Weakness of Tongue

[patricia1]

Hi Wayne My family didnt deal with my illness for 4 years they would say theres nothing wrong with your speech is probably from your nerves or they never would even address there was a problem so I guess if they ignore it maybe it would go away. Anyway hang in there feel free to write me anytime I know what your feeling. Pat

 

[CindyM]

Hi Wayne. If your Dad is a doc and is not concerned then I'd hold onto that thought. But I would take the advice of others and go to a good neuro when you get the first appointment. Even if it takes a couple of months it will be worth the wait. You'll be able to get definitave answers and know how best to proceed. Two months is not too long to wait - unless you are in great pain and it doesn't sound as if that is the case right now. Here's hoping you get some answers soon! Cindy

 

[wayne_md]

Do you guys know anything about speech pathologists? If this thing isn't ALS (I don't have any fasciculations or swallowing problems), then perhaps a speech pathologist can help me. The problem with me is that these are grave problems, which means it'll be harder to help me. Do you guys know if it's possible to have ALS, but have no fasciculations?

 

[CindyM]

I am kind of new at all this myself so I don't know the answer to your latest question. I will say that I didn't know I was having fasciculations until a Doctor pointed them out to me. One thing you said sounded familiar to me: sometimes my speech slurrs but when I ask people around me they tell me it is my imagination. I know it is not. When my speech is slurred my tongue is tingling and my jaw is guivering. Maybe when this first starts it is only apparent to us and not to any bystanders? Who knows?

 

[patricia1]

same with me I knew I was slurring and my family didnt hear it until it was worse and then they tried not to think about it That was in 1999 Pat S

 

[Lynn555]

fasciculations

Hi Wayne, I would definitely go to a neurologist, especially one that specializes in motor neuron diseases, even if it takes a few months to go to one. My mother started having thick speech and slow speech and finding it hard to pronounce words with more than one syllable 8 years ago. She still does not have fasciculations, but she was diagnosed by the Mayo Clinic in AZ with progressive bulbar palsy just this past November. It seems that ALS and pbp is different for everyone and progresses in a different way and at a different rate for everyone. If it's ALS or pbp, you may get fasciculations later. But it may not be that, so definitely get checked out. My mother went to a lot of speech therapists, but no one could help her because she was losing control over her tongue, but they didn't know that then. But you could go to one and see if it helps. But I would definitely also go to a neurologist. :?

 

[ahpeditor]

Wayne. I think you are way overthinking this. I would think you'd have to eat a way more tuna than a couple of cans a day to get mercury poisoning if you even could get it from doing that. A 2 month wait for a Neuro is about right for Canada or the US so I'd try to remain calm and wait it out. And by the way DO NOT listen to anyone who tries to sell you a detoxifying program. It's a scam. AL.

Al, What medical research have you done to prove or disprove the correlation between ALS and mercury? Have you an advanced or medical degree that gives you any more insight on this subject? Just curious.

I am in the very early stages of researching their effect and have NO particular explanation or scientific background to support this statement, but I would NEVER discount the impact of mercury and heavy metals on our bodies or the effect they may have on the neuro-muscular system. I certainly wouldn't rely on what a neurologist has to say about it. At least none of the neurologists I've met.

Joel

 

[liz]

Hi Joel -

Welcome to the forum.

I know what you mean about neurologists. Sometimes it feels like all their poking and prodding (and shocking) of our bodies is a bit like quackery. These motor neuron diseases are so bizarre. I felt the same way about an eye doctor who examined my one son when he was 18 months old. She held up what looked like a bunch of prisms to his eyes then announced he needed surgery right away. It looked like so much voodoo to me that I said no way to the surgery. Weird! But he did have eye problems and I do have ALS despite my feelings about all these docs. Oh well.

Nice to meet you.

