Status
Not open for further replies.

Michael80

New member
Joined
Mar 14, 2016
Messages
5
Reason
Learn about ALS
Country
NL
State
NH
City
Amsterdam
I read the sticky, and it did not reassure me, but I am not going to ask you if I have ALS, since I will see the neurologist in two weeks. He will know, hopefully... And that is exactly what my question is about. I have issues with my speech for 4 weeks now and about 3 weeks ago I started to have a problem with my fine motor skills in my right hand. No pain, no twitching, just very annoying. Especially the speech is annoying, I speak like I have had a couple of beers, and I think it is getting worse every day. Since a couple of days I am dizzy, constantly. So, my GP sent me to the neurologist and because he thought he saw fascilations in my tongue he asked him to check if it is ALS. My question is if the time between getting symptoms and a diagnosis can be this short (about 7-8 weeks). I read that it can take months, and I just wonder why. Is that only because of the fact that most people wait to see the doctor? I just hope I am not waiting for a diagnoses for months, that's why I am aksing. And, you probably do not know, but maybe someone has some useful insight for me... Thanks!
 
Hi
It is possible to receive a diagnosis shortly after onset.
The reasons behind diagnostic delay fall into 2 categories. The one the neuromuscular doctors usually say is that there is a long delay from symptom onset to seeing them. The patient waits, then sees their primary medical doctor, who does some tests, possibly orders pt or perhaps refers to a non neurologist like an orthopedic. There is a wait between appointments, then the orthopod may do more tests before saying the patient needs to see a neurologist. The general neurologist does tests and refers to a neuromuscular doctor for confirmation. In many place the whole process takes many months.

Then there are people who get to the neuromuscular doctor and have worrisome findings but do not meet the diagnostic criteria of ALS and are followed until they do. For other readers who may worry these people are not told they are fine or definitely not ALS they are told there is something to worry about and in fact are often given a diagnosis of MND, other.

Dizzy sounds like something else though. Did you have blood tests and an MRI to look for other issues?
 
Last edited:
Thanks! That is very useful information. I also thought that the dizzyness is not really something that has something to do with ALS, in the beginning anyway. I try not to Google too much, so I am not sure if that is the case. My blood results will be in tomorrow, and I did not see the neurologist yet, so no MRI (yet). I will just have to wait... (I am not a native English speaker, so apologies for my 'bad' English)
 
Michael, your English is fine.
Your tongue problem could be many things.
Your neurologist will look for all of them.
It takes many tests, because there is no test for ALS. The doctor must test for everything else and rule out all other diseases.
A doctor can act quickly. My wife had a single symptom--she fell over--and was diagnosed within one month.
 
Thanks for the message. My vitamine b12 was fine. And I hoped that it wasn't. So, today is not a good day for me. Still very dizzy. Waiting for the appointment in 2 weeks is hard and I really hope they will do an EMG right away. 2 weeks is long!
 
Michael, you live in a most beautiful and happy country with really attractive people. Certainly you can find someway to take your mind off this for two weeks.

ALS is rare, so you probably don't have it.

I've learned to live life one day at a time. You wake up. Make sure you're alive. Then make plans for that day to enjoy yourself. Then do it all again the next day.

Don't worry about your disease, or you might become your disease. :(
 
Does your primary physician know about the dizziness? I am concerned about it being a sign of something ( not ALS) that needs immediate attention. There are many causes of dizziness some benign, some not so much. Please call him/ her if they have not already assessed you for this. How old are you?
 
I live in a pretty cool country, that's true ;-). My speech is getting worse and that is so annoying! I mentioned the dizzyness to my GP today and he did not really respond to that. His advice is to just wait for the findings of the neurologist. And we will do that...

I am 35 by the way, so I know that I am still young for ALS. So probably it's not ALS, but something is wrong and I don't 'do sick' so this is scary...

Thanks again for responding. I can only imagine how irritating it is that people are asking stupid questions about this!
 
Just wanted to give you a short update, since it might be useful for other readers. During the visit at the neurologist my reflexes where off, babinski and all. So, there is something wrong. However, it was all on my right side, on the left everything was fine. And, I did not have any weakness. So, although the neurologist totally understood my fear of ALS based on my symptoms, the vertigo was strange and she thought it was something else. So, I got an MRI scan right away (like a emercency scan, since normally I would have to make an appointment for that and wait for a week or so) and something is wrong indeed. A big, like golf ball big, thing in my brain, in the cerebellum. They do not have a clue on what it is, several people looked at the scans. On Thursday the neurosurgeon will take it out and they will then have to examine it and find out what this is. We, my family and I, are hoping that the surgery will be without complicaties and we hope it is not cancer... So, whish me luck ;-)
 
Wishing you luck indeed. While I am happy it is not ALS I am very sorry it is so serious. Please let us know how it goes when you are able.
 
Status
Not open for further replies.
Back
Top