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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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Chronic Fatigue & Pain Syndrome
25 February 2015
Posted in About me
Yesterday I've been to the rheumatologist and I have a couple of results. That's some good, bad and worse news though...

The good news is that I do not have rheumatism (that could be found) and there was also no sign in my blood of muscle degradation. Even better, according to the blood works I'm perfectly healthy (Hmmm.... I've heard that a lot before...)

The bad news is that the cortisol levels in my urine were way too low. This mostly happens when there's a stressful situation for a long time. Well, I did have a lot of stress in the past. The worse has been 15 years ago and the last time about 5 years ago. The rheumatologist told me that this could not be the cause of the low cortisol levels. But she did tell me that a low level of cortisol might cause fatigue in the muscles, but it doesn't explain the constant pain I have in them...

The worse part of the news is that I now officially have a diagnosis of Chronic Fatigue Syndrome and Chronic Pain Syndrome. This is something I kinda already figured but I'm not happy with the official diagnosis of it. I mean I'm 46 in 2 months and basically a cripple

The rheumatologist wants to send me to a CFS/CPS center for further examination and treatment, but there's only one in Lelystad. That would mean at least 2 hours of travel by train for me and is not an option. She then remembered that the VUMC in Amsterdam also has a similar center. She decided to send me there for a 2nd opinion (waiting for the VUMC to call me for an appointment - prolly in 2 to 3 weeks from now) with the note that from there they should send me to the CFS/CPS center as well.

With that, I've been to my lawyer as well today for the appeal he's making against the UWV decision that I'm now less unfit for work than before. It was a constructive session and basically, each and every job they've found for me should be scratched. He also advised me to visit my doctor next week (he's on holiday now) to send me to a neurologist and see if the pain and fatigue comes from the nerve system after the long term B12 shortage. He also advised me to ask for some more blood works regarding allergies to synthetic fibers (I am allergic to those and 2 job descriptions let me work with them). Though I'm not sure that's possible to prove that from blood works.

Oh and BTW. My hands (mainly the right one for being righthanded) is starting to ache more and more. Typing this hurts like hell already. I hope that this is not the start of an expansion of the fatigue and pain I have. If so, it would also mean that I should give up programming or slow down big-time on it

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Fatigue getting worse
21 February 2015
Posted in About me
I'm getting the B12 vitamin injections now for about 5 months. I'd figure that in that time I should have felt some improvement already, but instead I feel things are getting worse instead.

The pain and fatigue in my legs is getting worse over the last 5 months instead of better. When I cycle, I'm not able to get the gear past the 3rd (of 7 total) and that's only when there's no wind coming from the front, though normally I try to cycle in the 2nd gear. When I have any kind of obstruction (wind or a real small slope) when cycling, I really have to switch back to the 1st gear and still have trouble

Walking is almost as bad as well. Okay, I'm still able to walk, but when I have to walk for more than 10 minutes (to the supermarket for instance) I'd rather take the bike because after that 10 minute walk my legs start to ache a lot and walking becomes a real pain. Not to mention, I start to walk 'funny' because I can't use my normally anymore because of that cramping ache that I have

If my legs were the only problem, I'd be somewhat okay with it. But I noticed that my hands start to ache and cramp more and more as well. With that I'm having a constant fatigued feeling in my right hand already (yes, I'm right handed) also causing less force to be used with the hand - at times I can't even open a fresh bottle of soda During the day this (new) fatigue in my hand gets worse and during the evenings I have to make a fists with my hand to relieve the pain and fatigue a bit (not that it's really helping against the fatigue, but it does work against the pain for a few minutes).

Then there's the total fatigue I'm experiencing. These days I have to lie down more and more because I just can't keep going on anymore. My whole body is fatigued and tired and after an hour's rest (lie down on our comfy couch or even get to bed at times) does work a bit. Though I don't fall asleep, I do doze off a bit. Sadly, this now already happens twice a day and I'm not giving in on more rests because I just don't want to...

