A.S. Face 1215: Marcin Dlugolecki

Face 1215 Martin IMG_0956 IMG_0984

My name is Marcin (Martin) Dlugolecki born in 1976. I’m from Warsaw, Poland and I have ankylosing sponylities.

 

Since my childhood I was a very active young boy. At age six a joined a Folk Dance Group, attended to a sport school, so I was moving all the time. After I have finished high school, I went to The Academy Of Psychical Education and got Master Degree in TOURISM on 2000. As Poland was only  10 years after political and economic changes, I decided not to continue my sports career but choose to go to work and earn some money in Tourism. But it was sport that open myself into business area. I started to work for multinational company in very niche sector. Now, I’m in management board of a company listed on Warsaw Stock Exchange.  I was not doing pro from 2000, but continue my activity on regular basics as an amateur. I played Ice Hockey, Basketball, Voleyball, Football (soccer), and even heavy lifting (http://www.youtube.com/watch?v=W2SzwdqxWYk) J and compensate my working stress through sport.

 

At 2008 (33yrs) I felt healthy as never before, the future was wide open. Then something happened…

 

Together with friends I have visited Egipt, and during that holiday there I got Traveler Diarrhea http://en.wikipedia.org/wiki/Traveler%27s_diarrhea. I felt terrible for two days, very high fever and muscle and joint pain that I’ve never felt before. When I came back to Poland I started to have problems with my stomach, and decided to gastroscopic. After all a Helicobacter Priori bateria was found and I took a lot of antibiotics to fight with it.  Few weeks later, spring 2009 while walking with my son I started to feel pain in my left buttock going down toward foot. Within 20 minutes I was almost paralysed in that area. Pain was at scale 10. I needed to travel back with my car, and could not go out the car not mention about stairs to my bedroom. This was the unforgeable night. Every single move was killing me. As I was taking medicines for Stomach couldn’t take painkillers. I just took few pills and went to my first contact doc, and she gave me two ketoprofenum shots in my buttock. It was two days before I was about to flight to Tenerife with my family. Hopefully it helped we have our holidays as planned. Since that accident pain was my day bay day mate. It was traveling around my pelvis, legs, backs at the beginning for the first few months I tolerate it, as I was sure it was my age, maybe my office live on the desk or in the car. Anyway, as my education was biology driven, I knew that there is something wrong and wanted to find cause. First, because of my sport endurance, I visited orthopaedics and did MRI, and RTG of my lower back. Every think looks perfect, “you are victim of modern society”, “you train too much and your body is telling you to stop” “you have to evaluate your current life and put changes, your’e not that young anymore”  I decided to stop my sport activity for some time, and you can imagine what happened. Pain was getting stronger. I have visited also a neurologist to find out if my nerves are ok at my spine, it was ok, “you have perfect spine” she said and of course “you do not look sick. If no ortho and neuro then what?  I decided to check my kidneys and started to do blood tests, because I started to feel tired I realised that I may have some inflammation inside and tested my blood to CRP and ESR. The results showed that it was many times higher than norm. Kidneys were ok, and live goes on. Within two years I have visited 4 well know orthopaedics, every time they gave me NSAiD, for a two weeks therapy, not longer. So from time to time I felt better, but it was getting worst when I stopped my sport activity. I ran into a never ending loopo. I started to become tiered at work, I felt like I was absent for reality around me. My co workers and family did not recognise me, I felt like outsider who do not care about work, wife, son. As I was not able to sport activity because of sport, and could not compensate my stress through sport I get depression. Good that I work in a family company, and I was not fired. At the end of going down, pain was getting worse, I had moment that I slept on the floor for two weeks, but it was not a rest at all. Finally I went to rheumy, she did blood tests for arthritis markers and it was (-), “ You have no arthritis” gave me NSDaI….. I was desperate, decided to visit last orthopaedics, he took a look at RTG, blood tests and said you are fine, you may feel pain as one of your leg is shorter (SIC!) You are seems to worry too much, it might be somatic issue, go to Psychiatrists he shall help you.  So I did, feeling like a half a man, I went to  Psychiatrists, told him my story. He suspend that it can be somatic, but I felt good having opportunity to talk about all my struggles to a stranger. He gave me pills to relax (Escitalopramum), and to reduce my muscle tension. It was November 2012. My surprise was huge, when I started to feel better. It was like somebody open a window in a very dark room. I could sleep all night, I was smiling again and had willing to live my life. Achieving that level of conscience, I decided to finally check all symptoms I had with blood test inflammation markers, depression and joints pain, as pain is always a symptom of disease. With an open mind I was able to match all elements which are obvious now. I suspected tree possible diseases:

