I have a new neuro doc - Esther Melamed  - and she seems competent. She is at UT Austin/Dell Seton. Already, she’s gotten me into a research program, referred me to a nutritionist and a social worker. The communication from her office is a billion times better than Aubrechtova’s, so we’ve got that going for us.

Melamed is running a ton of tests to confirm the MS diagnosis. Other potentials to rule out include MOGAD and NMOSD.

• MOGAD (Myelin Oligodendrocyte Glycoprotein Antibody-Associated Disease): A rare inflammatory demyelinating condition that can cause optic neuritis, transverse myelitis, and brainstem symptoms. Unlike MS, MOGAD tends to have more severe initial attacks but less long-term progression, and it responds differently to treatment.

• NMOSD (Neuromyelitis Optica Spectrum Disorder): An autoimmune disease that primarily affects the optic nerves and spinal cord. It’s often more aggressive than MS and can lead to severe disability if not treated promptly. It’s typically associated with AQP4 antibodies and requires different management than MS.

I have a new symptom the feels like a concussion grenade going off in my head—sharp initial blast in the back right of my skull that fades into a throb, then disappears after a few minutes. Super fun.

In other better news, my parents were visiting for a bit. Lots of food and games, we went to watch the bats take off from Congress Bridge, got barbeque, Brazilian steakhouse, the whole gambit. #meatsweats

They are continuing their 48 states tour on the way to my sister's house now. The cats will be excited to have Tammy Fae Baker out of their space for sure but I will miss her :(

Other upcoming - Ninja Sex Party concert this weekend!!!!! And my birthday at the end of the month. not sure if I'm doing anything for that yet. 

TL;DR - not feeling the best or the worst, new doc - test results to come, good to see the fam

No health changes or updates. Just crusin'.

Rode my motorcycle today with my new bags that Kyle got me for baby Jesus day. Chilly but good to be back in the saddle.

Oh what a few months! Who else is excited for January?! I'm getting increasingly terrible at updating this consistently. I hope to change that in the New Year to weekly on Wednesdays. Thank you all for all the warm wishes and space while I untangle this web of healthcare. I appreciate you all deeply. 🖤

Updates:

• Amitriptyline - still on it and liking it, may need to up the dose in the future. 

• Food Poisoning - it sucks. Had it over the weekend and wound up in urgent care again. Getting my stamp card positively filled this year. Who knew left over raw meat for Pho and shrimp rolls would do me that dirty. Most people turns out. But not me. 

• Had an MRI today - it'll be a while before the results are in. That will tell us if I need to switch meds, get additional treatments or if we are trending positive. 

• Allergy test - not allergic to ANY food. A bit suspicious on that one will was aversion to mint, chocolate and broccoli but whatever. Yay! Testing for all the tree sperm in the New Year. My money is on those ding dang Junipers. 

• Dental work complete - a whirlwind of an appointment got everything pending done. They also are going to test out some FANGS on me!!!! I'm so excited :D

• Christmas was great. Very relaxed and very Lego heavy. Just how I like it. Hopefully yours was similar!

Biggest News:

• Kyle and I leave for Paris today!!! We will be gone from 12/26/24 - 1/4/25. My phone will be off. If ya need me, try not to. If you have something actually urgent and not just a meme, email me! 

• Hopefully we will remember to take some pictures. We are going to try and cram in as many touristy destination type things as possible and alllll of the food we can handle and then some. 

• Big shout-out to Ryan for taking care of the kitties while we are gone so Kyle can sorta relax! 

• The planning and last minute passport acquisition has been a journey to say the least. It will be worth it to relax and adventure however. Feeling very loved by everyone who has helped to make this dream come true. 

TL;DR - Later Nerds! I'll address anything health related in the New Year ;) Miss you and love you!

So nothing really new to report. Still waiting on all the testing to be done, processed and returned. 

The Amitriptyline rocks so far. Sleeping very well and overall feeling pretty good. Playing a lot of Hogwarts Legacy!

Coming up we have another MRI, allergy testing, dental work and more! All in December O_o

Updates:

Kyle's party was very fun. Thank you to everyone who came! Pictionary at the bar is the vibe. As well as ice cream cake!!!