This afternoon we'll be going to friends and I had to keep an easy week (read: don't do anything if I can prevent it and I went only out of the house twice) to save my energy and not be too fatigued. Though I do feel the fatigue in my body, I am going. I don't want this fatigue to take over my life too much (though I feel that it already does take over).

It's a good thing thing that coming Tuesday I have an appointment with the rheumatologist again and I hope she has some results of the bloodworks as well as a possible cure or treatment. As said, I don't want to let the fatigue take over my life and I'm too young (45) to be a cripple and unable to live a normal life

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More restrictions means more work abilities?
15 February 2015
Posted in About me
I promised ab update on my personal situation last Friday. This update is one about my re-examination of my limitations to work. I had he medical re-examination on January 20th already, and last week I had the results what that'd mean for my abilities to work.

As I already heard on January 20th, I'm getting additional limitations to the ones I already have and these are for walking, standing and a bit to sitting. But the results were quite odd. Where in the past I was unfit to work for close to 68%, now with the extra I'm only unfit to work for 61.31%

Early this week I had the written confirmation about this, which includes the list of restrictions to work. And there are some odd things to this list of restrictions...

First off, walking is restricted. As I've already written half December when I was having trouble walking my mail-route for 3 times half an hour in 8 days time. Well, this has been translated into a maximum of a 30 minutes walk a day in one go. Hmm, not sure, but that's not what I told the doctor... This restriction also translates into an on and off walking job for 4 hours a day.

Then the standing restrictions. I'm having trouble doing the dishes, do some cooking and stuff like that. With these household jobs I'm standing between half an hour and an hour, and during that time I'm switching from one leg to the other to stand on to relieve the strain in them. Doing so I'm leaning on the kitchen sink to rest a bit as well. This has been translated into a limitation of standing for a maximum of 1 hour straight or (once again) on and off 4 hours during the day.

Sitting is a bit restricted as well. I can sit behind my PC for 1 to 2 hours in a row. I do have to say that the chair I'm having is fitted to the lenght of my legs so that I'm having a minimum of pressure on them when sitting with my feet on the floor. When I'm playing on the PS3, I'm sitting on that same chair, but with my feet on a 75x75cm foam die (yes I really have such a cool chair/footstool ). In this position I can sit for hours. The restrictions to sitting are a bit more odd... I'm restricted to 2 hours in a row, but 8 hours during a working day

Okay, so much for the restrictions, now lets find the jobs they have found that fit these restrictions. Also keep in mind that I'm limited to 6 working hours a day because of mental limitation, which is used for all jobs found...
The best one is cleaner for buildings I mean seriously? That's a walking/standing job and should limited to 1 hour a day when looking at my standing restrictions, or even 30 minutes for my walking restriction...
An other one they found is metal worker with machines. Well, I'm not sure, but isn't this a standing job? And the same goes for the 3rd one they found - packager. That one is most certainly on an assembly line, which is always standing. Not to mention, both jobs require a very intensive usage of my arms and though I don't have restrictions on them, I do have problems with my arms when I'm using them intensively. For instance when I peel a couple of potatoes for dinner, I feel a starting fatigue in my arms (which I also mentioned that to the doctor I visited in January). If I'm forced in a job where I have to use my arms intensively, I'll most certainly get the same problems there as I have now in my legs.

Needless to say, I've called my lawyer, who has by now made an appeal against the decision. He even stated that I should be labeled permanently unfit for work. Though that's not hat I want, if it takes this to get the time to recover from the effects of the B12 shortage (if possible - I'm having my 2nd appointment with the rheumatologist coming Tuesday) then I'm okay. After all, when I think I'm ready to start working again, I can say and do so...

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04 February 2015
Posted in About me
Looking back on this blog on certain neurological pains I had before the B12 injections started that are now gone I had them already in 2007 when I was sent to the eye hospital, and that was already a follow up on earlier neurological and optical examinations in out hospital in Alkmaar. This would imply that I already am suffering of low B12 for about8 to 10 years, in which time my nerves and muscles could have been damaged pretty badly.

