Is this ALS?

[lbas412]

Hi guys, I'm wondering if this could be ALS. My symptoms have been starting to worry me.

I've had difficulty swallowing since I was a kid. I'm 22 now and have noticed that my swallowing difficulty has become much worse. Every time I eat I must have a glass of water at all times to drink with my food so it breaks it down easier, but even then its become extremely difficult at times. Also , for the first time ever, i've had difficulty swallowing liquids and this has never been an issue for me before.
I also have been twitching pretty much everywhere. Mostly happens in my legs, and this goes on all day long. If my legs aren't twitching my arm muscles are, or my neck, or my stomach, back, everywhere. Again this happens a lot, every few minutes, seconds, it varies, all day and night.
Whats been starting to worry me is the tongue twitching. This started about 2 months ago. It twitches at the tip. Mainly on the right side. It goes on for hours at a time, and has been happening every single day since the first time I noticed it. Sometimes if I bend it or squinch it kind of, it twitches more, very rapidly.
And another thing, I'm not sure if i'm using the medical term "weakness " correctly but I do tend to feel this weakness in terms of my whole body feeling this shaky weakness in a way, like this vibrating sensation almost. It makes me feel likeI have no energy in my extremities. I have trouble breathing when this happens. And the last symptom i've noticed is occasionally I will feel like my legs are being weighed down. Like I weigh an extra hundred pounds, or I have really heavy boots on. I have an appointment with a neurologist next week. What should I expect?
Any feedback would be great,
thanks

 

[ottawa girl]

I realize you are nervous, pending your appointment. What should you expect? You should expect answers. I would urge you to record your symptoms, chronologically. Do not embellish. Make it bullet format so neuro can scan quickly. Listen (and hear) to everything you are told. Have a list of questions ready.

As an aside, and I'm no doctor, but your symptoms are nothing like ALS - and I strongly recommend you NOT mention ALS to the neuro. This can lead to you being perceived as anxious, and other things may be overlooked on that basis.

 

[Cricket]

Bring a friend with you to your appt so that they can take notes. It is easy to forget or miss a few things cuz of nervousness. You might like to go over those notes and talk to your friend after.

 

[affected]

great advice has already been given but I would like to say why:
my PALS had been having worsening symptoms for over 6 months and we were being sent from one specialist to another, (none of them neurologists) and as his speech was deteriorating and the story was getting longer I suggested we sit down and put it all in writing.
It took a couple of hours, but it was so useful as we could put everything chronologically and get it all straight.
Doctors were really appreciative of it too and with some we would email it to them before our appointment.

Finally a friend suggested we see a speech pathologis, and within 5 minutes of hearing him speak, watching his throat and reading half the written history she said I'm no doctor and cannot diagnose but I believe this is MND. I was gutted, but my PALS was relieved as we had been getting nowhere. She was so great and organised appointments for us with Neurologist and MND clinic, really took care of us.
We add to this history every couple of weeks, and when we went to the MND clinic for assessment it again made the diagnosis so easy for him. Reading the way the symptoms had progressed on a time scale and examining him was a snap compared to trying to tell things in order.

I always attend appointments with my PALS because I want to, but also because it is great to have 2 people hearing everything and being able to discuss it later.

So do take the advice to write out a timeline of your symptoms and progression and take someone with you.

The other thing we did when we went to the clinic was we wrote out a page with 16 questions on it, and handed it to them. The doctor was very respectful and at the end of all he wanted to do with us, he sat down and answered every single one of them. I know we would have forgotten or kind of backed out of asking heaps of them had we not had them all down on paper and handed it over at the start.