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B12 difficiency still a problem
08 November 2017
Posted in About me

Yeah, what to say..? I've been diagnosed with a B12 difficiency since October 2014 and things don't seem to improve by a lot...

Normally when someone is diagnosed with a B12 difficency, they will recieve 2 suppleting injections a week for 5 to 6 weeks (I've had those)/ After that the injections will become less regular, and normally will be monthly for half a year, and after that once every 2 or 3 months (in most cases the rest of the patients life).

As usual, with me things go quite an other way than 'normal'. For the last 3 years I've had my B12 shots every other week, until late July this year. My doctor went on holiday, I've been busy painting my house and that's when I first had my B12 shot after 3 1/2 weeks. I felt still good at the time and decided to give it a shot (yes, pun intended) to get my B12 once every 3 weeks.

Sadly though, the last 2 shots I've had on my 3rd week I suffered from severe fatigue again and the cluster-alike headaches I used to have came up again  It's clear that my tripple psychological 'handicap' uses up a lot of B12 in only 2 weeks and I'm back on a B12 shot every other week again...

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Bipolar diagnosis - 1 year annaversary..?
26 August 2017
Posted in About me

Today a year ago I was diagnosed with a bipolar disorder and while i already suspected having it for about 3 years, I was glad to have the diagnosis. Though the cause of what made the confirmation was a bit less. Lets recap a bit for that last year (and a bit longer back)...

Somewhere in 2012 I talkes with a cousin of me who's been diagmosed with bipolar for quite a while. I visited her in the period after I had my diagnosis for Asperger's syndrome and ADD. We talked a bit about our psychological problems and after her story I suspected I might have a bipolar disorder as well, while she thought the might have Asperger's syndrome (which is also quite possible - she is REAL smart and pretty analytic in her thoughts, yet she is also very social...).

The thought of me possebly being bipolar kept nagging, but I didn't give it too much attention. Late 2015 I went back into therapy for my Asperger's syndrome and ADD. While the therapy didn't really teach me anything new (there's still no cure for autism, either therapy or medication), the depressions that I had from time to time kept coming.

On july 12th 2016 I spoke with my psych about my regular depressions (without mentioning bipolar!) and he came with the thought himself. He asked me to keep a mood log for the coming month and if it was possible for me to get my general moods from the last 3 years back (thank God for this blog, my Steam purchases and programming activities). The mood curve from the last 3 years showed a 'nice' sinus curve. This curve started with a 7-month period from depression to depression (with hypo-manic in between) and ended with about 4 to 5 months.In the mean time I was still recording the current month's mood, untill August 8th happened.

My therapist more or less confirmed that I'd have a bipolar disorder. But she's only a therapysts and not a psych, so it was not official (yet). My psych was at that moment on his holiday break, and I had intensive contact with my therapist in the mean time. When my psych came back I was immediately scheduled for an appointment and that was today a year ago. He immediately (after having read the reports from my therapyst) confirmed that I have a bipolar disorder.

At that moment the road for medication started. And while I'm not a fan of (chemical) medication, I figured that i'd have to give in to it. But with my history of allergic to extreme allergic reactions to different kind of medication, my psych didn't want to take any chance and ordered for a gen examination first (CYP1A2 and CYP2C9 enzimes) first, which showed later that I'm 'low metabolic' for the requested medication types (anti-depressives and anti-psychotics), meaning I need to start with a very low dosage and probably will keep side effects as long as I'm using it.
An other problem with medication is that my cholesterol is fairly high (always between 6.9 and 7.2, where normally 6.0 is the maximum), but that's a family related thing and ever since I know of it (20 years already) it's been around those values, whatever my weight is. This cholesterol problem also limits the 'choise' of medication for my psych.
So I ended up with Depakine, taking only 600mg a day (for my weight I should have around 3000mg a day ;;)), and after the first tests I already was pretty close to the therapeutical values in my blood...

Then December came and I had yet an other pretty deep depression period. This time knowing the cause, my psych proscribed Cipramil (1 drop a day, where 16 is normal), and that totally backfired. That one drop made me so fatigued that I slept through most of the day At least it did get me out of the worst part of the depression...
March was up next and my psych gave me Depakine up front as a 'just in case'. Mut that March depression was shallow. I was tired (not overly fatigues), and down, so I didn touch the anti-depressives...
And then June/July this year. This time the 'missing' depression from March joined up and I had a long and deep one. This time I also took the Depakine (30mg a day) after about 5 weeks when it went too deep, and yes it helped me through it! I even asked for an other month's ration of Depakine for the next depression period I'll get...

