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Coulterjl21

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Im new to this blog! My father may have ALS or a form of MND. It started with slurred speech about three months ago believing he had a stroke we went to the hospital. They first said frontal lobe syndrome because of some brain damage visible on the mri from 40 years ago. However, the speech therapists immediately referred him to a new neurologist because she immediately noticed that was incorrect from just looking at the noticeable nerve damage and muscle reactions in his face. They are leaning towards ALS or MND. Now over the past few weeks, his speech is getting very very slurred and he is starting to have trouble eating without choking or gagging. He has dropped two dishes and a tub of butter over the past two weeks while carrying the items and he claims that they just slipped out of his hand. We have 4 women in our family that have passed away from ALS. 2 of his great aunts and 2 great great aunts on his mothers side. My aunt, his sister has Parkinsons, another sister of his passed away at 32 years old from a brain anyeurism and his mother had passed away from Alzheimers. Please I need answers, Im a strong man, former US Marine, and current Firefighter but I am losing all control of myself. What does this sound like and with those things proggressing in just a few weeks, what would be a reasonable prognosis of his near future?
 

Coulterjl21

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He is 56 Years old, I am 29. I am too young but am very knowledgeable in the health field. I need straight forward answers. Can ALS start with the speech then move onto the muscles?
 

Coulterjl21

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I am New Please Read and Respond!

Im new to this blog! My father may have ALS or a form of MND. It started with slurred speech about three months ago believing he had a stroke we went to the hospital. They first said frontal lobe syndrome because of some brain damage visible on the mri from 40 years ago. However, the speech therapists immediately referred him to a new neurologist because she immediately noticed that was incorrect from just looking at the noticeable nerve damage and muscle reactions in his face. They are leaning towards ALS or MND. Now over the past few weeks, his speech is getting very very slurred and he is starting to have trouble eating without choking or gagging. He has dropped two dishes and a tub of butter over the past two weeks while carrying the items and he claims that they just slipped out of his hand. We have 4 women in our family that have passed away from ALS. 2 of his great aunts and 2 great great aunts on his mothers side. My aunt, his sister has Parkinsons, another sister of his passed away at 32 years old from a brain anyeurism and his mother had passed away from Alzheimers. Please I need answers, Im a strong man, former US Marine, and current Firefighter but I am losing all control of myself. What does this sound like and with those things proggressing in just a few weeks, what would be a reasonable prognosis of his near future?
 

notme

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Hello

Yes, it can. But that is the short answer. His first stop needs to be this: See a Neuromuscular specialist-or a MND specialist. Go to ALS organization for referrals, or the MDA.

He needs an EMG--that will be the first order of business. There are a lot of things that could be happening--though with a large family history of ALS--genetic testing isn't out of order, either, I hate to say. (for you as well--10% of ALS is genetic)

ALS is fast--but not generally THAT fast. Was his onset sudden or slow? Sudden onset suggests it could be something different. Slurred speech and difficulty with swallowing liquids is often the first sign of Bulbar onset ALS--as I'm sure you know with a family history of the disease.

Still--it can only be ALS when it can't be anything else. If he's a Veteran, he has a lot of options as well. Get a referral to someone that specializes in MND and go from there.

Hopefully, they will find other answers. With ALS, the nerves are attacked and the damage shows on EMG--even before weakness shows in limbs. If he's already having weakness in limbs--it is going to show on an EMG.

I wish you the best. It's an awful thing to even have to consider.
 

Coulterjl21

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He already had a Nerve conduction done, that showed very little. An EMG is next but the University of Maryland is swamped right now and the neurologist there wont be able to see him till beginning of June. They have basically told him that they have ruled everything else out. They are pretty sure its ALS or another form of Motor neuron disease. Which one is the question they want to try and answer. This progression of symptoms has gotten worse over a two month period, it can progress that quickly correct? If so what possibly could I be looking at symptom wise over lets say the next 12 months?
 

Coulterjl21

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And it was a slow increase in slurred speech over a 3 -4 month period. Until my mother and a few friends asked him if he was ok about two or three months ago when you could not stop laughing an crying. which they put him on Neudexta to control those emotional outbursts. Whcih the doctor told him was from the frontal lobe syndrome. But his diagnoses is wrong, and a few other neurologists agree it is a wrong diagnosis. That drug is not helping his emotional outbursts at all.
 

Al

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Re: I am New Please Read and Respond!

welcome but sorry about your dad's diagnosis. It's very hard to give a timeline on progression as everyone is different. While your father seems to be moving quickly right now ALS usually plateaus so he may stop progressing for a while. No one knows how long this may stay like that or when he will start to progress again. Feel free to jump in and ask questions whenever you feel comfortable.


Al
 

Al

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you'll get better responses by just having one post in one forum rather than posting the same thing in two separate forums. I have merged your 2 posts.

