Status
Not open for further replies.

affected

Guru status reached
Joined
Apr 26, 2013
Messages
16,096
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
AU
City
lala land
Hon, the eye symptoms you describe had nothing to do with ALS, so if you are having eye problems get it checked as it will be something else and will be treatable.

It is true that you have as little chance of developing ALS as I have because my husband had it. One person in the family does not increase your chances by a single thing.

I know you say you can't afford a doctor, but we can't do anything but say you don't describe ALS to us, so you have to go to a doctor. Truly if you thought you had a disease like this you would need to get it checked in case it is something that can be treated if caught early! You can't just give up and think you are going to die.

Good luck pursuing this with a doctor, tell them clearly your fears.
 
Thanks for listing specific symptoms. I understand that you have:

"Watery eyes, frequent vision changes, from improving, to blurry, often within minutes of each other. ... aluminum taste in mouth. Excess nasal drainage and saliva. Decrease of fine motor skills. Trouble breathing with exercision. "

But those symptoms have nothing to do with ALS.
 
If you say these are not ALS symptoms, then why did the ALS Association say they were? Why have they been following me to see if I started experiencing any of these symptoms? Why did they say that less than 1% of those whop are diagnosed with ALS experience these symptoms? Why did they say these were real symptoms, that others, besides my mom experienced?

Yes, I know that ALS and Lyme's Disease may be one in the same. That is why the ALS Association has been following me since 2002, when I first contacted them.

To some $10,000.00 may be a drop in the bucket. To me, that is about 1/3 of my annual income. In order to get that much money I would have to sell my home, get rid of all of my daughter's and my animals, move into a small city house, and die. That is not an option. I understand the benefit of country living, having animals who rely on you, to give you something to live for.

I am reaching out to anyone who has or had a loved one who experienced these symptoms. they were very real for my mom and made her diagnosis so difficult.

I understand that ALS is a very complex condition. there are the "usual" symptoms. there are those that are a lot rarer.

I recently had an eye exam. Have new glasses, which are often too strong, or not strong enough, just like my mom experienced. Am using some glasses at times, which were from 10 years ago, just like my mom did.

Please, if anyone is familiar with the symptoms my mom had I would love to hear from you.

If you just want to dismiss what killed my mom, then please do not respond.
 
Honey, no one said in any way that your mum did not have ALS.

What we said was that her eye symptoms are NOT ALS. People can have more than one health issue at a time.

Eye involvement is not an ALS issue, not even a rare one. You would have to ask the ALS association those other questions, sorry we can't answer them.

ALS and Lyme are not the same disease, no one here would suggest that in any way.

I don't live in the US so have no idea about what it would cost you to go to a doctor and have yourself checked, but surely a single visit to a PCP could not cost that much? You should discuss your anxiety with some medical professional who can examine you as there could be anything going on and a start needs to be made on what kind of testing would be appropriate so you can decide on your financial situation for further testing. Simply testing of that expense for ALS would not be appropriate, but a first doctor visit would be.

All the best in working your health issues out
 
Island1979Girl: No one is dismissing you. We're trying to make sense of what you've written so we can give you good advice.

I'm not aware of anyone on this forum who has your symptoms.

ALS is a disease of the motor nerves, which destroys the nerves (in the brain) that tell your muscles to contract. So the arms and legs stop working. In rare cases, the disease might start by destroying the nerves that control the tongue, so, in those rare cases, speaking and swallowing are the first to go.

Have you looked into Medicaid? That might make healthcare more affordable for you.
 
As you have written,

"My property is worth a lot of money, and will give me some security. My daughter and I also have horses and other animals on my farm here."

"To some $10,000.00 may be a drop in the bucket. To me, that is about 1/3 of my annual income." (Is this income you still have after quitting your job?)

"In order to get that much money I would have to sell my home, get rid of all of my daughter's and my animals, move into a small city house, and die. That is not an option. I understand the benefit of country living, having animals who rely on you, to give you something to live for."

My opinion... this is one of the most selfish self centered Threads I have read here in a long time. There are ALS members of this Forum who can not afford medicines, assistive devices or assisted care... and they are dying. Many have little means and have moved into smaller places or with family. Some now live in three room community centers. Certainly not what their lives were before.

