Mom needs help.

[Milaea28]

My mother was diagnosed 3 weeks ago. We finally got a call back from John Hopkins for a second opinion. Her appointment is not for 2 months. We knew we would have a wait awhile but 2 months is a long time. We just don't know what to do while we wait. We know we need to starting doing something just need help with what will help. She started showing symptoms back in December. She is weak in her left arm and leg. Has trouble with excessive Saliva. Always feels tired. We expected a stroke so had an MRI and that's when they sent her to a neurologist were they did a nerve test and came bk with ALS. Everywhere I have looked said there is a lot more tests to do so we are really questioning things. We know ALS sounds right and are trying to coming to terms with it. Just don't understand the lack of test. The first doctor also told her see you in two months after he told her it was als. My sister had to ask for meds otherwise he would not have given her that. She only lost about 10 pounds so far but I think a lot of that has to do with depression and not wanting to eat. She now makes herself eat and has added a boost stake once a day. Any help would be great. Thanks

 

[soonerwife]

So sorry to hear about your mom's dx. It's alot to take in. You have resource in this forum.

My husband had a mri of the brain. Tons of blood work and then an emg. The blood work and the mri were tests to rule out other things. Maybe they will do them at the second opinion.

How old is your mom? Is she having trouble walking? Does she have drop foot?

 

[Jhill]

Sorry to hear about your Mom.

I'm wondering if your local ALS Association could help you out while you're waiting.

Joan

 

[Firefighter58]

Hello Milaea28, so very sorry to meet you here but nothing we can do about it, Right now I think all you and your mom can do is try to live life normally, I know that it is hard to do but we have all been there and although it is hard to accept there is nothing we can do about it, and once you start to live a life as normal as possible all things will become easier, please believe me I know, I am there.
Al

 

[Nikki J]

If there are further tests to be done Hopkins will do them. I know 2 months is a long time but sadly not unusual

For now maintaining weight is very important and it sounds as if she is addressing that. She is not having trouble swallowing that you know of?

Preventing falls is crucial too. Does she perhaps need a rollator?

Was her breathing tested? There are handheld devices that clinics use but a regular neurologist likely does not have one in the office. If she is losing more weight than you think she should or if she has morning headaches you might try to get pulmonary function tests ordered by the neuro or her primary doctor while you wait to go to Hopkins

Please, if you have not already, have a look at the sticky posts at the top of the first subforum General Discussion. There is one on perparing for a second opinion and others that might interest you. Don't try to read all of them now though. You would get overloaded!