Unfortunately I wound up in urgent care the next day because 6 drinks was partying far too hard in my old age with all this business going on. But, met my deductible and out of pocket for the year - so it was a free IV treatment at the place just across the street!

Then I stabbed myself in the finger with the sink drain of all things. So trying to find a place to get a tetanus shot. Perhaps across the street again. They were chill. They even have Xboxs in the rooms!

Thinking is hard, sleeping a lot but still crazy tired, shaky, nauseated. The usual.

Appointment:

Always good when you doc mutters under their breath "What should we do with you.....?"

New MS specialist for my to work with in conjunction: Francisco Gomez at CTNG

She also suggested to look into short term disability to help recover. Will do but work is also in our slow season so it is not stressful, but instead a useful distraction.

Don't get the flu vaccine in my current state since I am fragile like flower.

New Drugs:

• Amitriptyline 10 mg - at night for nausea

• Methylprednisolone 8mg - steroid to help with weakness

• Promethazine 25mg - suppository nausea fix via the booty

To get done:

• CBC with absolute neutrophile count (white blood cell count)

• Comprehensive metabolic panel (kidney disease, liver issues, or blood sugar imbalances)

• MRI (yes another one)

• EEG for noted brain trauma on last MRI, then possibly an anti-epileptic drug

While I suck at nurturing fish and keeping plants alive, I excel at growing lesions! New MRI shows that those babies are still cooking along in there. They may be drug resistant, or it may have been long enough between the last MRI and when Kesimpta was started that they grew in that time.

Report:

• Since the previous examination, the patient has developed two plaque-like enhancing lesions in the posterior right temporal lobe. The more anterior measures 15 mm while the second more solid enhancing nodule measures 5 mm. There is an are of edema surrounding.

• The remaining previously described plaque-like lesions suggestive of multiple sclerosis are stable. There are no areas of PML and no additional enhancing lesions are seen.

• Pictures coming soon.

Lesion v Tumor:

A lesion is a general term for any abnormal tissue area, while a tumor is a specific type of lesion that involves abnormal cell growth. All tumors are lesions, but not all lesions are tumors. So until mine start doing something besides getting swol, lesions - not tumors.  

Feeling:

I certainly don't feel good. I'm very tired, super cranky, in a lot of pain. My left shoulder and right knee are on fire and I can't really bend them. Nauseated a lot of the time, especially when I wake up. Having trouble focusing and remembering things, even more than usual. Fun!

Plan:

• Imma be getting steroid IVs to help with the weakness an pain. Imma be hella swol bruh.

• In about a month I'll get another MRI to see if there is more growth or if the drugs kick in and stop the lesions.

• Neuro doc is also going to refer me to the only MS specialist in Austin. Wait time to actually see them is going to be quite long sadly. 

News:

• Today is the kitties birthday. Squee

• Tomorrow is Kyle's birthday!!!!! Very excited to hang with him and play games. Then on Friday we are chilling with peeps and celebrating. Should be a good time and excited to do something for him since he helps me so much on the daily. <3

Strap in, it's a long one. Just like my ______. TL;DR at the bottom as per usual.

Had 2 appointments today. One with a neuro surgeon and one with mah shrink.

The past week has been rough to say the least. Disappointment after disappointment is thoroughly testing my capacity. Trying to follow doctor's orders to destress I set up video games, Ketamine treatment, a massage. All of this and more went tits up. 

• Games were good but I had to tap out early since the first dose of Kesimpta was starting to hit me. And continues to do so. I have achieved a new level of fatigue.

• Ketamine got cancelled cuz my doctor was sick (finally rescheduled for this Friday. Fingers crossed.)

• The massage felt okay during and I was so excited for the head massage to relive my constant migraine, paid extra for it. She skipped it. And I felt worse afterwards than I did before. So so so sore and new shooting pains. 

• My glasses broke, my car is still in the shop, I'm not cleaning up to my standards, crannkkkkkyyyyy

  • They are offering me $20,500 and I owe $22,500 on it. Think its time to trade Susan in finally.