Yesterday I've been to the rheumatologist in the hospital to start the examinations on how badly my muscles have suffered from that severe long term B12 shortage. I had no idea what to expect, but I had received a form beforehand that I had to complete. The form kinda asked me why I wanted to visit the rheumatologist, something that already was sent to the hospital by my doctor, but I completed the form anyway.

The intake was long. Since I figured I wouldn't be examined immediately, she (yes, once more I have a female doctor, and she's in her 30s as well ) went through a whole checklist of questions. That took about an hour or so, and she already being late (what else is new with doctors later on a day ) it was around 15.30 (3.30pm for US readers ) when she was done.
I will spare you the details of all the questions, also because I don't want to grab the dictionary for each and every part of it (my medical English really sucks...), but in the end I've had 2 forms. One was for the lab to check my blood on 18 things, and the other one was for a 24-hour urine test (yes, I have to pee in a cup).

I went to the hospital's lab immediately and it was extremely crowded. There were like 20-30 people there and I figured I'd get to the lab this morning and only pick up the cups to start peeing today. Guess what? I couldn't get those cups from the person at the counter and had to get a number and wait in line. WTF? Just give me those things!
Well, being already pretty late I didn't want to wait and left so that I could go there today. That is, I'll be going in half an hour or so because the lab opens at 8...

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Heart is okay
14 January 2015
Posted in About me
I've been to the cardiologist yesterday and I have some good news. After having taking a new ECG and reviewed it, the cardiologist things that my heart is 100% okay again. Because of that I can drop one of the medications and see how things go the coming 2 weeks. If after that period I didn't have had any problems, I can drop the other one as well.

The cardiologist (a different one than I had before) also believes that the extreme B12 vitamin shortage might have been the trigger for the cramps I had early October as well. With the treatment of the B12 injections that I'm having now those cramps should not return any more.

He also advised me to visit a neurologist in about 2 weeks from now (that is if I don't have heart cramps any more) to see how bad the damage to the nerve system is that the long-term (8-10 years for sure ) B12 vitamin shortage is.

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Bloodworks okay
23 December 2014
Posted in About me
Yesterday I've had the result of last Friday's blood exams. All levels tested for (LOL - only B12 and infections) are normal. Actually, the B12 values were sky high, but that was because I've had the shot last a couple of days before that, which does mean that my body is accepting the B12 injections. The infections being normal means that I'm not having rheumatic pains, which is a relief as well. Though on the other side, the pain and fatigue throughout my body (and mainly in my legs) has to come from something (most likely years of B12 shortage).

Right now my doctor wants to wait on the 2nd opinion from the cardio exams that I'll have January 13th before doing new tests. He thinks (and hopes) that that 2nd option will give some sort of result, though I think it won't. Ever since I quit using that cholesterol medication I haven't really had any pressure on my chest any more, meaning that that medication kept the initial problems I had in place..

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Full physical relapse
19 December 2014
Posted in About me
When will things start to get better? When I quit taking the cholesterol medication and the fatigued and campting pain in my legs faded, I thought it would get better. There for my teamcoach and I agreed to start working 2 days a week on slow days (Wednesday and Friday) and take my small route. Well, that kinda backfired on me...

After last week's Friday I felt the fatigue return, but it wasn't as bad as it was and I figured it was because I started to work again and my physical condition had become a bit worse. After all, I've been home sick for 2 1/2 months. But the fatigue didn't really go away again. Early this week it was still there, but I could do my daily things as I used to.

Then Wednesday came and the postal route was quite a lot. Instead of the normal 10-15cm post on that day, I had a fully stuffed bag this time (60-80cm post ), all thanks to x-mass. Nothing bad about x-mas, but it was a lot more than expected. Without complaining I started to work, did my route. But halfway through it my legs started to ache again and it became worse and worse.

