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Anja

Active member
Joined
Mar 24, 2012
Messages
91
Diagnosis
06/2012
Country
NL
State
zh
City
The Hague
Hi there,

Short post because i can only type with 1 hand, my left hand is paralysed. My name is Anja and i am in the diagnoses process. 8 months ago i had and still have a dropfoot, since 1 week ago my left hand stopped doing what it's supposed to do. Lost lots of (muscle)weight. Used to be a sports (running, biking, swimming) all in past now. Already had lots of exams focussed on obstructions. EMG's show nerve & muscle weakness in right leg and foot and waiting for emg for hand. No obsytructions found, bye bye "nice"causes, it seems to be more serious :roll:

I have stiff back it hurts lots, hand hurts because of spastic paralysis

It's scary. I will be examined at university hospital soon. Keeping heads up, hoping it will not be ALS. Enjoying present moment as much as possible, am positive minded person. Found this forum and if it is ALS I'm blessed with this supportive place, and will support back.

Fears now i'll lose my other hand too, but do my best to focus on health :roll: :wink:

Enough 4 now,tired, thanks 4 reading!

Anja
 
Hi Anja. The Netherlands is one of my favourite places. I've been Amsterdam several times, to Rotterdam once and once to the Hague!

I'm so sorry you're going through this. The only advice I can offer for now (and it seems you're doing this already), is focus on what you can do and try not to look too far in to the future. If it turns out that you have ALS, educate yourself as much as possible and get in touch with your closest ALS Society and Clinic so they're there to guide you along the way, with medical issues as well as physical needs. Take care. Yasmin
 
Welcome Anja. I hope it's not ALS but if it is we are here for you. You can read, rant or rave. We can be serious or funny and sometimes wacky. We are Living with ALS.
 
Welcome Anja, hoping you won't need to stay here, but you're always welcome anyway! Sounds like you have the right attitude already, be sure to keep thinking positive. Everyone has different progression rates, and there's so many different stories here. There's lots of different threads to read, educate yourself, rant, whine, and oh yes, come for tea -- my favorite now that I've been on all the others and learned as much as I can... still learning from all these good folks, our forum family.
Helen
 
@Yasmin Cool you have been in my country :lol: I was born in Rotterdam, you have good taste ;) And yes I focus on what i can do! Never thought i would be so happy being able doing the dishes with 1 hand hehehe, i focus on being as creative as possible and to stay active as long as possible, 1 day at a time! the clinic i go to soon has an ALS centre. Tnx 4 the welcome!

@Becky Thank you, it sounds like a good place and hopefully i won't need it but if so i feel "luckey" i found it!

@Helen: Thanks! I love the attitude on this forum, down to earth but also warm & supportive, I do my best not to panic about the outcome, all i know 4 now is that it is serious anyway and meanwhile i enjoy all small things in life. Going through this makes me mindful does that sound strange? But i can rant & whine too ;) be prepared ;)

Anja
 
I pray that it's something treatable and non life threatening. You seem like a well adjusted and sweet person based on what you've written here and on another thread. I'm sending warm and healthy thoughts your way. Welcome to the forum! :)
 
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Hi Anja, I hope you get all the testing done soon and can know the diagnosis for sure. I pray it will not be ALS, but if it is we are here for you to hellp you on your new journey. Keep us posted as how you are doing. {{HUG}}
 
@Ms. Pie Ty so much gratefully accepted! Whatever the outcome will be i hope i can be of support here. I have serious signs of ALS but there may be other causes & i hope it will be anything but ALS and it would be awesome if it were treatable. Hehe i asked my neurologist after nothing was found on mri if i should be evaluated by a psych or so, but he didn't think it was needed 4 me :( i wish it was because then some good counseling would cure the issues!

@notgivnup Ty too 4 the supportive message. My neuro is going to call yhe clinic tomorrow & try to get me checked asap bcause of new situation with left hand he is concerned, but will wait 4 diagnose and so will i, at least i try to do so :) (((hugs back ur way)))

Anja
 
Anja, You are in my prayers. Please keep us posted on your appointment. You have come to the right place for support!
God Bless!
 
@KissJ Thank you, i feel nervous, hope i will hear back from neuro or clinic soon & hopefully don't have to wait for months or so (which happens here too much!)
 
Welcome to the forums. I hope your appointments will all go smoothly and help you get some answers. The waiting is so hard.

I have fond memories of a trip I made to your country with my mom in the late 70's. Keukenhof was gorgeous of course, and Madurodamn was fun. Amsterdam and the Ann Frank House were memorable too. We got to visit quite a few tourist attractions.
Even the bus ride between sites was a pleasure. Loved the short lace curtains in the windows and I managed to find some for my windows once we returned to Germany. Filet lace with windmills and apple trees.
 
@momap53 Thank you, i hope for the same, i've practised patience for over 8 months from mri to emg to bloodtests & vice versa, i didn't bother much because i thought it would be something innoncent, nothing to worry about. But now that it seems to be something serious I want help asap! I guess that's normal ;)

Sounds like you had a wonderful time in my country! I live close to Madurodam and sometimes i go there, it is a great place! The Keukenhof is an amazing flower paradise. I went to the Anne Frank house when i was a child, it was impressing!
 
Seem very strange that you have already had an EMG within the last 8 months and it's being repeated! What was the result of the first one? Don't worry, even a very extensive EMG will not take 2 hours!

I too have stayed at the Hague, den hauge, I think it was called in Dutch.Been to Madurodam as well. What is your favourite part?
 
@Alyoop: At first nobody was worried, it was 'just' a dropfoot/foot drop, and i was tested over and over again to see if there was any progress. There wasn't, it's gotten worse. It is very normal they do this when they focuss on obstructions of any kind, especially when no improvement takes place. The emg i'll get i already told you. It's what they do, it's in the letter i got from the university hospital & including 30 miinutes warming up in warm water. It's the way they do it here, don't ask me why, I have no idea.

It's 9 months now, grrrr

The Hague in Dutch is Den Haag, my favorite part of my city is Scheveningen, where the beach is and a big boulevard, I love that place!
 
and in Madurodam i love the waters where tourists throw coins in ;)
 
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