Day 8 or 9

I forgot the count already. Yesterday was a lie, it is all back! The headache, the blocked ears, everything… In case of a real apocalypse, I want to be the first one dead! Surviving viral infections in 21th century with food, clean water and sewage systems is not something I can accomplish. I can’t possibly imagine myself raising from ashes to save the humanity.

Or maybe I could survive… as a zombie tough not human, or vampire. I’m eating the wrong food, maybe I need zombie or vampire food to get better 😛 (as in a joke!)

What’s Happening?

Day 7

I actually feel fine. I spent the day sleeping with high-fever. Oddly enough I didn’t have fever till today. I woke up to eat food only and drink some water. At 5pm today, I woke up again for dinner (only to realise that I have slept too much and my brain forgot how to function) with no ear pain, no blockage. Sure I still have my sinuses full and my usual tinnitus level but my ears…

The long standing problem I had with them… Could this be the end of it?

As I was told, I have bilateral hearing loss, cookie bite shaped. It’s hereditary and I should not worry about it at all. I kept it checking with this awesome program:  Hearing Test . I was convinced that after a year of no change in the level that it was something I always had, even tough it was discovered after a long lasting respiratory infection. Today for the first time my hearing did increase. I only have a dip at 2 kHz. The rest is pretty close or above 20dB.

Have I finally grown up and fighting back with those bacteria? I wonder whether that 2 kHz dip is related to a damage by infection. Let’s see if I can preserve this level.

I have the urge to write to all the doctors I have seen so far and say politely that they were wrong!


Dairy of a Survivor

Day 5, still keeping my hopes up. I’m not a zombie yet. Not a vampire either, I still don’t shine under the sunlight. I might turn into a werewolf tough, I am getting allergic to my silver jewellery. Perhaps it’s against all the jewellery not particular to silver. I’m getting a bit sick of people fighting over so called treasure.

I have come to realise that my immune system didn’t actually kick in much. I did get some IgM perhaps but IgG is not going to be produced anytime soon. Today, my right ear is fine without any medication. But my left ear is as bad as yesterday. So I will go back to pseudoephedrine and paracetamol.

I said hello to bronchitis symptoms today. How lucky I am, my larynx was spared this time. From today on I will determine a category for my respiratory infections. It is such a big part of my life, it truly deserves its own channel.

I have finished the Black Mirror series on Netflix. It’s mesmerising! It is dark, twisted and futuristic. Do not be fooled, it is today’s life with a fancier touch.

Happy Back to the Future Day! We haven’t got everything they predicted but at least some of it.

Love microbes

On the bright side of being ill, I have a chance to do Korean Drama Marathon. This time it was “Secret” and “Producers”. No I don’t recommend you to watch “Secret” unless you are sick and you just need noise to be around. “Producer” was bearable but it ended so abruptly. Watch “It’s OK, It’s Love” or “Master’s Sun” instead they are much better. Being ill also gave me the chance to level up in Diablo 3. Now that my immune system kicked in, I get headaches and feel tired.

Day 4, this time my immune system reacted on Day 4. I’m of course not counting the days where I only had a sore-throat and did everything in my power to prevent it. I tell you nothing works. If it’s gonna take over your ears, nose and throat, it will take over your ears, nose and throat. I envy people who takes one aspirin on Day 1 and they are ok the next day. This virus is quite different than the rest tough. Past couple of years, I got used to starting with laryngitis and then having all the other -itis on the side. This one decided it will just mess my sinuses and ears.

It left me in pain with completely blocked ears for days. Not exaggerating the blocked ears. My hearing was impaired. Right ear was hearing 20dB less then usual, which would place me on the age of mid hearing loss. Left ear was still on the mild range as its used to be. I usually take pseudoephedrine and I feel better after. This time nothing helped. Not to mention the pain and the tinnitus.

Now that my immune system kicked in and it’s fighting, they are a bit better. But I have a headache that is not helped by paracetamol. I have never ever had a headache not cured by 500mg of paracetamol.

Talking this long about a simple respiratory infection, as you can guess I am quite bored. I gave blood samples for genetic screening last Friday. They are going to sequence my STIM1 gene. Hurray!!! Since I got the diagnosis as TAM, my doctor looked up some articles and decided that I should get this gene screened for mutations. Well I, of course, knew about this gene all along. But I try not be a know-it-all at the doctors office. Not always helps, like during my last visit to ENT. She spent 30 seconds on my diagnosis. She has an underbite. Her tinnitus and pain must be caused by the jaw. I hate to say it but it was bullshit. My jaw had nothing to do with it. Sure I might have predisposition due to the anatomy which would include my jaw shape but tinnitus and all that problems started after long lasting infection. It’s most likely eustachian tube dysfunction. Diagnosing yourself doesn’t go beyond guess since I can’t take a CT or MRI to rule out anything else.

I should get rich and invest to the labs for the analysis of my upper respiratory infections. Or just wait for the STIM1 sequence. If there are mutations to it, it would explain my problems with them. I hate being sick. It hurts and nothing helps. I cannot even use onions for cooking when I’m sick. They burn like hell when I chop them.

Waiting room is this way!

This is one hell of a waiting time… They even placed a counter (not saying for what but you can guess). In the meantime I need to write my thesis. CounterI also have a very exciting structure to look at. The GlyR structure is out! Not the best resolution but it is in multiple states. And I’m no expert (well compared to researches studied these channels for more than a decade) but it will (not might) shake our view on LGICs. Just when I think the picture was complete, it just got more exciting!

