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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 Sjögren'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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Reumatologist 2nd opinion yesterday
27 March 2015
Posted in About me

Yesterday was finally the day for the 2nd opinion that my reumatologist had asked for. For this 2nd opinion I had to go to Amsterdam's biggest hospital (VUmc) and to make sure I was in time I left at 9.20 from home. Sadly I was way to early at the hospital and to make things worst, the reumatologist was already half an hour late 45 minutes later she called me in (12.00 already) with her apology and asked if I was okay that an intern would attend. Of course I had no problems with that, because they have to learn the ropes as well...

She started with the 'regular' check-list of questions, but less obvious than the other reumatologist (that one just went down the topics on a computer screen, while this one just asked and made notes on paper yes, no computers there yet for medical files). When the check-list was done, I was asked to take of my shirt and pants for a physical examination.
One of the things she checked was the 'touching experience'. I know that sounds pretty nasty, but she just touched my feet, leg (under and upper), hands and arms (again under and upper) to check if the feeling was okay. With my feet I asked her to remove her thumb from under my feet because it was aching like crazy - this while she barely touched it. With the lower legs I said it felt normal and that I could feel her cold fingers. Her response was that she didn't have cold hands. When she laid her hands on my upper legs I confirmed that indeed she didn't have cold hand...
The rest of the physical exam was the regular 'limb turning around' she did and that went pretty well. Her last test was a pressure test where I had to put force on my feet, legs and fingers to see how much force I can make. Well, that wasn't as much as I should have...

With those results she decided to ask for 2 x-rays - one of my heart and one of my lounges (both should be fine I think). She also wanted to do some more blood tests. Some tests to check with the results of 2 months ago, and some new tests. One of the vials of blood even had to be brought 'warm to the lab'. And it was a pretty funny sight to see a sealed thermocup with hot sand being brought in to warm the vial and later put the same vial with blood in it and see the nurse run off to the lab

She also sent me to the gastrointestinal doctor to see where that B12 shortage comes from. Though I don't care about the cause, because all results lead to the same result: I need to have B12 injections the rest of my life, she was serious on it. Okay, if you want to know, I'll help you along with it. Perhaps the cause of my B12 shortage ;actually can be 'cured'?

Last but not least she also sent me to the neurologist. She wants to know how badly my nerves system has been hit by the B12 shortage. I know my nerve system is overstrung (see the pain sensation earlier when I was slightly touched under my feet), but she also wants some more research on it. She also wants to know how my muscles respond to the nerve signals and with that data she can determine an approximate of how much damage (from the B12 shortage) has been done to my muscles as well. And honestly, I also think she immediately sent me to the neurologist to rule out ME/MS as well..

Sadly such a big hospital also has a draw back. In this case, the 2 new appointment requests have been taken in, and I will hear (probably) next week when I can come for those specialists. Kinda sucks, and even more when both assistants told me I should now expect an appointment before the end of next month :cry:

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Company doctor
10 March 2015
Posted in About me

It was that time again... My boss asked the (new) company doctor to invite me for a visit. And yes, a new doctor this time... My boss has taken a new outsourcing company for the company doctors and because of privacy they're not allowed to share ANY medical date. This means that the new company doctor has not a clue what's wrong with me (other than what my boss told him) and I had to start from scratch all over again. I can talk very long about it here, but if you've been following the blog, you know how things are and the company doctor knows now the same now as well.

There was one fear I had when I went into the meeting and that was that the new company doctor would overrule the UWV's list of my restrictions and that he would just put me bluntly back to work, or in an other job in the Dutch Postal service (PostNL) which I could not do according to the restrictions I have. Well that fear was totally ungrounded. He actually took over the UWV restriction list for my current job and adviced my boss to find a job for me within the Postal services that would match my abilities - I can tell you, there's no such thing...

There was only one thing he didn't write down, and that is that my chronic fatigue and pain are getting worse. Instead he only mentioned that I'm in appeal against the UVW's decision not to have made a good report of my (dis)abilities and that he advices my boss to keep that in mind.

So basically, I'll be hope till the end of my contract (half May), and from there on I'll quit the job when being sick. I'm just wondering what that will do for my income though...

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