Al
 

Coulterjl21

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Ok thank you. I have never been part of a blog or forum of any type for any reason, this is all new to me. I want to be careful about what I ask and I dont want to make people feel like I am trying to convince myself that my father has ALS when it could be something else. With that being said, Him and my mother have been trying to protect my sister and I and he has been hiding symptoms I believe, according to what he slipped up and said today on the phone. I believe he had an EMG already done and is afraid to share the results. I am certain, along with three professional opinions that he has ALS or MND. I just want to prepare myself for the future. My mother has nerve issues and spnial cord issues. MS basically even though they have not been able to confirm for that over the past ten years. I am scared that this will be too much for her to handle and to insure his quality of life when the symptoms start to get severe.My father is a family man and his first concern has always been my mother, for 32 years this april.
 

Coulterjl21

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So I decided to accompany my father to his speech therapy session. The therapists says his voice is getting nasaly, whatever that means. She also said that his speech may just be getting worse because he is talking too much throughout the day. That he needs to reserve the strength in his muscles in his jaw. I really wish this Neurologists at the University of Maryland could see him sooner than June 18. If it is what they think it is, shouldnt it be a bit more of a priority to atleast get another test scheduled, I figure june 18 its a meet and greet then who knows how long after that before they schedule any more tests. Seems like a waste of time, and we are losing valuable time waiting for results than we are coping with a diagnosis!
 

notme

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You live in an area of the country where you have literally dozens of choices in places to go. Others here will be more familiar with the area. I can tell you, though, that based on a letter from my doctor, got me into an ALS clinic pretty quickly. All it took is a call to the ALS organization. Contact them. Normally, an EMG and NCV are done at the same time--first the NCV then the EMG.

It is impossible for anyone to give you a time line, I'm afraid. But there are things that the ALS association can help you with now. Has he had a swallow test? Been referred to an ENT? Is his tongue showing signs of atrophy?

It can be other things--but an EMG will go a long way in ruling those other things out or in. There are some meds that can help--medical trials that he can participate in if it IS ALS. Two months to be seen is just too long. He needs a diagnosis if his swallowing is being affected now.

I hope you find any other answer.
 

trfogey

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Coulterj21,

You need to slow down and catch a breath or twenty. It really isn't going to make much of a difference to your father either way if you get an answer today or tonight or even tomorrow. You might want to keep in mind that the people who are most likely to answer you have disabilities of our own that make communicating a chore -- both trying to read your posts (6 posts in less than two hours -- was that really necessary?) and composing responses to those posts (a person who types with two fingers around here probably is a caregiver) with our alternative communication devices.

You can answer one question for me though: Why are you so frantic?
 

Coulterjl21

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I do apologize for that! I am just scared, I have never lost anybody close to me before family wise, Im just losing my mind. Scared for my mother mainly, myself a distant second. My father is my best friend, Its just hard anticipating the future.
 

HelenL

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Coulterjl21, we have a saying on this forum... "it is what it is..." calm yourself down and don't think too far ahead of what it may or may not mean.

One step at a time... assuming you're correct, see if you can get your dad into the VA, and sign him up for his benefits (was it you or him that was in the military) not sure... if he's a vet, go that route... if not, call your local MDA/ALS division, or ALSA office and sign him up. Get him into a clinic where they can keep an eye on his breathing and check his swallowing. Things do seem to go quicker when you first find out about it, and once you realize that you're living with something, it starts to settle down. Your Dad is a couple years older than I am, and we all went through that panicky stage of impending doom... you need to work through that and realize that there's still a lot to contribute.

Good luck, and stay strong for your parents!
 

notme

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Without having had an EMG to state uncategorically that he has ALS is premature. I do understand panic. Here are some things to consider. Most with ALS here as trfogey explained are dealing with severe disability. Some are using assistive devices to type, or typing with a finger--or even with toes or eyes.

You need to take a deep breath. Yes--answers will be good, but ALS is a diagnosis of exclusion-- and an MRI can only rule out so much. There are other conditions much less sinister that can cause his issues.

In the meantime, have your mother watch him for choking. Small bites, etc. His GP, with severe symptoms, can certainly get him evaluated more quickly than two months, as I said.

There are panels of blood work that need to be done. Other things can cause neurological symptoms. Your posts show your panic. I hadn't realized you'd posted so many times.

For the most knowledgeable folks here to be able to answer--it helps to keep the posts all together. Don't make them search all over to put the pieces together.

Even for his doctors--a clear timeline of onset of various symptoms are useful. What tests have been done -- and results-- are helpful.

Parkinson's disease and Alzheimer's and aneurysms aren't related to MND.

The mood swings--if it IS ALS, is called Emotional Liability--but then--even his symptoms with no definitive answers can affect his emotional state, too. YOUR reaction can as well. Remaining calm is the key to dealing with the diagnostic process.

Ask your questions--but realize that it can take time for the people to respond. You've been trained to deal with emergencies--use some of that training now. You haven't lost him today. Be there to support your mother and father as they deal with the process. Again--contact the ALSA to get suggested facilities.
 
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