One good thing that has happened is I got some impulse fish and a shrimp. The shrimp may have already gotten gobbled up. The container I went to put them in had a crack in it so that was a bust. Thankfully Kyle came through with a dope vase that they have room in. They are fun to watch and are living on my desk for now. I am historically terrible at keeping fish alive more than a few days. Welp - spoke too soon. Got home, they are dead. Neato.

No side effects from the first dose of Kesimpta beside being the most tired I have ever been over a long period of time. No benefits either. I do not feel an improvement in symptoms. I think the increase in pain is just from the massage though. Brain has been real slow. Speech and memory are more of a struggle than they usually are. Fun. 

Doc Run Down

Specifically a neurosurgeon, not a neurologist but.... Lots of recommendations on specialists to see and what team to assemble. Looking at things from a more holistic approach and taking into account food, allergies, environment. We shall see what insurance covers.

• Pain Specialist - Charm (The Center For Healing And Regenerative Medicine lol)

• New Primary - Antoine Pham D.O.

• Ophthalmologist - Texan Eye

• Holistic (woo woo) - Dr. Maltz (acupuncture, allergies, supplements)

• Neuroimmunology - Dell/UT 

Also found out the I have an "old spine" while going through the MRIs

• • C5/6 bulging disk, arteritis in surrounding area, will need surgery in the future

  • L5/S1 damage similar to shin splints, will need surgery in the future

She was very nice and thorough. I appreciated her going through my MRIs with me. No one has done that yet. Shout out to CJ for the great recommendation. Hopefully I don't have to see her for quite some time as it would be for surgery. 

Couldn't find my car in the parking garage on the way out and had a little menty b in the stairwell. Good times. Then drove to work. 

Timmy Talk Time

Boy was there a lot to cover in an hour. How to process all the shitstorm that is raging. And what do ya know, Tim delivered. With lots of gross homework. Some of y'all may also benefit:

• Do better at positive self talk - Resource - in order to change my relationship to my body to a healthy one.

• Threat - Drive - Sooth cycle worksheet - to find out the best soothing techniques when e-stress-oed.

  • About

  • Sooth examples - yoga, walks, cuppa tea, weighted blankets, hugs, mindfulness, self-compassion

• Need to set reminders to do all of the above in an accessible way to keep me on track. Spreadsheeeeeet?!

• Ask for help from people when needed sooner and more often. Ew

Sounds like a lot but I feel a lot better with a plan and resources to manage! Squee!

Upcoming

• Tonight

  • Games!

  • Kesimpta dose #2

  • Pork Bahn Mi burgers

• Thursday - Date night. Wine and charcuterie samplers

• Friday - Ketamine

Lots of cleaning to get the house ready for when Skimberly comes to visit on the 30th!

I also might be moving/redoing this website soon. We shall see. 

TL;DR - Can't catch a break. I'm in worse condition than I thought. Don't need surgery. Yet. Emotions suck. I want a dog.

Holy snapping buttholes Batman, I got the goods!

Despite the best efforts of the medical system, I have prevailed. Accredo called to schedule my delivery of loading and maintenance doses of Kesimpta today, only to find that my doctor had CANCELLED the prescription because they had taken so long. Farts. So..... maintenance doses scheduled to come later in the month but loading doses had to be picked up from the doc today. Gladly, still at the price of $Free.99. Boogie, done, did it, got the sweet juice in mah palm.

Tonight the plan is settle in, make some food (lemon basil chicken lettuce wraps - pretty good) and administer the first dose. Hopefully I can still join in for game night during the anticipated sweats, chills, nausea, fatigue, etc... 

What a tumultuous day. I made several calls to Accredo (special pharmacy) and Blue Cross and got them to talk to each other and get this damn drug process movin'! Now I have one more approval hurdle before I can hopefully stab these thicc thighs with the good good juice this weekend.

Appointment Summary:

• To help with the pain and blindness: Methylprednisolone (steroids). 8mg tablet pack

• Get lab done for Hep B, finally. They didn't order it on the first round. Whooo....

• Dr. Aubrechtova's office is gonna call Accredo for me! and see if they can help push things along!

• Doc says my depression and anxiety at all time high. Can confirm. 

  • To help with this and a plethora of things (and my aversion to sun): Start some vitamin D3

  • Stop stressing so much and take a break on hounding health people. Lolll...

