Newly Diagnosed 28M

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Jayarecee

New member
Joined
Dec 6, 2020
Messages
2
Reason
PALS
Diagnosis
12/2020
Country
PH
State
MM
City
Makati
Hi everyone I just got diagnosed with MND while I was visiting my family back home due to corona. I have a few questions (sorry if I'm rambling / posting this somewhere it isn't supposed to be)

1. I live in a 3rd world country so we don't have any true MND/ALS specialists. I'm seeing a neuromuscular specialist at the moment. Will having no access to drugs have a major effect on progress? (They're not available here)

2. I have bulbar onset so I can still use my arms fairly well, legs at around 70% is working out recommended? I feel like I wanna run until I can't because I don't know when I'll be able to use my legs fully again.

3. I'm a resident of the Netherlands (Educated Migrant) but my immediate family is not there. Would it be better to move there since healthcare is cheaper and maybe the treatments will better. (?) I have my long time partner there but we're still digesting the diagnosis. Part of me doesn't wanna be a burden on her and she's all I have in the Netherlands but here at home my entire clan of cousins and aunts and uncles and siblings will be willing to help (cultural thing I guess).

Any advice or opinions would be great.

Thanks
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
9,857
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
I am sorry that this has happened to you.

There are several complicated issues here

where should you live? Well returning to the Netherlands would allow you to access a true ALS specialist and get a second opinion which you desperately need. Bulbar ALS is very very rare at your age and if you were in the US we would say you need 2 opinions from ALS specialists before accepting the diagnosis. from your report you would probably get better medical care and you would be in your own home with your partner.

on the other hand having a large family to help you is no small thing. If you do have ALS you will need a lot of help and it is hard though not impossible for one person. does your partner have a job/ career? Does she have children? This sounds harsh but you need to consider the possibility that the relationship might not survive the stress

the usual advice for exercise is that if you do not fully recover in one hour ( so you could do the exercise again without difficulty) it is too much.
 

Jayarecee

New member
Joined
Dec 6, 2020
Messages
2
Reason
PALS
Diagnosis
12/2020
Country
PH
State
MM
City
Makati
Thanks.

Yes it's quite a tricky situation. My partner has a job, we have an apartment and no children. I don't speak dutch at all though (used to work for a multinational). Completely understand the high likelihood of the relationship not surviving.

Have a flight to the Netherlands in January. I'll definitely look into getting a 2nd opinion when I'm there if my symptoms don't progress extremely fast.
 
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