The next day (which is yesterday now) the fatigue and muscle ache was that bad that I wasn't able to walk normally. With this fatigue and muscle ache returning I decided to call my doctor and she (Fridays there's a female doctor instead of our normal one) had a spot ready only this morning. I also called in 100% sick again for work that same day.

Today I've been to the doctor and she took a look at my legs and feet (didn't mention them, but those are aching like crazy). I also mentioned to her that my arms and hands (mainly right, but I'm right handed) are starting to fatigue as well and ache a bit as well.
She isn't sure this is the result of long-term B12 shortage, also because having the B12 shots now already for 2 1/2 months, the fatigue and cramping pain should go away and not return and spread (to the arms and hands). The opted that it could be a form of rheumatism. For that she wanted my blood to be screened and while at it, the B12 value should be checked as well. Having had the B12 injection only last Monday, this value should be normal at least, if not sky high.

For now she's waiting the results of this blood screening (should be in next Monday) before taking further action. With that, half January I'm having my 2nd opinion on my heart and she wants to wait for that as well before sending me to the next specialist...

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B12 treatment - the good and the bad
04 December 2014
Posted in About me
It's been about 10 weeks now that I'm on the B12 injections to treat the severe shortage of B12 I have. I think now is the time to evaluate what it has brought me...

Lets start with the heart cramps I've had the Sunday after the first injection. I still think it's a direct result of an overload of B12 in my system that my heart responded to. After all, a B12 shortage causes fatigue and pain in the muscles and the heart is a muscle as well. Though it's clear by now that my heart is 100% okay, I still think that the cholesterol medication (which also causes muscle pain and craps) might be the cause of my heart cramping once in a while the last 2 months. Now that I'm off that cholesterol medication my heart hasn't cramped any more either. That while I've already walked for 2 hours straight two days ago...

Then the headaches and pain in my eye. Both are symptoms I've had for a couple of years already, but the pain in my left eye is the oldest one. Well, I can tell that both are mostly gone now, which means that I can live a rather 'normal' live. Normal is quoted because I do have ADD and Asperger Syndrome, and that's not something that can be cured in anyway AND the 'old way of life' is 'normal' to me (probably not to you )

An other symptom (which I realized after having read about B12 shortages) is the constant buzzing in my ears. This is still there, and when I listen to music it fades to the background. Oddly enough, the buzzing is there when I'm listening to music (or anything else) and not using earphones. This buzzing is something that I've had for decades already (first sign of B12 shortage?) and I wonder if this will ever fade or become less intensive...

I already mentioned that I'm off of the cholesterol medication. An other result of it is that the constant fatigue and cramping pain in my legs is almost gone as well. As I said above, I think that the cholesterol medication kept that kind of stuff 'in place' and now that I'm no longer using it, the healing of that symptom can start. I do have to say though that after that 2 hour walk I did last Tuesday the fatigue and cramp came back a bit but faded later that day as well.

Something that I've never mentioned is the pain and odd tinkling in my feet. That's been there for almost a decade as well. I loved how my wife gave me foot massages in the past, but at one point (2007 for sure) it became painful and ever since she couldn't touch my feet any more Well, the pain and tinkling is still there most of the day and mostly after I've been physically busy. But at the end of the day it's at a very low point and I hope that this will leave sooner or later as well.

In all, I think that the B12 treatment is doing me a lot of good. Though while thinking back of the symptoms I've had which are now gone, I certainly have had the shortage way too long. I just hope that none of the symptoms have done permanent damage to my body, brain and nerve system, but I do fear a bit that I actually did do some damage.
On the positive side of doing so well right now, I've already spoke with the company nurse (yeah, we have one ) and we agreed that I'd start next week with my small route on the Wednesday and Friday and see how things will go from there one. She specifically forbid me to get into industrial areas (which is my big route) for now, in case I'd get an attack and lie there for hours before someone finds me..

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