  • Do some meditations. Play more games.

• Since the vision and pain is getting worse but can't get that sweet Kesimpta, we're going to do another MRI for the brain. See if mah baby lesions are growing up!

  • My deductible and out of pocket are maxed so I would only pay $0. Great news!!!

Other:

• Kyle and I are going to Spirit Halloween today to get his outfit for Katie's party. Can't wait to be surrounded by the spook. 

• Ryan's costume is looking hella dope.

• Hogwarts Legacy is actually a very fun game with lots of good puzzles. Give it a goooooooo.

• Ketamine appointment on Friday. That should help with the pain and the anxiety and the sleeps. 

TL;DR - Still no Kesimpta, lots of other drugs. Additional photoshoot upcoming. Bring on Halloween!!!

• Test results:

  • • Lyme Disease - Negative (>.9)

    • JC virus - Slightly positive, still able to do treatment

      • If the positive gets bigger, there is a chance of triggering PML and starting the kill clock

    • Hepatitis B - pending

• Insurance has approved Kesimpta, but not sure on the cost yet. Potentially around $150 with support companies. 

• Still trying to get in to see Dr. Bodman for a second opinion. Boy does that office move slow.

• Stopped taking the Zonesamaid because it made me sleepy and in more pain. So fun!

No results for blood tests, insurance coverage, second opinion referral or medication update.

The update is no update!

We got all the reports in about 2 hours before my appointment. Hot Garbo. I'll keep it short here. 

Diagnosis: 

• Multiple Sclerosis, duh

  • 6 oligoclonal bands, 1 in my blood, 5 in the CSF

Additional Blood Work:

• I might be more than just MS, checking for things that negatively interact

  • Lyme Disease - similar symptoms to MS, impacts immune system

  • JC virus - this would fully alter treatment plan if found

  • Hepatitis B - similar symptoms to MS, impacts immune system

Treatment Plan: 

• Stop taking the Lyrica since it's not helping and just making me tried

• Start Zonesamaid: 100-200mg at night for pain. Anti-convulsant that should help with brain pain

• Send pre-auth for Kesimpta to my insurance

  • A drug specifically to treat MS

  • This will be self injected each month and slow the lesion growth and symptom onset

  • This costs about $120k a year without insurance. Hopefully less than that with it!

• Nothing can be done for current lesions or eye sight loss, just progression management at this time

Questions I Forgot To Ask:

• Service Dog: Should I get one? What are the discount programs? Or should I self train?

• Diet: Are there any adjustments needed? Research on this is wibbly wobbly. 

Insurance To Date:

• I've hit the Deductible of $3,500 for the year!

• Still have $4,787.27 of my $9,000 out of packet max to go.

• Moving forward 60% of treatments are covered. 40% is paid by me.

TL;DR - Finally have an official diagnosis. Things will not get better but they will get worse slower than they used to. More information expected after 9/24/24.

What it is:

A spinal blood patch is a medical procedure used to treat a condition known as a cerebrospinal fluid (CSF) leak. A medical intervention where a small amount of the patient's own blood is injected into the epidural space of the spinal column to seal a CSF leak. The primary purpose of a spinal blood patch is to address a leak of cerebrospinal fluid that may cause symptoms such as severe headaches, neck pain, nausea, and dizziness.

How it was supposed to go:

The patient is typically asked to lie down and may be given a mild sedative or local anesthetic. The procedure is usually performed in a radiology or pain management setting. A small amount of the patient's own blood (usually about 10-20 milliliters) is drawn from a vein in the arm. Using a needle, the blood is then injected into the epidural space near the site of the CSF leak. This is often done under fluoroscopic (X-ray) guidance to ensure proper placement. The injected blood forms a clot that helps seal the leak and promotes healing of the affected area. After the procedure, the patient may be monitored for a short period. Most patients are advised to rest and stay hydrated. Symptoms usually improve within a few days to weeks

How it went:

I've had a worsening bilateral headache since the lumbar puncture. Went in to the ER at around 11 pm and they gave me all the drugs: benadryl, toradol, zofran, morphine - the whole gang was there. Then they admitted me because a blood patch is quite a rare procedure and no one was awake to do it. So Kyle and I hung out and watch Sienfeld and napped. No food, water, IV, nada. Cut to 10 am the next day and they wheel me down to the CT room for the procedure. 