 

1.      Psoriatic_arthritis

2.      Ankylosing Spondylities

3.      Dermatomyositis

March 2013 I have visited new rheumy in hospital directly, he checked my RTG, he saw calcification in SI joints, did blood tests again (High ESR, CRP), Did Rome Process, and Norwegian Process and diagnosed AS. I finally knew what is going on and what can I do to fight with it.  For additional test I was put for a week into a hospital and did all blood test again with HLA B27 positive, new RTG ( confirmed Level 2 fusion in SI joints). According to Polish procedures if your stomach is ok, you start with NSAiD, for 6 months, and change drug after each 3 months. I was prescribed Ketoprofenum, and change it after 3 month, and check my blood regularly. I’m still on NSAiD,, came back to sport activity but with lower intensity and convert to Yoga and stretching. I still play basketball two times per week, and run 5-10 km few times per month. I’m ok with work right now. Anyway I pay the prize with fatigue, and fell very tired every day after 6-7 pm. As long as I’m keep moving I feel better.

My rheumy said that we may go for biologics this year, but I still reconsider pros and cons.

I know my enemy and I control my disease. From time to time I’m in opposition but having family and friends  who understands I can easily go back to right track. I also spread awareness every way I can, explaining to people what AS is, and why I’m different that I used to be. There are some arthritis association in Poland and I’m going to join them and help with awareness and other activities.

I’m also thankful for all persons like you, Cookie to have a time and sources to run such amazing forum and gather such society.

Once again greetings from Warsaw, Poland, Europe

Marcin D³ugo³êcki


5 Responses to “A.S. Face 1215: Marcin Dlugolecki”

  1. Dear Marcin,
    Thank you so much for sharing your story with us.
    Sincerely Cookie

  2. thank you for your story. don’t you want to go to every doctor that said you were fine and tell them about AS? It is so frustrating how hard it is to get diagnosed. best of luck

  3. Thank you so much for sharing your story. I am a nursing student and came across this term in my text book and decides to look more into it. Thank you so much for fighting. I pray for more strength for you. I have also been in position where doctors disregard the patients feeling/pain. It got to a point where I started asking myself that was I imagining the pain? A person/patient is always right and you would know when something is wrong with you. Last year I kept having this stomach ache and there was nothing that could be done to it. The doctor told me to stop doing sit-ups as this could be the cause which was nt because I still felt it afterwards.I went to a different doctor and still they found nothing. I stopped experiencing the pain but no one was able to tell me exactly what was happening to my body. I am 21 and when I had the pain I could not concentrate on Sch, was always in a bad mood and cared about nothing. I pray and hope it does not come back as it last as long as two week. I always promised myself that when I graduate I would always be my patients advocate.

    God bless.

  4. Marcin, it was great to speak with you on Skype this morning (evening for you). I think you have the right attitude about your disease. Sounds like you went through the ringer just to get diagnosed. I was lucky because my diagnosis process was only 6 months long. Lets help make the future better for those with AS and arthritis. I’ll see you to do just that in Europe during the summer of 2015. Good luck on your 10k road race on April 13th.
    http://www.helgiolafson.org

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