Highly likely als

[Caroline77]

Hi, this is difficult to write.

Our whole world fell apart yesterday at the visit at the neurologist.

(Sorry for The not so good english as we live in Sweden.)

We went to the neurologist yesterday and there was a also a psychologist present.

The doctor said that its higly likely that my husband has als.

Though all criterias not quite forfilled but she said there is no other option.

We got refered to a als center 4 dec. I guess they Will test further.

Can you help me with tips? .

How do we cope with this? We are panicking. We are devestaded

We have 4 children age 6-12 and no support around us.

Best wishes Caroline

 

[Nikki J]

Welcome and we are sorry for the worry that brings you here

I have moved this thread as your husband is not currently diagnosed. We hope he will ne ver be of course!

There are stickies labeled important posts near the top of this subforum and the general discussion subforum on getting a diagnosis and on second opinions. You should find them helpful although some things will work differently in Sweden.

The diagnosis of ALS involves many tests as there are a number of mimics. Not knowing how much has been done or what symptoms he has I don’t know how much hope there is that this neurologist is wrong.

It is most devastating news and of course you are panicking but if the diagnosis is made know there is life afterwards.

We will try to support you now and if need be afterwards

 

[KarenNWendyn]

Sorry to have to welcome you here, but you’ve come to a good place for help and support.

Deep breaths, and take things one day at a time.

You’re doing the right thing getting an evaluation from an ALS center.

Wishing you the best.

 

[Caroline77]

Thank you for your replys. I keep taking deap breaths.

They said that madsam, cipd, MULTIFOCAL MOTOR NEUROPATHY was not a possabillaty because of the emg and Other blood work.

He has fasculations all over and lost all upper muscles. He has a little funktion in arms, but hands cant do Button. Especially when its cold.

Blood brain barrier damage showed at lumbal puncture. (albumin high)

I feel so helpless

Thank you

 

[Nikki J]

I am very sorry. The wait for the neuromuscular opinion is excruciating I know. December 4 is very soon but it must feel like forever.

 

[Bestfriends14]

I'm so sorry you find yourself here and for your husband's potential diagnosis. As Karen says, please take deep breaths and try to keep as busy as you can until the appointment. Two weeks seem far away, but hopefully the time will go by quickly for you so you do not have to go through a too long of a stressful waiting period until meeting with the clinic. Please report back once you have had the appointment, or if you have any questions in the interim. The people here are wonderfully supportive.

Big hugs to you.

 

[Kristina1]

I'm sorry you and your husband find yourselves in this situation. Hang in there, I know it's extremely rough to be where you are right now.

 

[Caroline77]

Thank you for your support. I Will keep you updated. ��