The doc was real specific on needing fresh blood from the pateient that had no access to fluids for 10 hours so that was a poke and stick fun time involving 5 different people and 7 failed jabs before an ER nurse finally jabbed one in my coratid and we were good to go.

Doc was definately an expert of the spine and got into the spinal column with just one small spasm of pain, moved the blood from my neck to the spinal column and slapped a band-aid on it. Laid back down for a few hours and home we went.

Headache is 1000% better and I overall feel a lot better now. Just the usual pain and a bit sore from laying down for basically 5 days. 

TL;DR - Blood patch went well, head feels better!

View the report:

Report

What it is:

A lumbar puncture, also known as a spinal tap, is a medical procedure used to collect cerebrospinal fluid (CSF) from the spinal canal. You lie on your side with your knees drawn up to your chest. Insertion area is cleaned an lidocane is administered. 

How it was supposed to go:

Once the area is numb, a thin, hollow needle is carefully inserted, usually between the third and fourth lumbar vertebrae.

The needle is advanced into the spinal canal, where it enters the subarachnoid space (the area containing cerebrospinal fluid). You might feel some pressure or discomfort, but it should not be painful. CSF will begin to drip out of the needle into a collection tube. Usually, about 3-5 milliliters of fluid are collected for analysis.

After enough fluid has been collected, the needle is carefully removed and a band-aid is applied. The patient lies flat for at least an hour to prevent leakage and headaches.

How it went:

A last minute change from the doctor to the Physicians Assistant who was clearly nervous, humming in the cold, quite room. She started right where most of my back pain from the prior injury was and couldn't find the juice. This lead to a lot of digging around in my nerve bundle, sending shooting pain similar to Sciatica from the tap point to my toes, mainly on the left. My body was not happy about this is was signaling me that something was very wrong and to run. Had to tamp that down to keep from moving and talk her though what I was feeling to try and help pinpoint the right spot. 

After rooting around and failing there we moved up 3 inches and started again. With no greater success. Had to call in a Doctor, going for the one they could find instead of their first two choices.... Who came in, slammed it home in a few pokes and got it started. Then flow was good and we filled up some tubes, getting 16cc of the good stuff and a few other cc of rejected fluid?

They wouldn't give me the extra, but it was in a simple tube and looked like water anyway. Slapped some band-aids on and laid down for an hour then headed home. Horizontal for a while. 

TL;DR - Fucking ow. Get a real doc. 10/10 do not recommend. 

View the reports:

Here

• CSF Nucleated Cell Count: 7 /mm³: within the normal range for CSF, which is typically up to 5-10 cells/mm³ in adults.

• CSF Lymphocytes: 96% of the 7 above: white blood cells associated with viral infections, multiple sclerosis, etc.

• CSF Macrophages: 4%: immune cells, relatively low and within a typical range, can indicate inflammation or infection.

Very fun office, there were pirate ships, paper mâché monkeys on the ceiling, quite the fever dream.

• Normal findings: Several areas like the nasopharynx, skull base, sinuses, and overall brain structure appeared normal.

• Sinuses: There is mild inflammation in the sinus linings, but no significant fluid buildup. (Allergies)

• Brain: There are multiple small abnormal areas in the brain's white matter, which are suggestive of a condition called multiple sclerosis (MS). MS is a disease that affects the central nervous system by damaging the protective covering of nerve fibers (myelin). Some specific characteristics of these lesions support the possibility of MS.

• Impression: The findings are consistent with multiple sclerosis, but there’s no indication of active disease progression at this moment (no ongoing damage or breakdown in the blood-brain barrier).

• Enhancing Lesions: When a lesion is "enhancing," it means it lights up on the MRI after contrast is given. This occurs because the blood-brain barrier, which normally protects the brain, is temporarily compromised due to active inflammation.

• In short, the MRI suggests that the patient may have multiple sclerosis, but there is no sign of recent or active damage.

Brain Report

Cervical Report

Images at top