Survival Guide to TEVC in Oocytes

Lessons learned this path month:

  • If you are working with a new compound have one control that you know the response to.
  • If you are working with mRNA, get one good stock and abuse that as much as possible.
  • If you obtained a fancy perfusion system, get a simple one in which you can just dip into the vials and prepare solutions on the fly.
  • If you ever get a response from one oocyte just record the whole damn thing… modulation, dose response curve… whatever you can think of… you may never find that response again!
  • Don’t out smart the bioanalyzer … If it says equilibrate it at room temperature for half an hour, let it wait for half an hour not less.
  • Learn not to weep over a 96 well plate full with oocytes thrown into the graveyard… actually cross that do cry over them, because you have just spent an entire week waiting for nothing.
  • If you ever let them outside, record max in 2 days.
  • Plan ahead when to inject, when to record!

Even better just stick with your simulations, don’t bother with experiments 🙂 It was so much fun last week, I manage to get concentration curve from 2 oocytes. I was ready for alcohol modulation… But no response. I tried like 20 oocytes… nothing nothing! Why o why you do this to me oocytes. I am sorry I had to abandon you and do shit loads of writing. I have deadlines, you know!

Got the diagnosis…

Ok I’m happy that I have a diagnosis. It sounds stupid. But I am. I am happy because I have been doing the right thing all along by not pushing my limits. I accept the fact that I should still exercise within my limits. But now I know I was right when I kept saying to people ‘No, the pain doesn’t go away, it doesn’t get better!’. I can say with all my sincerity ‘Shut the fuck up!’ next time somebody says something on this matter!

After browsing through dystrophy and myopathy catalogs, trying to match my symptoms and findings… Muscle biopsy lands the diagnosis: tubular aggregate myopathy. A rare type of myopathy with only major finding being the tubular aggregates in muscle fibres. I believe it is more common than they think. If you have this slow-progressive degenerative disease, you are most likely to avoid painful activities. Limit yourself to a life with little physical activity, find a job that doesn’t require muscle power, live a life with no so bad symptoms and never ever see a doctor for it. To be honest I wouldn’t see a doctor if it wasn’t the diagnosis my brother had (well increase in pain and difficulty climbing stairs during the last coupe of years of course contributed greatly to the decision of seeing a doctor).

It’s progressing slowly, in some cases not progressing at all. But one thing is for sure. If you think you are going to gain strength by ignoring the pain and overexercising, YOU ARE DOOMED. This is not Lorenzo’s Oil. This finding is established by patients themselves. When they overexercise and push their limits, the disease got worse (from what I read online). That said your TAM, may not be my TAM. I rock at toe-walking, you may not. I have fatigue, you may not. You may have lost your ability to walk, I did not. Two things remains the same. Firs one is the pain in skeletal muscles. Second one is the major finding; the tubular aggregates in both muscle fibres (EMG, EEG, CK levels may be normal). I should also note that mutations (oh yes baby, it is a genetic disorder) causing the disease could be both de novo or inherited. It can be autosomal recessive or autosomal dominant. It could appear only in males or it might hit both genders in the family.

What I am trying to say in summary, there are subtypes of this disease. I’m not sure if there is an official definition of these subtypes. It’s been around 50 years since first they identified tubular aggregates in muscle diseases, all credit goes to Enkel. As you can guess 50 years is a really short time to establish anything for such rare diseases. How would you get funded for it when it is this rare? No, no don’t loose hope yet. Advances in imaging techniques and genetic screenings are our allies. There are scientists out there who identified one or two potential candidates (mutated genes). I’m not saying there will be any drugs to ease the symptoms anytime soon. But I believe understanding the metabolism of the disease is one of the greatest cures one can get!

Here are the articles, sorted by date: Google Scholar.

It’s not deadly. If I take care, I will live a long, happy life in which I get to say many times to people who makes me feel bad about not being active in sports ‘Shut the fuck up!’.

And the wait begins…

Ok it hurts. It’s bearable but annoying. If you are a person who cannot scream like me, get ready shedding tears. They tried distracting me during the procedure, they did kind of an awesome job in that. But… oh dear… when they pull that muscle pieces out, I felt the entire muscle being torn apart from my knee all do way to the incision point.

It sucks that it will take a month for me to get the results. But can’t blame anyone. The decision making is done by professionals on different fields coming together once a month and going through all the cases for that month. The more minds on the case the better the decision I guess.

A month and then we will see if all is on my head, or the pain is real.

In the meantime lying in bed for the first couple of days, coughing, writing. Hah maybe they will also diagnose my recurrent upper respiratory infections 😛 Also learned today, I’m kind of toxicated by 1000mg paracetamol, had a good 5 hour sleep.

Lots of ‘Oh no! I didn’t finish the project!’s and ‘Why?’s …

Starting to feel like my brain is the crazy one here and there is actually nothing wrong with my body. Now I’m suffering from knee pain… I have been standing a bit more than usual, but so what! You don’t have to punish me for several days for that. I got the message already.

I came home early because of the pain with little motivation to finalise the analysis on GluCl, I decided to finish the project for the course ‘Software development toolbox‘. The course was very useful. I actually think I would do two PhDs within 5 years, if I had learned and applied all that. I probably should fail the course for delivering the project awfully late though.

Regardless for now I should focus on finishing the project, otherwise I’ll never start using github and I’ll never create proper documentation.

Here is the link to the project’s website: .