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TheBean

New member
Joined
Jun 10, 2015
Messages
9
Reason
PALS
Diagnosis
05/2015
Country
US
State
CA
City
Sunnyvale
Hello,
I have been having symptoms for about 2 years and began putting it all together about 1 year ago. Then denial hit and even though I had a referral to neurology for now constant slurred and worsening speech, I put it off until May of this year. I just last week received an ALS diagnosis which my doctor would like verified by a colleague in a fairly nearby university medical center.

My questions are:
How many tests are enough? I read so many places that so many tests are required. I have had numerous blood tests (with a $5,000 blood test waiting for insurance approval to rule out Gillian Barre), NCS and EMG (both abnormal), repeat of a couple of the blood tests with recent notification that all blood and urine came back negative. I see pulmonary tomorrow to make sure "I can still get deep breaths." And aside from a thorough neuro exam on my first visit and rechecks since, that I all my doctor has asked me to do.

I had slurred speech as my first symptom, followed by tongue atrophy and a lot of trouble moving food around my mouth, followed by massive facsiculations in my thighs, some in my calves which have all but disappeared; some in my face and mouth and a 24/7 tongue twitch that I did not even know I had. Within the last two months I developed weakness in my lower legs and feet and feel very aware of walking where I never did before. I have tripped and fallen numerous times in my home over the past year; but just once outside about two weeks ago. I have a bit of trouble swallowing certain foods--but nothing serious.

Are the tests my doctor ordered and performed all that is necessary? He did say that my symptoms are progressing rather quickly and he is also concerned about that. I didn't dare ask my estimated life expectancy because I don't think I want to know. I could have lived not knowing I have ALS---but now that I do, I am also dealing with a husband who's reaction was
"we may as well sell our home right now because there is no way we can pay for your upcoming medical expenses." That and he doesn't know how he is going to handle it. How HE is going to handle it. Never a question about how I am doing or how I am dealing with my biggest fear: my kids losing their mom. That made me feel like an instant burden. Along with his first reaction he told me that he doesn't know if he should believe me or not and wants to know what it all means for him.

So sorry to long winded--questions again: Not that I want ANY more tests, but were the ones he did adequate (he thinks so); and, does exercise and/or stregthening remaining intact muscles of the legs help? I have been referred to PT. Also, any input about how to handle disgruntled spouses and family members who feel that I, personally, have placed a burden on them would be most helpful.
Thank you for your time and for listening.
 
As I understand it from my experience and research the EMG is the key test for determining Lower Motor Neuron (LMN) disorders. From there they use primarily blood test and MRI to rule out and other causes for the "bad" EMG. Upper Motor Neuron (UMN) disorders are determined by clinical symptoms which from your description it would appear you have. Like UMN then blood test and MRI can rule out other causes. When all other options are ruled out you are left with ALS.

Make sure you are diagnosed by an actual ALS doctor. Other types of neurologist are not as capable or familiar with this "rare" disease.

This site will provide you with many of the answers that you and your husband will have. We are all sorry that you have to be here but will do what we can to support you and help with your questions. The search option at the top of the screen will help you find answers to a lot of your questions. Ask anything you want we are here to help.
 
Hi and welcome. Very sorry that you have to be here

Generally blood tests ncs and EMG are standard. Usually there is a brain MRI too. But maybe with your symptom constellation thry felt it was not needed. But ask your second opinion if there are any other tests you should have to rule out other causes

I am really sorry that your husband is unsupportive. This is hard on everybody but you are the one with the disease. I hope he was reacting so badly from shock and denial

Be really careful about PT. the average PT probably does not understand ALS so try to find one that does. You can,t build strength in dying muscle and stressing an affected muscle risks injury and probably accelerates disease. You do need assessment and plan to prevent falls. Falls are very dangerous for us. Use whatever you need ( afo [brace], cane, walker, wheelchair). It is hard to accept but breaking something would be catastrophic. You will find numerous threads and comments on this. Members here have even died from falls.

With swallow problems starting there is going to be discussion about a feeding tube. It is important to keep your weight up and prevent choking. The tube can help. It is your decision but if you want one do not wait after it is recommended.

Do you have anyone who is supporting you? And is there anyone who can talk to your husband and see what is really going on? That comment makes me think he is really scared
 
hey bean, welcome to the club, sorry you are here but you are and now you need support. get it from whom ever offers help, family, friends, use this forum it will give you a lot of valuable info. an ALS neuro Dr. is best as it is their field. Scared! OH yea, we all are! lets stick together! one love chally
 
Hi Bean...I'm very sorry for your diagnosis. It is very scary indeed! I think your husband's reaction comes from his fear and shock. I hope that you will find some support from this site and also your local ALS Society. God bless you as you struggle with this news of your diagnose!
 
Hi BEAN,

While your doctor was thorough, I always recommend a second opinion from an ALS expert. That is fundamental. I would never accept a terminal diagnosis without seeing the best docs available. Personally, I would spare no expense to get the best medical team on board.

Nikki is totally correct--as usual. PT's are mostly focused on rebuilding your muscular abilities. But people with ALS need Range-of-Motion "exercises" not to build muscle, but to alleviate cramping and joint pain.

