Hello everybody, my name is Mads, I’m a 22 year old guy from Denmark with CIDP(diagnosed last year in march) Im recieving intraveneous treatment every 8 weeks at the moment, and symptoms are mostly fine except for the last week or so before a new treatment. Id say Im well off, mentally I struggle a bit here and there though, but all is good. I was looking around for communities discussing my disease and others similar, mostly out of curiosity and to hear how other people have been dealing. Im particularly interested in any danish or scandinavian people with the same diagnose, although Id gladly converse with anyone on the subject or anything else for that matter. If any of you are musicians id love to know how you have been dealing with it, and if you still play.
Hope to get to know you all.
Welcome Mads, glad you have joined us! @Xstitcher is a Canadian ex-pat in Denmark.
@fitzp is a drummer, hey Fitz last time we talked you still played?
Thanks for having me. Id love to talk to either of you guys if youre interested. Enjoy your day!
I’m Mary (xstitcher), live in Risskov and like you would be very glad to talk to a Danish person who has a illness similar to mine and received treatment here.
I’m two years out of Gullain Barré and about 90% back to normal. I was completely lame in my legs with very limited use of my arms. I can tell you more at a later date.
I speak and read Danish all time but prefer to write in English as I’m originally from Canada…many, many moons ago! Please just answer på Dansk.
I’m off to fys training now.
Jeg ser frem til at hører fra dig.
Hej Mary, er glad for at høre du klarer dig godt. Får du medicin på neurologisk afdeling i Århus? De er super flinke. Jeg er selv fra Jylland, og fik indtil sidste behandling også medicin
derinde. Dog får jeg ofte migræneanfald sent på behandlingen, dog ikke så slemt længere.
Jeg blev ikke komplet lam, men derimod reduceret til 10% muskelkraft, kan slet ikke forestille mig at være helt lammet, glad for at høre du har det godt i dag. Ingen fortjener at være i så ydmygende og elendig situation, forstå mig ret. Når du nogensinde at få tilbagefald lige inden behandlingen, og i så fald, hvor slemme bliver de? Inden min sidste behandling havde jeg det ret slemt. Til gengæld føles det altid helt fantastisk at være på toppen igen.
Hvad fik en canadier til at flytte til lille Danmark? er spændt på at høre hvad der kan have bragt dig hid!
Held og lykke med din træning, og ikke mindst ønsker jeg dig og din familie en god påske og nogle gode påskefrokoster
Your Moderator, Canadiangirl, sure has some memory, doesn’t she? We’re glad to be able to introduce you to a few members around here. I’m sure we must have a few more members from Denmark, but unfortunately the system, as it works now, doesn’t allow for searching by location. We’d like to add that feature in the future, because often it’s “local knowledge” that people can really benefit from.
It’s always nice to see two members “hit it off” right away. We used to tell people that the language of the community is English, but now with Google Translate being so easy and surprisingly accurate, people can post in whatever language they are comfortable in. Some of our members run their text through the translation tool and then post both, which isn’t really necessary but nice if the post concerns information that might be of interest to a lot of members. (Which yours doesn’t.) The power of the internet’s ability to connect people never ceases to amaze me!
Seenie from the Moderator Support Team (TJ, Meli and Seenie)
I’m so sorry that I didn’t see your answer until right now, but I’m so glad to hear from you.
Now I only have one medicine for GBS which is pramipexol to keep my legs still while I’m falling asleep. I think it’s called “rastløs ben” I should really stop and see if I still need them.
I was in the University Hospital…neuro avd here in Århus…not the Skejby one. First I was in for 3 weeks getting tests and then the 5 plasma treatments. We ran into Easter so I was there longer than I perhaps needed to be. I could walk out with a rullator, quite weak but I was on my feet. After about one and a half months (Pinse lørdag) I had to be admitted again and this time I couldn’t walk at all and my arms were really weak. I couldn’t even hold a hard back book in bed.
This time I was given 9 1/2 bags of plasma back to back and then sent a rehab hotel in Risskov…Vikærgaard. There I stayed for 7 weeks and it was truly a house of miracles. I came in on a stretcher unable to move and walked out with the aid of a rullator. While there I also had extra fysio with a private Therapist courtesy of the Danish state. After that I was granted 10 weeks of fysio as an out patient twice a week and still had my private therapist coming home once a week. I was picked up by a handicap bus in my wheel chair, graduated to my rullator and on my last day walked out alone and climbed onto the bus!
Now I go to fysio twice a week where I drive in my metallic red el scooter.
I still have energy problems but can walk short distances without aid. I can drive into town and do my shopping. At the moment 3 shops are all I can manage before I can feel my batteries running out but I hope that improves. I walk along the beach as much as possible. The more I do the easier it gets. Getting on to an escalator was a big mountain for me. I was so scared but I did it. Don’t let fear keep you back. You’ll know when the time is right.
Please let me know how you’re getting along and I wish you God bedring !!! Mary
Hey Mads, I was first struck down in March of 17’ lost use of legs and after multiple plasmapheresis treatments I could walk again in April, although still weak.
I have had two relapse since and will now be treated for months.
Where were you stricken? Do you takes any mess? I am currently trying cellcept to help control my overactive immune system.
Glad to hear you are do ok otherwise.