Hi, new here

luvmyhubby · 09-24-2009, 01:02 PM

trying hard to get a handle on what's going on. A little background, my hubby is dealing with some major problems. He joined you all a while back, I joined secretly to have other s to tallk to, but he's always on here and I don't get much time.

DH has been steadily losing weight and muscle mass, twitches all the time, has horrific cramps in legs and hands and is just becoming a mere shadow of his former self. We a re painfully waiting for an appointment to be set up with a neuro. My question is how do you all get through the agonizing wait for appointments?

My hubby is convinced it's ALS and I'm trying to remain calm and reassure him it could definately be many other things.

Thanks for listening and my prayers are with all of you dealing with this.

Blackpool · 09-24-2009, 01:57 PM

Hi and welcome to the forum, I hope you can visit us often, it is one of the hardest things waiting and you are so right it could be anything,I hope you get a dx soon., when is your neuro appointment.

luvmyhubby · 09-24-2009, 03:06 PM

still waiting, referring doc just finally sent records. Hopefully soon!

sadiemae · 09-24-2009, 09:42 PM

we went straight to emergency room. they took great care of us, made the dx, set us up with als clinic, and als of nevada. we had no insurance, but they treated us like we were bill gates.

Blackpool · 09-24-2009, 10:57 PM

Hi I did the same thing and went to the emergency after going to my GP for six weeks, I got great care.

SandraD · 09-24-2009, 11:13 PM

Hi luvmyhubby,

sorry you and your husband are going through this. I do not have a diagnosis, but when things first started for me in the spring and I was faced with a two month wait for a neuro appt., the awesome nurse at the neurology dept of a university teaching hospital actually suggested I just go in through the ER. she even told me what day to go so I would see the best neuro. she said if the situation warranted, they would admit me and do the EMG and other tests right then and there. I chose not to go that route, because while scary to me, it did not seem like an emergency. but if things are really that bad, this is certainly an avenue to take. I would recommend, however, you choose a hospital known to have a good neurology dept.

Good luck--

Sandra

Zaphoon · 09-24-2009, 11:46 PM

hey there luvy,

A good thing to do is to put your name on a list to fill any cancellations the neuro might have. This may get you in sooner.

As far as what to do in the meantime, how about researching other possibilities in the way of a plausible diagnosis? There are many disorders, diseases and syndromes that must be ruled out before a diagnosis of ALS can be given so why not focus on all of the other possibilities?

You can make a game out of it! Place bets on what you think it could possibly be outside of ALS and have your husband do the same. Winner takes all!

Now, what I would really suggest is to get your minds off of the illness (whatever it may be) and go fishing, read poetry, see some good movies, listen to some good comedy, good music, what ever it takes (I like to play checkers - I cheat, too!).

The process of getting a diagnosis can be long and laborious. No matter what the outcome of the process, life goes on. We just make the best of it in whatever condition we happen to find ourselves. Right?

Zaphoon

Five · 09-25-2009, 05:24 AM

Hi, I am new to the forum too. I have spent the last month doing the round of specialists and tests with my mum looking for a diagnosis, although we have it now and it brings its own set of challenges, that time waiting in limbo, when you really don't want to be making any plans or decisions because you don't know what your dealing with is a really tough time. I agree with Zaphoon, whatever activities you enjoy will distract you... my mum and I did a lot of redecorating!

All the very best to you.

luvmyhubby · 09-25-2009, 12:02 PM

Thank you all so much for your ideas and encouragement. A family member also recommended the ER, but my hubby dosn't feel its that urgent either, but the good news is neuro office called today to say the doc has him on her cancellation list so we are waiting. They assured me we will get first available.

I am very glad we found you all, I hope I get more time to come and visit!

paleshia · 09-27-2009, 02:29 AM

my GP called personally and got me in to see the neuro in 5 days.

mydog · 09-27-2009, 08:40 AM

Hi, I understand your anxiety. Getting a diagnosis is not always a quick thing. First they put you through a whole load of tests to rule out a whole load of things, at least that is what they do in the UK, so you may go to see the neuro a few times before they can say what the problem is. BTW, this is not meant to be negative. However, every one is an individual, and courses of the disease varies enormously. You may get an answer straight away, but dont rely on it.

jclark173 · 10-01-2009, 01:01 PM

Hi, I am new here as well. 32 year old female with odd symptoms, thought was carpal tunnel had a EMG with NCS on right hand ( doc thought carpal tunnel too because of thenar muscle wasting) back in February, came back normal. He had me scared when he started talking about muscle wasting, so i did the worst thing in the world by googling muscle wasting on the internet. Sent me for a MRI 2 months ago, again normal. I see a neurologist in 5 weeks i cant sleep i cant eat i have 2 kids and a husband they have no ideas of my worries. You all seem so supporitive of each other. Thanks for listening
Jacki

maryam_rastkar · 10-01-2009, 01:32 PM

hi everyone
my name is Maryam and my father's got ALS desease.
there is no cure? i am ruined.
it's 2 years that he has this problem
his muscles've become very weak.
he is a very proud man and he doesnt want to talk about his desease
so that i dont know very much about it
i wonder if its progress is this much fast in everyone?
-175cm height,49kg weight-
he's got breathing, swalloing and sleeping problems-4hrs a day-

i will be very thankful if anyone could give me some advice-any useful diet?sport? ...-

joelc · 10-01-2009, 01:40 PM

I am very sorry about your dad. Everyones progression is different, there is no way to tell the time frame for what might happen next.
A lot of people who don't want to talk about the disease have agreed to look at my website and found answers there. Maybe you can convince him to look at it? There maybe some answers for you there as well.

LifeWithALS.com

maryam_rastkar · 10-02-2009, 06:08 AM

hi joel

i visited your website and
i convinced him to look at it as well

that was very kind of you
thank you very much for your help