An intermediate of all symptoms
Yesterday I had my meeting with the haematologist to go through the results of the blood test. To get straight to the point: all values look great and fall within healthy margins, super good news of course! Does this mean that I can consider myself a 'healthy person' again? No, unfortunately that is too premature, the haematologist indicated that the immune system will need about 6 months to fully recover. However, it can be concluded from these results that the risk of complications has become much smaller and that the greatest risk at present is viral infections. It is still recommended to avoid raw food (vegetables, fruit, nuts, meat, fish) as much as possible, so in essence I will just continue on the same tour for the time being to spare my immune system as much as possible 🙂
When I look at how I have felt lately, not much has changed in the past week. I feel really good, but some days I feel quite tired. This is just as expected. This recovery period will be accompanied by quite a bit of fatigue. My body has of course been able to catch quite a few hits from the chemo and has also been pumped full of medication for a month.
In addition to the medical side, I also wanted to give you this update some insight into all the positive developments that I have experienced in the field of the symptoms of my MS. As mentioned before I want to be positive cautiously about this, at the moment it is not yet possible to say with certainty whether all these improvements are just a short recovery (mainly due to the corticosteroids), or really long recovery. The aim of the treatment is of course to stop the progression of the disease, all recovery is bonus. Some experience this more than others and some people experience no recovery at all. So please keep in mind that these are by no means guarantees and that a statement can only be made objectively in about 6 months. Nevertheless, I am already very happy with this at the moment, and I fully enjoy it! To give you a little insight into the problems I had and how it stands now, I have made a list below of the symptoms that I suffer from, how I experienced this before the treatment (and how much this limited me). and how it currently stands:
Mobility: shortly before my treatment I could walk a maximum of 300 meters before I had to rest. I could walk a little further, but this was a strange sensation. This felt as if I was 'not walking on my own two feet' and could not control them properly, I started to drift a lot and compensate with my posture, which also caused a lot of pain in my lower back. The past few weeks I have walked almost every day with my father (of course well packed with a mouth mask and all ... I am also happy to see that the few we meet outside keep a proper distance and walk around me. walking started with laps of about 1 kilometer. This has been expanded in the past few weeks and the last 2 days I have already walked laps of 2,8 kilometers! In the beginning father also took the wheelchair with him every time, just to be sure. However, I did not have to use this and now we just leave it at home! Although my legs get tired when we are just over halfway, I can still walk normally, I just go for a walk a bit more. It is expected that this will also have to be built up considerably, of course I had practically no movement during my treatment last month and in the previous year I did not walk very much due to m he limited 'range'.
Eye problems: My MS also caused many eye problems, such as vibrations in my vision (almost always present, very tiring) and double vision, especially at close range, such as looking at my phone. Since the treatment I have never suffered from double vision and the vibrations in my sight seem to have almost completely disappeared!
Dizziness: One of the most annoying symptoms I have to deal with my MS is vertigo. These started up after relatively light physical effort with bending over, getting up and some light twists and made me feel rotten for hours when these came up. I also had occasionally that the room was spinning when I woke up, as if I woke up in a fairground attraction, not really pleasant ... Since my treatment I have hardly suffered from dizziness.
Deaf fingers: My thumb, forefinger and middle finger of my right hand always felt as if they were sleeping and I had very little feeling about this. Since my treatment, the feeling has largely returned and they no longer feel as if they are sleeping.
brain fog: A common problem in MS is the so-called 'brain fog'. This is a constant noise on your thoughts and also makes concentration very difficult. The noise has disappeared for the time being and the concentration also seems to have been partially restored!
There were also some other problems such as problems with urination, electric pulses that pulled down my leg and some other small things and these problems have also been greatly reduced or disappeared.
Again, it is too early to say with any certainty whether these problems have really disappeared or are currently only suppressed by daily drug infusions for a month, but anyway I am very happy with them right now! At no point during the past 7 years during my period of MS have these symptoms completely disappeared (or gotten so much less), so in that respect this is truly a relief!
Until the next update again!
Greetings, Stephan
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How wonderful all of them! Of course we are cautiously optimistic, but what you already indicated yourself: enjoy this period!
And walk 3 kilometers! That is already 10 times as much!
We are very happy and we keep it that way.
XXXXX
I understand your reserve. Yet you have more than enough reasons to be (and stay!) Generous positive.
Super nice reports about this progress towards recovery. Proud of you!
Hi Stephen,
I am delighted to hear the news. What a blessing
for you. It certainly has been a roller coaster ride,
but what a impressive journey it has been. Best
Wishes, and much continued future success!!
Now you can relax, and catch your dreams. Tanti
Nice to read that you are doing so well and that you are making a lot of progress in walking. You also look good. I already heard a few things from your mother. I wish you well in your recovery and be careful when you go outside.
Dear greetings
Wendy van Bochove
What a beautiful messages Stephan in these strange times. Super happy for you and also for your parents. Realize that you have just received the treatment in time. Russia is now locked because of Corona. You are more than granted that happiness.
Regards,
How wonderful to hear Stephan, you are the good news among all the bad news in this day and age for everyone reading this!
Super man !! Great news!!
Continue positively, s6 .❤
Get well soon hug from Ed and Marjon.
Hello Stephan
Great these positive messages, hold on to them!
We wish you and your parents a lot of strength,
in this difficult time.
Regards
Henk and Bep de Jong
Dear Stephan,
Nice steps that in any case feed hope. Much strength in the coming period with hopefully perpetuating the results so far and expanding them… .. and… .. of course staying under the radar of the current corona virus!
Lex & Anne
Hi Stephen,
What wonderful news for you. I am happy for you also make for your dear father. This gives the citizen courage.
Sincerely,
Justin French
Hello Cousin,
Nice to hear how you are doing now. Obviously, but it does sound positive.
I sympathize with you from a distance and hope that the improvements will be permanent. Keep your spirit up!
Love from a sunny Nijmegen, Mireille
Good morning dear Stephan,
How wonderful to read that you are progressing and it is nice to follow the updates and see that it is going in the right direction and it will certainly be all right, you are a whopper !!
Lots of love and a lot of
Henk and Lenie Bezuijen
How fantastic to read, great that you are doing better again! Keep hope that the recovery will be permanent. Greetings, strength from Eric and Geertje
Hi Stephan,
Good to read that it is going well! Hopefully it continues! Nice update!
Regards,
Adam
Dear Stephan. We are happy that things are going a lot better for you and we hope that it continues like this. We wish you much strength and courage. We'll keep our fingers crossed. Greetings Peter and A3 Henny.
Thank you for the kind words!