Liz

 

[CindyM]

I just had some valuable feedback about the slurred speech thing! My niece works in a bank and one of her co-workers had bulbar-onset ALS but didn't realize she was ill. It seems the customers kept reporting to management that she sounded drunk on the phone. I imagine it must be a bit unnerving to think your banker is drunk in the middle of the day!

Anyway, management started paying attention, but they didn't hear the slurring. They asked my niece, who worked next to her, and nobody in the area thought the woman was slurring her speech. Apparently when you are used to hearing someone every day, you don't notice the deterioration. But the woman was ill, all right. Unfortunately she passed away last year.

So now I feel validated. I know my speech is off sometimes. If others can't hear it, that's because they hear me the way they are used to hearing me.

 

[Al]

Hi Joel. Welcome to the forum. I don't have any degrees but have been living with ALS for 4 years and have read extensively and other than people trying to sell detoxifier kits no other credible profession has gone on record as saying they will cure anything. That's my opinion. Some people respect it some don't. Just like the disease we're all different. So you don't rely on neurologists? What type of doctor diagnosed you? Do you have ALS or do you peddle detoxifier kits? I see you give no information about yourself in your profile and you don't have to but it does help maintain your credibility especially when on your first post you put up dissenting opinions which are welcome at any time. We value all opinions just don't try to sell us false hope or anything else. AL.

 

[ahpeditor]

Al, My wife was officially diagnosed with ALS on Jan. 4th by a neurologist at Mayo Clinic. I say officially because she saw an extremely insensitive neuro on Nov. 10th, who told here she MAY have BFS, or MS, or ALS during her very first consultation. This was after an initial clinical test and before he had even scheduled an EMG! My wife was alone (I didn't attend this consultation because my wife said it wasn't necessary, a fact that I will regret until the day I die), afraid and nowhere close to being mentally ready for such callous treatment. We asked for a referral to Mayo hoping for better treatment.

Mind you, we never asked for sugar-coating and fully expected to be told the truth regardless of the diagnosis. But when the neuro at Mayo told us it was ALS, it was as if she was reading from a manual. She didn't even offer a tissue. The person at the front desk gave us a packet and we were on our way home less than an hour after the diagnosed.

On our first visit to the MDA clinic early last week in Des Moines, we had a consultation with a new neuro (my wife refused to go back to the original neuro). When he read of her diagnosis, he asked why we wanted to see him? As if it was a waste of his time. I don't think the words neurologist and compassion have ever been used in the same sentence until now.

I replied to your post because I came to ALSforums looking for answers and hoping that people would have an open mind. I can tell you that I will sell everything I own and spend every penny I can beg, borrow or steal before I will give up hope that there may be something that can be done for my wife. No one we have talked to yet has offered any alternative to simply giving up. I know that no amount of wishful thinking will help her get well. But, I can tell you that I get damn mad when I see someone's honest questions about Mercury and its affect on the nervous system get brushed off as quackery, a waste of time, or simply BS.
-Joel

 

[Al]

First off Joel let me say how sorry I am at how badly your wife was treated. I have seen 5 Neuro's and 1 was an abrupt bitter person with the personality of a turnip. I refused to see her after 3 visits. The others, while a bit clinical at least treated me with compassion and understanding. While at present there is no good news at having ALS there is still hope. My point is there is hope in the future, not in old scams that have been around for years and didn't work 20 years ago and won't work now. There are other forums that let these guys peddle their wares and peddle false hope. We don't buy into that here. We are a support forum made up of people with ALS their caregivers and their families and friends. A new person came on forum asking for advice. I gave him the best advice I had. Can you really n your own mind think you can get mercury poisoning from eating tuna fish? I didn't say that mercury or heavy metals can't cause ALS. I said Tuna Fish doesn't cause it. If you read the past forums you will find that there are a lot of desperate people coming here for answers. I could not sleep at night if I didn't try to keep them away from people that would prey on their ignorance and desperation.
If they want caring support and honest answers from people that have ALS and their caregivers then they have come to the right place.
If they want to chase false hopes and spend money on suspect remedies well there are other sites that allow that and they are welcome there.
We don't do that here.
AL.

