Goin' to the doctor tomorrow woooo

@thepreposterouspanda Give yourself a break, you're going through something that's got you in a headspace where everything you've been through is at the forefront of your mind.

I'm just trying to cheer you up, because I know how this kinda thing can knock you down. I know you're doing your best! 🤗

@seaglass Yup, it's true. :) I also hold myself to a ridiculous standard that I would never think of holding anyone else to and constantly chastise myself for not reaching it. Comes from growing up with a mother I was never good enough for I think. 🤔

I really appreciate it. :3 I'm so used to living in my head with all the negativity I throw at myself and it's nice to know it isn't deserved. 😅

@thepreposterouspanda Same here...

You deserve to feel well, and you should keep going for it, but yeah... be kind to yourself, as you would to someone you care about who was going through the same thing 😌

@thepreposterouspanda I would think that Charly horses would feel different. There are different levels and types of muscle cramps. But then again, everyone reacts to pain differently and it would also depend on your pain tolerance. What kind of spinal cord damage are we talking?

I had an MRI once that a neurosurgeon ordered. He wanted to see what was causing me to have reoccurring sciatica. He found I have degenerative disc disease in my spine as well as levoscoliosis and that arthritis in my spine spread to the right sacroiliac joint. It causes reoccurring sacroilitis, which is when the joint puffs up and presses on the nerves around it, including the sciatic nerve. Causes me to be unable to walk for a few weeks out of the month when it flares up because of pain and leg weakness. It's crazy what spine problems can do.

I read your comment about your inner ear. That could be causing your dizziness too. Inner ear issues affect equilibrium. You might need to see an ENT (Ears, Nose and Throat) specialist. Since your ears, nose and throat are all connected. That's why I laugh when people say to throw your head back if you have a nose bleed. You never want to do that. Throw it forward. If you tip your head back, you can swallow and choke on your blood. It's all connected.

If you have Sarcoidosis, which are clusters of inflammatory cells on various parts of the body, have you discussed with your doctor about steroid treatments and immunosuppresive drug therapy?

For the anxiety, I know benzodiazepines help me. I take a pretty decent dose of Klonopin. It doesn't hit as hard as Xanax all at once, but it lasts longer and doesn't work like shit as fast as Xanax. I also take a high dose Gabapentin (which is an anticonvulsant used to also treat anxiety and nerve pain). All my meds/psych meds are high dose lol. Meds alone can only do so much. Therapy can help with anxiety as well as the 333 exercise (Inhale 3 seconds, hold 3, exhale 3) (I do 575, myself). You can also try the whole... Submerging your face in cold water to induce the dive response and also stimulating your senses. When you stimulate your senses with comforting tastes (favourite candy, for example), sights (like a favourite scene or magazine), scents and so on-- it makes it easier to ground yourself. "5 things I see. 4 I smell. 3 I taste." so on and so forth. I learned a lot of Calming techniques in DBT because it was about riding out the urges to self harm and also how to deal with anxiety. I have a few worksheets that have all sorts of techniques I can DM you pictures of to try if you'd like. They help me a lot of time. Not all times, because a fair amount of my panic attacks happen without a known trigger, but a fair amount.


I'd also ask your doctor about conditions you could have that are mimicking/mirroring Sarcoidosis. Or perhaps a comorbidity.

@MemoirsOfTheDamned I have thinning in the thoracic area of my spinal cord thanks to neurosarcoidosis. It has made my legs tone themselves constantly since 2010 which results in cramps and spasms. Not charlie horses though, I dealt with those back when my hip was broken for seven months in 2011; after the replacement, they had to physically stretch my leg back out since it had retracted so much and I had the worst charlie horses for a few months afterward. They would wake me up out of a deep sleep and I'd have to hobble up and down the hallway on my walker until they finally quieted down enough.

Owww that sounds so painful. 😵‍💫 I wish medicine had come further when it comes to helping spinal cord and brain problems than it has, this stuff makes existing so difficult. Just means we're tough for surviving it though. :3

My sarcoid is actually in remission, or it was as of a few months ago. Gonna have them check my markers for that as well to make sure though. Steroids are the reason I broke my hip in the first place so I'm a little wary of them and immunosuppression just makes me feel like garbage; I was on Humira for a few years that I came off of right before Covid-19 happened. Lucky timing I guess (even though I still got alpha variant and had it for four months 😅)

I have Klonopin and Buspar but they both just added to my anxiety rather than helping it. 🤔 So many medications don't do what they're supposed to when it comes to my body and it's so frustrating haha.

I'm much better at grounding now than I used to be :3 Much better at walking myself back from the panic attack ledge although they're still completely exhausting and draining when they happen. I haven't had to call the ambulance for one in a couple of years though so I'd definitely call that progress! 😅

@thepreposterouspanda Well, it's natural for you to feel like garbage at first with immunosuppressants because they literally suppress your immune system. The very thing that attacks illnesses that enter the body and such. I can understand being wary of meds because of bad experiences, but sometimes the right combo of those meds have benefits that outweigh the risks, ya know?

I am sorry you have to deal with all of this. It's garbage you don't need.

Klonopin is good. Buspar? Ew. I will NEVER go back on Buspar bars. They not only fucked with my cardiac health, but they didn't do boo for my anxiety. Have you ever had a genesite test done? Might be worth looking into. My PCP ordered one on me to try to help my psychiatrist. Genesite looks at how your body métabolizes drugs and tells you what drugs have a moderate gene interaction that makes them not work as well. They swab your cheek and send it off to the lab. I found out that I had a double short allele of a specific gene (double meaning I get it from both parents) that caused medication resistance to a lot of psychiatric medications. Which is why the meds I'm on need to be max dose they can treat you with in 24 hours and some meds didn't work at all. It shows what drugs are suggested as well.

They can look into whatever classes of medications the ordering provider wants. My PCP looked mainly into antidepressants, anxiety meds and antipsychotics.

As far as psych meds go, I'm on:
200mg Zoloft (SSRI antidepressant)
300mg Welbutrin (Antidepressant)
2400mg Gabapentin (For anxiety)
3mg Klonopin (Anxiety)
200mg Lamictal (Mood stabilizer)
4mg Rexulti (Antipsychotic)

I take these each night and they seem to be the best combo we've tried so far. She's questioning dropping Rexulti and trying one called Caplyta. I've been on so many second Gen antipsychotics and even a few first gen ones (that go back to the 50s) and we still can't seem to control my psychotic symptoms such as hallucinations and delusions and such.

Anyways. We found that some of the meds I was on have a significant gene interaction that impairs the way they metabolize. So we've had to alter and change out meds along the way.

I'd look into it. Maybe for anxiety meds and meds more geared towards treating your Sarcoidosis. See what suggestions it offers.