In general I'm more than happy with my diagnosis. I know where I stand now when I'm both hypo-manic and depressed, and more importantly I GET HELP for it. It's no longer a 'Oh, depression periods  comes with autism and ADD combined' remark (which I had a lot in the past), but I'm actual suffering from a bipolar disorder. That also means my wife can keep a better eye on me moods as well so she can see an episode (either depression or hypo-manic) coming and perhaps even before I see it myself.
...perhaps it is an annaversary after all...

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Fatigue, Raynaud and ammonia
12 February 2016
Posted in About me

Earlier this month I promised an update on the topic of fatigue, but now it seems that it'll become a bit more larger topic. I guess from looking at the topic, you'd wonder how these 3 are connected, but I think they are. Though not overly shure (and I hope I'm wrong), I will go to the rheumatologist coming Thursday. So lets get started...

First of all fatigue... It's been an ongoing topic for the last couple of years already, but now things are getting worse than before. The last two to three months the fatigue comes to a point that all of a sudden it creeps up on me and within 15 minutes I am close to falling asleep. Though not litteraly falling asleep, I do need to get some rest or loose concentration with what I'm doing fast. This mostly results in lying down on our o-so comfy couch, but at times I have to climb up the stairs and need to go to bed to rest for a longer period of time (hours that is).

Then Raynaud's phenomenon... It's not a decease, but a condition of severe chilblains, which I've had for already a long period of time (decades). Lately though it's getting worse and last month I've went to the doctor for it and he confirmed that I indeed have Raynaud's phenomenon. As said, normally it occurs as a severe condition of chilblains, but it wasn't that cold this winter (we've had no frost during the day) and in-house I have it as well. The doctor adviced me to wear gloves to keep my fingers (mainly my right hand's pinky finger), butr that's to no avail.
Reading in on Raynaud's phenomenon, I happen to have secondary variant of it, because it's not on both hands (both hands would indicate a vascular problem). And that secondary variant is what a somewhat bothers me, because it's a symptom of something else in my body going wrong...

Then the ammonia... Now that's an odd one when it comes to the human body, right..?
Not having a real sense of smell, I noticed that my body odor has changed the last couple of months. It was only recently that my wife told me that I had that slight hint of ammonia around me. I googled that (Google is not my friend, and I used Yahoo instead ) and found out that it's caused because my body is burning proteins (muscle tissue most likely) and that my liver or kidnies are not functioning properly. Not peeing blood (though my urine has become somewhat darker over the last couple of months), my guess is that it's the liver not working at 100% (damn, no more booze to drink ). But then the question remains, why muscle tissue is burned instead of fat... I still am around 105kg and have enough fat to be burned...

How do these 3 things connect..? I have my ideas, and because of that I've called the rheumatologist for an appointment (which I have coming Thursday). With the previous findings of the rheumatologist (which I forgot to post here I just found out), I happen to have artosis in both knees with the right one aching severely from time to time AND she has found a dubious ANA value. At the time it was nothing to worry about, because the rest of the bloodworks didn't point towards muscle fibre inflamations (which she tested for the Raynaud's phenomenon and pain in my right pinky finger). Now with the symptoms stacking up, she wants to take an other round of blood and physical examinations to see what's changed.
After having read the Wikipedia a bit (and you see a couple of links here already), I'm starting to think of Sjgren's syndrome, whish also was consistent with the rheumatologist's latest blood examinations. With the current problems that I'm having it might indeed start to develop some more, though I hope not...

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My mental and physical state
22 October 2015
Posted in About me

2 days ago I promised an update on how I'm doing both mentally and physically. Though I promised I'd post it yesterday, I didn't feel up to it becaus eof an extreme fatigue that I've had all day. Sadly though, the night before I slept very well and around 8 hours (for a change), but somehow that caused the fatigue I think...