 

[liz]

Joel -

My husband, upon being told of my diagnosis described himself as feeling "blind-sided". God knows I did too. The first few days and weeks were just awful. It takes a little while for something this big to sink in. How is your wife coping with the news? Do you guys have kids and if so have you told them? It is too bad you've had such negative experiences with the doctors so far.

As far as this forum goes, I've seen some beautiful support shared between caregivers and maybe you can join with that. There's also tons of practical information about coping with the disease as it progresses. Some folks do a lot of research and post useful links.

There's a saying in some self-help groups which I think applies here also - "take what you can use and leave the rest".

Hang in there.

Liz

 

[hope]

Joel,

I understand how you feel. We want our loved ones to be well and the pain we are all in is something no one can put into words. It is heartbreaking this illness and when I read your words about trying to keep hope I agree with you. We have to do everything we can because who else is going to. I remember the day we were told my husband had ALS we were shocked, numbed, scared and we recieved a pamphlet, yes the doctor we had was kind but that was all there was. For months we have held onto each other and learned in our own way how to cope in this. I believe there should be more for the patients and the families. HOPE is so imporant. In life we all want that. We hold on for a cure. We never give up. I am sorry you are in this. I believe changes are needed for those suffering with this disease.

hope.

 

[ahpeditor]

Al and everyone else,

Can you really n your own mind think you can get mercury poisoning from eating tuna fish? I didn't say that mercury or heavy metals can't cause ALS. I said Tuna Fish doesn't cause it.

How do you know that? I'm shaking right now trying to decide how you can say in one sentence that you can't get mercury from tuna, and in the next that mercury or heavy metal may cause ALS. A better response to someone who asks is "...if you have any doubts, why take a chance?"

I have eaten lots of fish (tuna included) in the past 52 years and as far as I know, I suffer from no known neuro-muscular disease. But my petite wife, Lisa, has eaten little BUT tuna for most of her adult life. (How do you think she maintains that slender figure!) In addition, she has worked in dentist offices for the last 30 years where amalgams fillings have been used. She has one silver filling and seven root canals. I can go on and on through a long list of factors we have discovered in the last few weeks that may have added to the toxicity levels in her body. My point is, the mercury from tuna or amalgams or wherever it comes from may not be a problem for 99.9% of us, but I think it is very possible that it may, just possibly, be a problem for that 1/10th of 1 percent who are prone to neuro-muscular disease.

Silver fillings contain mercury, and even though dentists and the ADA will tell you that the mercury is "safe" because it is encapsulated, I find it much more likely, that as the silver that surrounds that mercury degrades over the years, a little of it may end up affecting your brain and nervous system. It probably doesn't take much. So if someone asks me if the tuna they're eating can cause ALS, I'd probably tell them the chances are slim as well. But I'll also mention that the metal in their bodies probably can. That's much more responsible, IMO than just shrugging it off.

Dentists and the American Dental Association have a huge stake in telling you that amalgam fillings are safe. If they ever admitted that they weren't they would all be out of business. It's an incredible Catch-22 for dentistry. I'm sure most dentists (and I know several from the years that my wife worked with them) are not evil. They don't want to kill their patients. But think about it. What a dilemma they face. On the one hand, their patients are screwed (or at least a very small percentage of them) if they use amalgams. And so they play the odds and continue to use them. But the minute a dentist stops using amalgams, they're admitting that they might not be safe, and that means THEY are screwed. Since it's safe to say that practically every adult in the US has at least one silver filling, think of the lawsuits it would open them up to. No, they will never admit its harmful. But that doesn't necessarily make it true.

Dentists who remove amalgam fillings because they feel they are unsafe can have their licenses pulled and be barred from ever practicing dentistry in the US by the ADA. They're not even allowed to talk about it. That's kind of scary.

-Joel