If you did by the wildest chance have ALS you'd better get over your horses... sell them.

PS. If you own property that is worth a lot of money, own horses and other animals... why do you go to a "quack clinic" as you call it? And... are the horses and animals seen by a veterinarian? They aren't cheap! I hope for animal sakes he/she isn't a "clinic quack" too.
 
IslandGirl,
Sorry to hear you lost your mom and your fiancée.

Some of your sx cancel each other out. Watery eyes mean vision changes. Bad taste in mouth often reflects allergies/sinus drainage issues, which can manifest in the eyes...and a farm is always a possible haven for allergens and/toxins that cause upper respiratory system issues. Advanced Lyme most often manifests neurologically, not in the UR tract. As does ALS, of course.

Decreased fine motor skills is a subjective thing until you have pre/post data and clinical confirmation.

So we don't have much to contribute here, since, as you point out, it's the big-ticket items like eating, swallowing and speaking that fade out with bulbar nerve death. But you don't have those. I'm not sure what you're asking, but agree w/ others who suggest you start de novo and be worked up, and it does seem like you might qualify for Medicaid, though you own property and I'm not sure of Wisconsin asset tests.

The one thing I am sure of is that the mind is a powerful thing, most people have multiple health issues and nothing's written for you as yet based on what you've presented. Best of luck.
 
OK,

some people's idea of a lot of money is different than mine. I could sell my property, and purchase a modest house in the country, and still have $100,00.00 left over to take care of living expenses and medical expensses for a while.

"My property is worth a lot of money, and will give me some security. My daughter and I also have horses and other animals on my farm here."

"To some $10,000.00 may be a drop in the bucket. To me, that is about 1/3 of my annual income." (Is this income you still have after quitting your job?)

No, after my final days at work, I will have $20,000.00 to finish construction of my house and pay for moving expenses.

"In order to get that much money I would have to sell my home, get rid of all of my daughter's and my animals, move into a small city house, and die. That is not an option. I understand the benefit of country living, having animals who rely on you, to give you something to live for."

My opinion... this is one of the most selfish self centered Threads I have read here in a long time. There are ALS members of this Forum who can not afford medicines, assistive devices or assisted care... and they are dying. Many have little means and have moved into smaller places or with family. Some now live in three room community centers. Certainly not what their lives were before.

My mom was one of those people. she was new to medicare when she was diagnosed. I am not selfish or self centered. have worked in human services for the past 40 years. Also donate tons of time and money to nonprofits in the area. Anyone who knows me, knows that I am one of the most caring and giving people in this small, rural area I live in. Also have been on the board of animal rescue shelters, and currently have almost all rescue animals. without me, those animals would have been put to deeath, so do not call me selfish. I am always putting the needs of others ahead of my own.

If you did by the wildest chance have ALS you'd better get over your horses... sell them.

Putting my daughters and my rescue horses to death is not an option. I prevented them from death once before, and would rather kill myself than kill them.

PS. If you own property that is worth a lot of money, own horses and other animals... why do you go to a "quack clinic" as you call it? And... are the horses and animals seen by a veterinarian? They aren't cheap! I hope for animal sakes he/she isn't a "clinic quack" too.

The quack clinic is covered by my health insurance. Others require a considerable co pay. Pus my work insurance has a $4000.00 deductable, after meeeting that, there is a 40% co pay. Any other clinic/hospital in the area has a higher co pay.

How dare you accuse me about not caring for my animals needs who I put ahead of my own. They are seen and cared for by the best equine vet in the area who supports what I am doing dispite my own limitations.
 
Thanks to those who have offered support. Gues no one here knew anyone who was in the less than 1% that my mom was in. The ALS association said her aluminum taste, her drastic vision changes, her watery eyes, excess saliva, and nasal drainage, were all rare ALS symptoms. So, for those who know more than the ALS Association, great. may you do a lot of good for thousands of people who were duped by them, and who were misdiagnosed by their doctors.

I will not be back, and will deal with my symptoms and medical advice elsewhere. Thought it was woth a shot, but I ahve always been a loner, as my mom was. Thank you to all.
 
Status
Not open for further replies.
Back
Top