06-11-2008:
Because of personal things I was not able to update my blog more frequent. I got married :D and my father passed away recently :(.

MS-wise I've been doing good. Last check my EDSS had risen slightly to 2.0 because of the diminished sense in my left leg again. I could not feel the tuning fork properly. My overall functions are simply perfect. It looks like I've stabilized. In the last 150 days I didn't have any relapse of some sort. However I know I'm still not 1:1 comparable with a 'normal' human being. I do get more easily tired but I've been like that all my life.

I got questions about walking. Well I can say I can easily do a few miles without any resting. Or let's say a day shopping :) I can run without any weird feelings in my body cause of the MS. I'm really happy FTY720 changed my life.

09-06-2008:
Today was visit 10. A typical short visit: EDSS score, weight, donate blood, how I've been doing and a new 3 month supply.

My EDSS score dropped to 1.5!!!! My lowest score to date. That was bit of a surprise for me. My both feet where able to sense the tuning fork. I know my senses are still not 100% noise free but I could feel it!!. Both feet feel everything and feel normal. Weird this time my left knee didn't respond to a reflex at all. While last it was extremely vigorous. Also my touch sensitivity felt better on my legs with the test "sharp or not" (broken tippy stick.. what side do you feel: the cotton or the sharp wood with your eyes closed). What I did notice the last 3 months is (may sound a little gross but it's what MS patients sadly have too) I peed better. The time it takes from "hanging it out" to actually start peeing shortened to a point where I had no difference anymore with before my first relapse ever. I do feel the amount of time is still somewhat off compared to other guys but as it is now it's been all my life.

As you might have guessed I had no relapse the past 3 months. However before the trial I experienced like if there was a rope being pulled hard around my middle. That feeling slightly resurfaced. Like even now, while typing this, I faintly feel it. It's more like a ghost whisper. I know this originates from my spine. At the same height I have a lesion the size of your thumb. Sadly during this trial no MRI's are taken of one's spine. If this stays the way it is I can absolutely live with it. Though after this trial or maybe sooner I want a MRI of my spine. Even if I have to pay for it myself because I want to know how the lesions are. If they faded or became sclerotic.

My remaining symptoms are:

• Slight problems remembering. A persons name for example. That takes 6 months before I do.
• Left knee reflex.
• The faint 'band' around my middle.
• Both hands still not feel 100% but rather 70%.

I didn't expect I could still make progress but I clearly can seen the tests. I'm a really happy person!!!

06-03-2008:
Visit 9... The full Monty this time because the 1th year of the trial is (almost) completed!! EDSS score (neurological exam), The extra tests: calculating and remembering in your mind and an agility test using your hands (first left then right) to put 9 pins in and out of the board. I have plenty experience of that because I own an instrument called the EMS Synthi it's has a similar matrix :D. And of course macula degeneration examination, Long function test, body scan for signs of skin cancer and an MRI.

My EDSS score was calculated to be 3.0 at this moment simply because I can't feel the tuning fork with my feet. I do feel everything with my feet but the inner, deeper embedded, sensory nodes are disconnected... so it seems. It used to be better. Strange thing is I can't notice it. Only with the use of a tuning fork. This time my reflexes on the left side (knee, feet) where more vigorous then right. It seems, compared to previous tests, my situation is not stable. Sometimes a certain body part functions better then an other time while for me it really makes no difference. I feel this is detail work so to say.

The rest of my condition is perfect. I feel the same as I was before the diagnosis. I can also feel my hands are getting better! So, it's only a matter of time before I can fully feel everything again with both hands. That would be the day :)

FTY720 clearly has caused less relapses in number and intensity over the period of a whole year and I'm *REALLY* happy with it. It literally has changed my life. I'm grateful for all those involved who developed the drug. Please continue! Your efforts make life for us, MS patients, way better. You made a difference! Thank you.

A note to all: FTY720 simply causes our immune system to slow down and effectively buying our body time to self heal (regenerate). The older you are the longer it will take to regenerate. I'm 37 at the moment of writing. Food, vitamins and so on are also important in the aid of regenerating. Stop smoking, eat healthy and balanced. Veggies, fruits, fatty fish they are all needed.

16-01-2008:
Visit 8.1... an extra visit. My liver values and cholesterol (5.1) where a bit too high... So this time sober and just 2 tubes. Just a precautionary check.

But then... good news!!!! After the 2 years a folowup is done for those who where in the phase III and want to!!! jippiieeee!!! *happy* LOL! Count me in :D

21-12-2007:
Visit 8 went OK. It was a realy quick visit. Gave blood, got a new supply of FTY720, EDSS score was determined again and that was basically it.

EDSS is 2.0 now because I seem not to be able to feel vibrations in my right foot (they use a tune fork @ 440Hz for generating vibrations) Yet the surface feels OK. It seems that this is linked to deeper embedded sense nodes in my right foot. Also I seem to react more vigarous with some reflexes and the bottom of my feet are extreme tickelish that is also MS linked so it seems (did not know that but it has always been like that). But I don't really care about such minor issues. It's more important to be able to walk and use both arms, hands and eyes!

Nothing much to report everything seems stable I did not got sick or feel drained. Sometimes a bit more tired then usual but that's because I stay up late or something like that LOL nothing MS related :)

I recently moved to a different city and I could lift the moving boxes and other heavy things! YAY I was really happy I could do that again. So generally: I'm OK :D

05-11-2007:
Amazing how fast one can forget one is actually chronically ill. I'm symptom free except my, now partly!, numbish hands. If this rate continues I hope I can write I am totally symptom free one day! That would be the day!!!