But before I get started on it, an opther couple of updates...
1. My WIA allowance has been canceled as of late September because if I can be busy on the computer (play and create games) for the better part of the day, the workinghour reduction of 30 hours per week is no longer applied. Of course, I've brought that to court te get the WIA allowance back.
2. I'm no longer working for the Dutch Postal Network (PostNL) because after the fatigue from the B12 deficiency (still on supplements for it), it also appeared that I'm having more medical issues than the deficiency alone. Most importantly is artrosis in both my knees, of which the right one aches like hell most of the time, and an other one is a dubious ANA, whcih micht cause rheumatic complaints in the muscle vibers and from time to time my right hand is aching badly and pretty much unusable.
3. Though not working for PostNL, I am on sick-leave for that 13 hours a week and the UWV company doctor thought my mental state was worst than before and wanted me to take an other neuro-psychological assessment.

The first one has been almost 4 years ago now and compared with the one I took early this month, a couple of things were the same and a couple were new.
The concentration test for instance where I was shown papers with different colors (red, green, blue and yellow) was the same, and I had to name them all. The 2nd paper showed them written in the color and I had to name them as well. The 3rd one was the colors written in a different one, and I had to name the color used, and that once again proofed difficult. But compared to last time I made a slight improvement.
An other couple of tests were 100s of questions (I've had 4 to 6 lists to complete - don't remember the exact number anymore) of which 2 were the same and the rest were new.

The diagnosis that came from it were indeed worse than 4 years ago. The autism that I'm having has been progressed, or rather is showing more than last time (it can't progress because it's not a decease ) and the same goes for the ADD I'm having. Where last time the psychologist kept things a bit on the 'good side', this time he made clear statements on how I'm doing and what my (working) limitations are, and those are worst than last time... He also stated that I do need to spend so much time behind the PC to channel my thoughts and relax my mind and that because I'm still sleeping badly (an average of 4 hours a night already and it was 5 a couple of years ago ), my psycho-somatic complaints as well as the artrosis and dubious ANA have no time to rest and thus the 30-hour working week limitation should stay as it was.

So yeah, I'm doing worst than before, and it also was the reason I decided to quit the blog a while a go. It's also the reason I'm not programming at the moment (my mind is badly unconcentrated lately) and take lots of rests.

Also worth to note that the latest neuro-psychological report has been sent to my lawyer to bring it into the court appeal as well. But so far I haven't heard on it, because that was only early this week (Dutch lawsuits are so slow, but I think it's like that everywhere...)

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Gastroscopic results
02 July 2015
Posted in About me

Yesterday I've had the results of the gastroscopic examination I had 2 weeks ago and it was good The point at the beginning of my small intestine where the doctor thought he saw something was just a bogus thing. The biopics taken were all okay as well.

As alternative I had the option for an examination for the end of my small intestine, but the doctor throught the chances would be real small for anything to be found there, because I don't have any symptoms that would indicate of problems there. With that, if the problem was at the end of the small intestine, my B12 shortage would most likely be not as extreme as it was.
And then there's the way of examination - rectal No way I'm gonna get that exam just to rule out that very slight chance something might be there...

Still the question remains where the B12 deficiency comes from, but from the moment I was sent to the gastronimical doctor I figured, that whatever the reason of the deficiency, I most likely would be getting B12 suplement injections for the rest of my life.

And speaking about the B12 suplemental injections. The last measurmenet of B12 in my blood was 'off the scale' at a value of 4400+ (the lab could not measure any higher). With B12 suplement being a waterbased serum, it'd mean that anything my body doesn't need should leave it by peeing it out. This would mean that my urine would be orange/brownish of color, b ut ever since I started with the injections my urine is still 'normally' yellowish. Unlike my wife (who also has a B12 deficiency) and indeed does pee orange/brownish.
Next week I have an appointment with the rheumatologist to discuss the results of the neurological and gastronomical examinations and what to do next. I will certainly bring this up and ask to check my kidneys and liver. Kidneys because I'm not peeing orange/brownish and liver because that's the place where the B12 is stored normally and I have no idea if my liver is still okay (I think it is because my skin is not rally orange from liver failure)...

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Friday's hospital visit
21 June 2015
Posted in About me

I totally forgot to post this...

Last Friday I've been to the hospital again for the results of Monday's neurological examinations. There's some good news and some bad news there...