I might be the sole person here so far who totally understands your husband. As men, we're not real good at expressing our true feelings. It's a whole lot easier dealing with practical problems like home sales, finances, etc. This drives most women crazy. Are we insensitive? It seems so. But it's not because he's not worried about you and your emotions, it's because he doesn't understand his own reaction.

My wife (RIP) didn't want to be a burden. She didn't realize that carrying physical and practical burdens are a man's specialty. I was "in my element" while tackling practical and physical burdens, and it satisfied me to know I was doing it well. Emotional burdens--not so much. You might need family and friends to meet those needs.

Frankly, your husband must plan ahead. He must think about supporting the family after you're gone. He must think about the survivors' needs as well as your needs.

There are a thousand practical things to think about, and they are easy to express. Inner feelings are really tough, fuzzy, and difficult to express. It's just a man thing. I'm so sorry that your husband seems unsupportive, but really, he's supporting you--and the family--as best as he can.

--Mike
 
Hello Bean. Welcome to the forum. Sorry you have to be here. But it is a great place to come. That confirmation of ALS just drops the floor right out from under you. But that will get better after while.

Try to find an ALS doctor at an MDA or ALSA clinic. Their clinics are multiple disciplinary, which means you see multiple specialist for one copay or free.

Check into social security and Medicare benefits.

Learn the name of the closest MDA representative. He/she will be you best friend. MDA has loan closets that have things you'll need over time.

Search the forum for information. Yesterday I searched for sleep because I'm having trouble sleeping.

Tracy
 
Have you been working? If so you will qualify for disability income from social security. Get assessed by a neurologist who specializes in ALS. There are good ALS clinics where you live, and the people there know how to help as best as possible with this incurable illness.
Scared-hell yeah, you'd be nuts if you weren't given the progression of the disease. I personally think its one of the worst diseases you can have today-far worse than cancer.
As a terminal illness, social security puts you on the fast track for Medicare, so you at least have some insurance.
Your local ALS clinic may have things they can give to you like braces, formula, wheelchair etc.
Most Drs have absolutely no idea how to treat ALS patients, or that we even need different routine treatment. Three things to remember:

1) DONT FALL-if you hurt yourself it will speed up progression
2) DONT LOSE WEIGHT-it will speed up progression. Eat fatty foods- just the opposite of what we have been taught.
3) DONT GO NEAR SICK PEOPLE- if you get sick you stand a much greater chance than a normal person of dying.

If you are having bulbar symptoms, take a swallow test. You may be aspirating food and liquid into your lungs-this will cause pneumonia- one of the 2 leading causes of death for people with ALS.
 
Bean,
I'm sorry to hear about your diagnosis. I agree w/ everyone who thinks your husband is freaking out. He'll need time to process. Meanwhile, letting him know that you're as scared as he is (in a calm way) might lead to the conversation(s) you need to have.

As to your question about tests, an MRI isn't always necessary. What does the summary on your EMG say?

If it's any consolation, the medical expenses aren't usually as huge as you might think. The major expense is outside help with care if your husband ends up needing it. Does he/do you work outside the home?

While waiting for the 2nd opinion, you might take stock of your respective resources (financial, social, personal, professional) as you will need them in future, and eye the accessibility of your home to a power wheelchair, lift and commode riser/chair.

How old are your kids? You will want to agree on what they are told when. As a mom, I understand your fear. But having ALS is not something you can change or cure at the moment. So you will want to channel your energy into how you two as a couple and parents will help your children and yourselves as best you can.

Best,
Laurie
 
> I always recommend a second opinion from an ALS expert. That is fundamental. I would never accept a terminal diagnosis without seeing the best docs available

Ditto that!
 
remember the rules:
------
#1 don't fall
#2 don't hang around sick people, at 1st sign of respiratory issue go to doc
#3 conserve energy, rest, never push it, try to relax
#4 stay warm
#5 take vitamins
#6 power off pwc when not driving and Don't ram wheelchair into immovable objects

ALS is about living, not dying!
-----
ok well, we take what we get and be glad for what we have :)
------
If you have not yet, go to youtube and search "ALS ABC" and watch all 3. I sent those to friends and family, too.

Try to go with the flow, expect fear, anger, bitterness, and a new awareness of life. I have found that being active here on

everyone progresses differently, so don't plan for 'stage' -- take it as it comes.

there's always someone who's got it worse...

find good thoughts to shift when the bad thoughts slide in ...

Max
 
As a woman with teenagers, I understand what you are going through. The time around diagnosis is particularly distressing and frightening for you and your husband. I understand his reaction. I know it's hard, but take it in stride. He need not sell your home to finance your care. There is help through local ALS Societies. At first, you both are in panic mode. My husband and I were so overhwelmed. It's been 5 months since I was diagnosed, and I can tell you that things don't happen all at once. Yes, there's progression, fast, medium or slow. But there's ample time to deal adequately with each situation as it arises. I say this from experience; I have fast progression. At first, we felt as you do. Over time, we (and other CALS and PALS) have come to terms with the diagnosis. Even though it's very hard, we have made peace with it, and have learned to take things as they come, and to not give ALS the power over us to rob us of the joy the blessings of life and each new day bring. There are resources to help you in your area, especially through your ALS clinic or society. Religious affiliation and faith, too, can be a tremendous source of strength, as we have experienced. My thoughts and prayers are with you.
- Charlene
 
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