The last flare up (previous post) disappeared within a few weeks. I can only conclude FTY720 causes the flareups to be much much less intense then they usually would be. They don't disappear. I still get them but literally in a micro variant giving my body the hard needed time to regenerate while I still can.

Ok, I still can't walk too far but a week ago I did 2 miles!!! and I didn't even get tired. How's that for an almost cane needing person some 235 days ago...

On to visit 8!

13-09-2007:
Today was visit 7!

I had a mini-relapse about 3 weeks ago. Tremors in both legs and left arm. I woke up totally stiff in both legs and my left elbow. My feet and top of my hands became like my hand palms: numbish. It faded in the last weeks again so I'm on the way back. Downside is that my EDSS rose from 2.0 to 3.0 because of the numbness. Bloodwork etc. was fine. Had the MRI (few days back) and did all tests again. It all went just fine!

Personally I feel I'm on the 0.5mg doses. But we will see.

11-06-2007:
Today was visit 6.

My EDSS score has dropped to 2.0! I freshly remember I almost had to use a cane to be able to walk. (EDSS Score was 5.5!!!)

On to visit 7 for the full Monty including MRI! I'm kinda curious to see if the number of lesions also dropped....

02-05-2007:
Thanks to a fan mail from Mark, I think it's time to write down that 'all is OK'. I don't feel an extra side effect except for my 'old' pre-FTY720 related MS symptoms: spasms and feeling-less/numb hands. And to be honest it feels like my hands are improving juuuust a little bit. The delay (ghosting) and drop in frame rate in my eyes are still present however. I'm sure that's MS related and not FTY720 related as being a side effect.

Swollen lymph-nodes are 'back to normal' and my sugar level seems to be more stable after changing my food consumption pattern. No more sugar rich food and eating more regular (4-5 times/day) in smaller portions. To loose the extra weight I've gained I must undergo the 'hungry belly'-feeling...Sporting is no option for me since I can barely do 1 mile unless I take the car :)

If you read the side effects of FTY720 being used for (kidney) transplantation, you can read that FTY720 causes you to (possibly) gain weight. If you read the side effects being written in the trial papers, you won't read it. So... why?. I've proved it is the case :/ Your weight is also being measured at the visits. I do believe the irregular sugar level is a side effect of FTY720. Quite bearable but you have to change your feeding pattern to a semi-diabetes person or at least watch closely. Unfortunately the FTY720 research Doc thinks otherwise since she believes it has got nothing to do with FTY720 but more me being more susceptible to get diabetes because of my father. I disagree. Of course it's bad for a drug manufacturer to have side effects for a specific drug but in this case, if it works, any side effect is better then the brain/spine detoriation that MS causes. At least mention it...

14-04-2007:
Today I have some extra delay in my eyes. You know those effects on TV with a tail behind something when it moves? Well I don't have to use any external effect! I have it build in ;).

I already have, for some time now, a drop in my frame rate. It usually happens when I come just out of bed or when I am really tired and also when the ambient light is really dark. It's just like an old movie where you see flickering images. Fortunately during day time I don't have it.

08-04-2007:
Less pleasant surprise today...

During our annual Easter brunch at my parents place, I wanted to measure my blood sugar levels. My father has diabetes mellitus (type 2). So he has a blood sugar level meter :). I measured my level and...wow 10.6 mmol/L! Being used to some extremes but still this was too high. I remember from my first Solumedrol iv dose that my blood sugar also rose to 14 mmol/L. Solumedrol is a powerful immunosuppressant. It could be the case that FTY720 (also a immunosuppressant) is causing this. I usually don't have any problems with my blood sugar levels! So I decided to take home my fathers 'old' AccuTrend sensor meter with enough strips for the coming days. These are the results for today: Fortunately I have an appointment with my Doc coming Tuesday.

As for the head ache from yesterday: I woke up with it... and when writing this I still have it. Rather faint but it's there. My left lymph nodes are still swollen.

07-04-2007:
Something strange today, besides the now 'normal' spasm activity :( (4-10/day), a peculiar head ache. Just the left side around my temple and radiating towards the back of my head and downwards to my left lymph nodes in my neck. Nothing on the right side. Also when I bend over, standing with my hands near my toes, the pain increases. Thus it seems to be blood pressure related as well.

Yesterday, during playing hours, I discovered the pain around my left lymph nodes in my neck for the first time (I was being strangled :)). This could be the lymphocytes retrieving towards the lymph nodes as FTY720 should do or I have some illness not yet defined. I hope the first :)

29-03-2007:
Spasm fest today :( 6 or 7 I lost count...

I really hope my body is still regenerating....sigh...

27-03-2007:
More spasms :( They usually have a frequency of 1/day. Today already 3 and it's not yet time to go to sleep.

I know this drug only prohibits the number of T-cells in my bloodstream and just slows down the deterioration in my brain/spine. I'm a volunteering lymphopenia sufferer :)

Good news today: 'We', MS-patients, have a normal immune system compared to healthy persons. This suggests something else is the cause of MS. Since quite some time there are 2 camps: autoimmune and viral being the cause for MS. The finding of Richard Verbeek (Dutch text) causes to lean stronger to the viral theory.

I have the feeling researchers should look not just what happens inside the brain (Blood Brain Barrier as the border) but what leaks OUT of the brain through the BBB.