The good news is that the results of the neurological examinations don't show any degradation of my nerve system. This means that (once again) I'm compeltely healthy. It also rules out neurological related muscle deceases like MS.

The bad news though is that once again I'm apparently super healthy and there's once more one less reason that points toward my chronic fatigue and chronic pain...

I hope early next month that the visit with the reumatologist (have to call for an appointment with her tomorrow) will get some more results other than a follow up of the stuff already done and a "I'm done with you and can't help you" result (I certainly won't accept that).

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Today's hospital appointment
15 June 2015
Posted in About me

Today was yet an other day for hospital appointments. This time it was for both gastronomical and neurological examinations. Yes, I was lucky enough to plan both on the same day. Not to mention, the gastronomical examination was one that had to be done on an empty stomach and I could plan it very early in the morning (the original appointment was around 2pm ).

First the gastronomical appointment... That was not a fun one - swallow a camera on a hose so that they could take a peek in my stomach and small intestine. And even now (4 hours later) my throat is still a bit sour But the doctor and nurses told me I was doing well (prolly to keep me calm ).
With this exam a couple of biopics have been taken (saw at least 3 cords for it and I know that with the last one they took two biopics), and I'll get the results of it in about 2 weeks. But the doctor did see something that might indeed indicate as a source of my B12 deficiency. Good thing that at this pretty painful and uncomfortable exam wasn't for nothing...

Then the neurological appointment. That one was 2 hours later and I took my PS Vita with me to keep me busy killing time (I did make some progress with Ys: Memories of Celceta ). This exam was not as uncomfortable but only painful - very painful at times! They used electro shocks to measure the response time of my nerves in my feet, legs, hands and arms.
The exams didn't show any obvious results, other than that from my knee to my foot only had a 50% power result. The doctors were not sure that would be a problem or that it's just that my nerves are very deep at that point. The results will be taken into account anyway though, along with all other ones. And speaking of other ones... They also tested something with my hearth and breathing and the extra regular beat my hearth gives could mess up that test as well...

Now the neurologist has to crunch the numbers, compare them to normal values and that should give an idea how bad my nerve system is. Coming Friday I have to get back to Amsterdam again for those results and hear what will be done further.

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Today's hospital appointment
20 May 2015
Posted in About me

An other week, and other appointment at the hospital. Today the gastrointestinal doctor was up to see if she can determine the cause of my B12 deficiency. She also had access to the bloodresults which the reumatologist requested and she she could almost certainly rule out gluten allergy. And having the blood works available, the B12 serum in my blood was off the scale: >4400 - the hospital's lab couldn't get a higher value There was also a 'red' result for one of my kidney functions (kinda forgot which it was, but I'll hear that next week from the reumatologist) which was requested because of that low 24-hour urine cortisol level.

I have asked around about that extremely high B12 serum value, and it's no problem at all. Any excess B12, like most vitamins, just leaves the budy through urine, but that does mean that the kidneys have to be able to filter it out of the blood (hmm.... one warning value on my kidneys, hope it's not the one related to filter out B12 from my system). But once again, I'll hear about it next week and will see (hear actually) what the values mean and how to go further (which is most likely wait for the follow up appointments from the 2 specialists I've visited today and last week).

Okay, then the gastrointestinal doctor's appointment. She took the low B12 score very serious (unlike the neurologist last week). As said, she ruled out gluten allergy as a cause because that's not been found in the blood works. There are however a couple of other reasons that can cause the B12 deficiency and she starts at the top of them (thank God - the bottom would mean an anal examination ). But the oral examination won't be a fun one either though. I'll have to 'swallow' a tube with a camera at the end so they can peek inside my stomach and my duodendum and they will take some biopts then as well...

The appointment for this examination could be done June 2nd. But for once I asked if it could be set on a later date, so that I could have it when I had to go to the hospital for a neurological appointment. Luckily that was possible and now the appointment is set on June 15th in the early morning.

