told nothing was wrong with me, which is better than being told it is probably in my head. I have chronic pain too, but it is “manageable”. Short version is I lost the genetic lottery, but I keep trucking along.
Also, lamotrigine gang stand up!
Definitely try Soylent (powder) as you can thin it out as much as you need to. I haven’t had the premade versions in forever, so I don’t remember. Worth a shot.
As far as traveling goes, try to find a coffee shop or something to chill at for a few hours, though the smell may be too much now that I think of it. That really blows that the Internet is awful there and I have had to resort to tethering in the past. I have Google Fi, so tethering is dead simple and just works, but yada yada Google is evil. Once upon a time you could only make WiFi hotspots on your phone if the actual WiFi is turned off, but I don’t know shit about iPhones.
Sorry about the nerve study, but make sure you ice afterwards. The pain doesn’t always set in right away. Had a rather agonizing drive home once…Make sure to speak up if it hurts a lot, or just feels…wrong. Ask for breaks if you need it. Nerve pain is something else.
Thanks! I’m sorry to hear about your EoE. I don’t drink Soylent, but I do drink Ensure (apparently nowhere near enough nutritionally, so maybe I should try Soylent).
One thing that is lucky is that coffee smells don’t bother me at all, so definitely sitting in a cafe is an option. And I’m talking to you using my phone as a hotspot right now, just not a wifi one for some reason. Tethering it is only a minor inconvenience.
As for the nerve study, I can’t ice it. I’m incredibly sensitive to cold on that side of my face. If it’s below about 50, especially if the wind is blowing, I have to keep it covered up as much as possible. People really don’t like seeing you walking through a store’s parking lot with a balaclava on when it’s 45 degrees, so I resort to scarves.
That blows. Hopefully your nerves don’t get too inflamed or it is in a spot that is easier to ice for a short period. I hate icing anything, but it was between that and continuing to scream bloody murder and cry in my car in the office parking lot. Only needed maybe 10 minutes and it was thankfully my hand/arm.
The first study I did they poked around the back of my neck and shoulders. I am sure you and everyone else is cringing right now. They put me in the fetal position and told me to be very very still… It worked out.
Have a gummy, vape a bowl, and keep your spirits up the best you can. Maybe do some art. Adult coloring books are the shit if you never thought about that.
Before you drive up to Minneapolis, there’s nothing to do there either. Walk/bike along/over the river is probably the best thing, and you can do that in Rochester too.
I want to go to the art museums up there.
So glad to see the update, I was wondering how you were getting on. Part of an answer is definitely a step in the right direction.
I remember your other post and honestly it made me, a random unrelated internet stranger, unreasonably happy to hear that there’s progress already! Like teary-eyed kind of happy.
So, yeah, thank you for sharing your journey! I hope your family doesn’t get on your metaphorical nerves too much more as you find ways to heal your physical ones.
You’re welcome!
As for my family, my wife and daughter (who aren’t here) are fine. It’s my mother, brother and late father who are/were all total nutbags.
I mean I’m unquestionably eccentric, but, and this is obviously a self-assessment, I think they’re much more nuts than I am. My wife, for what it’s worth, agrees. And the fun thing was that each of them agreed that the other two are nuts and not me.
On the other hand, as annoying as she is, we can have decent conversations. We didn’t listen to anything on the way up. We just chatted for the whole 8 1/2 hours. Not even any silent periods. I put like 30 hours of BBC radio dramas and comedies to listen to and we didn’t listen to a single one. We’ll see how we feel on the way back.
I remember you! What a bizarre case and, so far, outcome. Gods that must be a vast relief getting a handle on it.
I’d be scared shitless in your shoes. And we look about the same age, so I’m not unused to weird medical shit landing on me and my peers.
We would NOT be opposed to a follow-up once you learn more. You never know who will find your words while searching for their own issue. I’ve had posts come back on me from 10+ years back, asking for help with whatever I had said.
It’s been a rough ride for about a decade at this point, so in general, the scared shitless part is over, but I do get extremely anxious in medical settings in general, so that’s no fun.
As for another update, I’ll be happy to do so!
Ayyy nice beard
That’s great to hear that at least you’re on your way to a full diagnosis and treatment plan! Hoping for the best for you!
Thanks. I just hope it can all be done while I’m here because I really don’t want to come all the way back up here again.
Ahhh I’m so happy for you! What an awesome step forward. It must be such a relief! Q’apla!
Q’apla!
Cheers, mate! I’m glad to hear positive news for you.
I’m pretty thankful I haven’t personally run into the “you don’t look like you have cancer” thing 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.
Also big props for this. As a fellow cannabis user, I’ve been flummoxed and bothered by cannabis users who refuse to consider the idea that it may have a negative impact on their lives eventually, somehow. It’s at least healthy to consider it as a possibility, so good on you for having the self-reflection about the issue that a lot of people do not seem to have. Based on the erroneous belief that weed is magical and can’t hurt your some nonsense, I don’t know. Anyway, thank you, it’s nice to see, and I’m glad to hear you get to continue to enjoy it and use it medically. (I use it similarly, it’s about the only thing that calms my stomach with the meds I take.)
I hope from here the news continues to be good and that you quickly find a treatment that works for you.
Some of us could only wish you grow such a nice beard, be beard proud!
Haha, I have the massive beard Jewish gene so that has never been a problem. I usually do the Chester A. Arthur thing though.
Anyway, thanks. I appreciate it. And yeah, I am under no illusions that my heavy cannabis use will definitely never have an impact on my health. Even though I vaporize, I’m sure it’s not the best thing for my lungs. All I can do is hope I live as long as Willie Nelson (90) or Tommy Chong (85) despite using it probably as heavily as they have.
I didn’t see your prior post, but this is a nice, happy(ish) update! I hope you get nothing but good news going forward and your doctors can help figure out the best treatment method for you.
Also that asshole sounds like a real peach. Probably has no life outside of FB.
Probably. If he pisses me off again, I’ll just block him.
And thanks.
I’m very glad to hear this, having read several of your comments in the past relating to your health issues. Wishing you the best outcome!
Me too, thanks!
