finally a diagnosis

[Downy]

I have been finally told that I most likely have ALS.
Been to see my third neurologist after expeiring difficulty swollowing and twitching all over my body. I haven't been able to work due to extreme fatigue. My neck muscles appear to be deteriorating rapidly which is also affecting my breathing. I'm disappointed as I posted on here a few months ago and was told the standard read the sticky etc etc. I am frightened for what my future holds. I have suspected I had this disease when all tests including mri and two initial emgs and blood tests were normal. I have a 7 year old daughter who is my world and don't feel I have the strength to fight this disease.

 

[Atsugi]

First, I'm really, really supportive of your decision to consider your daughter. My advice to anyone with a family is "at the moment you suspect you might have ALS, first you get life insurance, then you see the doctor."

Previously you said "I've seen 3 neurologists and had 2 emg rests done. They have been clear" That's really very persuasive evidence of NOT having ALS.

However, you're saying now that you're extremely fatigued, which can happen in advanced cases. But you're not describing advanced paralysis. So excuse me if I'm still skeptical. I'm sorry to hear you're deteriorating, but I'd like to be convinced that you don't belong somewhere else. I'm sure you can understand we want to help every Person with ALS, and so we need to exclude people who have other problems.

Did this neurologist do an EMG? On what did he base his assessment? Did he document a diagnosis code?

 

[starente15]

What other test have you had done? Barium swallow test?

When the doctor said you "most likely have ALS", what direction did he provide as a next step?

 

[Downy]

Thankyou, I value your responses and I'm grateful to have somewhere to express our feelings and opinions. I have read some comments in previous threads and feel people are coming to express feelings and should not be told to read the before you post threads.
I have had barium liquid swallow test, this was clear.
I don't have any paralysis as yet. I had a 3rd emg and this showed abnormalities in my left calf. My neurologist has advised me that it's a process of elimination. All other specialists I've seen include a rhumetologist and an infection disease specialist.
My neurologist has resheduled an appointment in early Feb for a follow up. My symptoms are twitching all over especially around my rib cage and legs, difficulty swallowing. Extreme fatigue doing simple things like having a shower and feeling out of breath i also have lost 11 kilos in 5 months and now only weigh 73 kilos with pretty obvious muscle wasting. I have not been to work in three weeks even though I have an office job. I am looking to spend Christmas with family and try to really cherish it.

 

[affected]

Hi Downy,

I don't have time to go back and read all your old posts so I'll ask a coupe of questions if I may.

Who did you see and at which hospital/clinic?

It is incredibly rare for 2 EMGS to be clear if they were done by neurologists specialising in MND and you have the best of the best there in Melbourne.

What we do say is that it isn't ALS until it's ALS, so you still need to have that definitively proved to you. I know limbo seems hard, but you still have some hope that this is not ALS as you are not presenting at all typically.

I am sorry to say that there isn't any real way to fight this disease, so give yourself and your daughter a wonderful xmas and new year as nothing is guaranteed in this life.

 

[Downy]

Professor Ernest Butler at monash. He's the third neurologist I've seen. Tbh they're all very quirky in my dealings with them.

 

[affected]

Re: finally a diagnosis - well not really a diagnosis yet.

Not sure what you mean by they are all quirky.

You certainly are not presenting with any symptoms that point to a clear diagnosis and nearly all the tests that should show something are not.

ALS is a disease of the brain and nerves and it is widespread, so chronic and active denervation need to be found in 3 different areas minimum. If you have something showing in one muscle in an EMG and nothing else of note in clinical exam and other tests (like barium swallow) then they really can't diagnose ALS.

I know that must be very frustrating, but it's also wonderful news as ALS is a full stop, what is happening with you could still be so many things.

I hope you can just concentrate on life until your next EMG. Good luck.

 

[Downy]

Thank you for your kind words.
It's difficult to not think about things especially when experiencing constant physical symptoms.

 

[Lkaibel]

Agree with Tillie - this could still be a lot of things. I know also what you mean by quirky neurologists. My sister in law is a Doctor and we were just talking about that. They are typically the "geeks" of medicine. Our Dr. Walk is the first one I met with a sociable, people friendly personality

Best wishes with your EMG.

 

[Firefighter58]

Hello Downy, you say you have seen 3 neurologists and several other specialists and still no definitive answer. You speak as though you want to have ALS, believe me my friend you do not want to go there.
Al

 

[KimT]

I'm sorry you are in diagnosis limbo. No matter what you have or what you don't have, I'm really sorry. Many diagnoses involve the waiting game. I have a friend who keeps fainting and falling and even after multiple MRIs and other tests, they can't figure out what is wrong. Just try to hang in there and spent some quality time with your family.

 

[Downy]

With a loving wife and beautiful daughter believe me I the last thing I want is this horrible disease. I have had numerouse MRI and ct scans, X rays blood tests, emg's all over 5 months. I am normally a fit 39 year old. However every day I feel like it's getting harder to swallow and feel fatigued so easily it's hard to accept and not have an explanation as to why.

 

[KimT]

Downy,
Try to focus on your wife and child. I know it's hard to wait for any diagnosis but since that's what you have to do, try to live each day. My friend, Amy, has been trying to figure out what is wrong with her for over a year. She has been hospitalized (once for 10 days with seizures) but still no answer.
You're in my thoughts and prayers.

 

[Downy]

Hi all
This morning I woke up with a choking feeling and can hardly swallow. It's never been this bad. I'm at wits end don't know what to do. Gp just brush it off. Trying to keep strong for daughters sake especially as Christmas eve.

 

[Atsugi]

The most common cause of a choking feeling is stress. Ask for something to relax you.