And speaking of appointments to the hospital... The hospital is in Amsterdam and I live in Alkmaar. Though it's 'only' a rough 50km away, it takes a lot of time and money for me to go there. First off time: I travel by train and metro (in Amsterdam) because I don't have a driver's license AND parking is a huge issue almost everywhere, making the trip more expansive than public service to start with. For me the trip costs between 12,50 and 18,50 (depending on the time I travel - I have a 40% discount card for the train after 9am). These travel expenses are not covered by ANY health insurance, unless I take the most expensive one and that'll cost me an estimated 300/year extra. It's a good thing I own a house and can subtract the travel expenses from my income at the end of the year...
Secondly time. And that's even less a bigger issue than traveling by car. A single trip takes me about an hour. If I'd go by car I'd take me about the same time, but in a car (even on the passenger's seat) I just can't travel relaxed. In the train I can sit back on those pretty comfy chairs and doze off with my favorite music playing on the MP3-player.

For now I think I'm pretty appointment free until half June. Then all hell breaks loose again and I have 4 appointments already, not counting the follow up from the reumatologist...

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Yesterday's hospital appointment
16 May 2015
Posted in About me

Yesterday I once again had an appointment in the VUmc in Amsterdam. This was a follow-up appointment with a neurologist after the appointment I had nearly 2 months ago with the reumatologits.

First thinsg first - the intake. His first remark about the 114 value of my B12 being "That's not so bad" kinda set the tone on how I'm thinking about this doctor. He might be the best specialist of the neurological department there, but if he things that a 114 value of B12 is not that bad, he should do his homework again! This made me very happy that the neurologist (who acknowledges that 114 is way too low) sent me to him with a clear question.
Other parts of the intake also showed that this doctor doesn't know shit about B12 shortage. I said I was fatigues and was no longer working on my mail route because of the fatigue I experience and then he dares to ask me if I'm practicing sports - ARE YOU FUCKING KIDDING ME?!?

Then the physical exam. Well, that went well. Reflex tests passed but all on a lowered scale, but at least the reflex was there. Then he took a closer exam of my feet (where the majorty of the pain I experience is) and he 'tickled' with a cottonswipe. To me that fealt like he put the edge of a knife under my feet and scratched it hard and that feeling was there will about half an hour after he did it.

That pain sensation on the light touch however did point to a possible nerve disorder (He mentioned it, something starting with ANA or AMA or ANE/AME but my memory is so bad on those things and I can't find it on the net either ) and for that he decided to let me undergo an electromyography (EMG). Basically they'll put electrodes under my feet and this way they can see what's possebly wrong with the nerve ends in my feet and why I'm experiencing pain instead of tickling. And this exam basically was why the reumatologist sent me to this doctor in the first place.

Sadly though, because the VUmc is a big-ass hospital, they have as big-ass schedule problems. Therefor the EMG can't be done before June 15th, well, it could on June 10th, but that was around 8.30 which means I have to rise extremely early to get there (around 90 minutes by train/metro if I don't miss anything). And with the pain in my feet rising over the day I thought that was not an option, and thus the later one on the 15th was made (at 11am BTW). The next Friday (June 19th), I have to go to the hospital again for the results and see how further...

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Still 105
12 April 2015
Posted in About me

As I said half a year ago, I don't stand on the scale a lot. If it's 4 times a year it's a lot, and why be concerned about my weight when I don't have too much physical problems from it. Anyhow, back then I was a 105 and was quite pleased with it in my current situating where I'm not able to loose weight through exercising...

Last night I had some problems with a very strong heartbeat - a lot stronger than I normally have. Though it wasn't irregular (faster or slower), I felt my heart beating in my neck while I was not having a headache or did anything to cause my heart to beat that hard. Then I thought it was about time to stand on the scale once more, also because my tummy seems to be growing a bit...

The only thing I have set as a 'standard' is to stand on the scale in the morning right after I have taken a shower. Standing on the scale on a different time would result in an inaccurate measure compared with the last time I stood on it. While there's nothing wrong with measuring at night before going to bed, it is the time of day where you'd be on your heaviest (hint for female readers there ).

So this morning I stood on the scale again, and as the title implies, I'm still on a 105. I still think it's not the best weight for me, but being less and less able to exercise I think that keeping my weight stable (though a bit too high) is already an accomplishment. It means that I'm on the right track already. And knowing how much I eat (including the secret eaters stuff ) it means that I can loose some weight and get back to around the 95 I want to weight. Its just the simple fact to lay of the chips and suger just a bit more...

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