Need insight

[Aceanddeuce]

I would like to thank anyone in advance for advice or suggestions. My husband (46) was told he had als in Aug. 2011. One month prior he was waterskiing, dirt bike riding, etc. They did an emg and with some muscle weakness and twitching he was having they gave him this diagnosis with the 1st visit. We were shocked and blown away as you can imagine. We went to an alternative doctor and he said he wasn't convinced it was als. He diagnosised him with leaking gut and found out he was allegeric to diary and nuts. Since oct. we have cut out all wheat, milk, etc. to heal the gut. Since December he has lost 20 lbs (began at 152), lost all strength in upper body ( he can no longer lift up our one year old or a gallon of milk.). Legs are still strong, voice fine, no swallowing problems.).
I know they say als is a very progressive disease, but has anyone ever had such a decline within months like this? I'm not trying to be in denial, but just want to make sure it is not something treatable like lymes or a parasite. I can't imagine my life without the father of our three children.

 

[Ms. Pie]

Yes they have. I'm so sorry for ypur husbands diagnosis. Everyone is different. Some people last a long time and some people go relatively quickly. He needs to put n some weight though if he wants to fight this. In my humble opinion the alternative guy is a quack. Also in my opinion you need to stick with traditional medicine, Does he have an ALS savvy neurologist? Have you contacted your local ALS Association yet? The know everything about ALS and can steer you in the right direction regarding references to Dr.s and typically have a stocked loaner closet for all helpful equipment. Let me or anyone here know how we can help you.

 

[CoachMeg]

I always recommend a second opinion. As Marta said, ALS effects everyone differently. My husband was diagnosed in February of 2011 and he is now just about completely reliable on his wheel chair. He gets tired very easily and has been prescribed a bipap.

I am glad you found us, although I know you wish you hadn't had the need. This forum is an amazing place of knowledge, support, and compassionate friends. Wishing you all the best.
Love and light
Meg

 

[lisaohgee]

Please visit the local ALS Association in your area and find a doctor who specializes in ALS. My mom declined rapidly once become diagnosed, levelled off, and declined rapidly again, and now all she has left is some movement in her head and eyes, and some shallow breathing. She was diagnosed May of 2009.

I am so sorry you have to deal witht his terrible disease. My mom was 52 when she was diagnosed.

 

[pmbenb83]

I highly suggest a second opinion also. My husband was ruled out of multiple other diseases that mimic ALS before being given this diagnosis. I have a close friend whose husband all of a sudden could barely move, lift his arms, eat, etc by himself. She called me scared to death and then went for another opinion. It ended up being his thyroid was totally depleted. After being given thyroid medication, he was back to his regular strength within a month or so. There is also GBS (Guillain-Barre Syndrome), which also can present itself as ALS.

Please get a second opinion or even third. That was a very fast diagnosis. Please keep us posted.

Good luck. Take care.

 

[rose]

Try not to worry, sometimes there seems to be a sped up progression, and then a plateau.

However, it would be very good to do whatever it takes to put weight back on. I don't know anything about "leaking gut" as far as if it is a legitimate condition or not, but I do know that researchers have found that a person who is able to keep weight on with ALS tends to experience a slower progression. We had a member told by her doctor, that to gain back five lost pounds is as life extending as taking Rilutek. Extra weight has been demonstrated to be neuro-protective.

If your husband was not demonstrating typical symptoms of allergies to those substances, perhaps consider reintroducing them into his diet, as these categories are calorie dense, and calorie dense is very very good for PALS. If you don't want to try adding the foods back in, look for other ways to get calories. There is a product called bene calorie that is an additive that can be sprinked on, or mixed into food. Look for other foods that would help. Avocados, for example, are wonderful, they're nutritious and loaded with calories.

Good luck to you, its so hard. We all know it.

 

[HelenL]

Unfortunately, if they've diagnosed his condition based on the EMG, I would suspect that it's pretty accurate... that said, you definitely need to keep his weight on, and to call either ALSA or MDA, and get him to an ALS Clinic. I'm sorry you have to be here.

 

[Katie C]

Even with the EMG i would get a second opinion ... from a NEUROLOGIST.... if for no other reason than to help with the denial. Our second opinion was from a neurologist who specialized in ALS so he was able to answer many of our questions especially as the disease progressed. And yes.. it can progress quickly.. or slowly.. or some of each.

 

[Aceanddeuce]

Thanks so much for your thoughts. I am definitely going to call for a second opinion with a neurologist that specializes in ALS. The neurologist we saw said that in 30 yrs he has never seen in any of his patients progress this rapidly which makes me think this might be something else.
Thanks for the tip about thyroid. He does have a lot of those symptoms and after checking his blood work that has never been tested. So, I'm going to call for that test.
I'm going to buy some Ensure tomorrow. Everyone is right- he needs to put on weight. He is a small man to begin with. I am sure I have gained what he has lost.
I know there are a lot of quacks practicing Alternative medicine, so I researched plenty before seeking ours. He was actually a forensic pathologist and a coroner. He was diagnosed with cancer in his 40s and was told there was nothing else that could be done. He moved to India for 3 years to study and he healed himself with herbs and natural medicine. He has won many awards for his research. I do believe nutrition plays a big role in what is going on in our bodies.
We did get approved for Social Security, but have to wait 6 months for it to start. I am not working right now, so not sure how that is going to work out. Getting a little nervous about finances.
So, how do you tell the kids? They know he is very weak and can no longer work. We just keep telling them we are waiting on the doctors for some answers. Only our very close friends and family know what we are going through, so it feels good to be able to talk with someone that is dealing with the same thing. Thanks again!

 

[Atsugi]

Umm, Whoops. No. If I remember correctly, ALS is an "instant" approval at Social Security: no waiting. They send you the cash, and then they investigate whether or not you're disabled. Anybody remember the name of that fast-track program? Some Social Security people don't even know about it.

Is your husband a veteran? Makes a very, very big difference in quality of life.

The EMG is the gold standard test. I hope someone will correct me on this if I'm wrong, but my understanding is that, if the EMG calls it ALS, then there is no other possibility. Am I wrong?

How old are the kids? From Day One we told our teens, mom is sick, then mom is losing her ability to walk, then mom is going to be paralyzed and she will die early. Our teens were thus involved in her care, medications, feeding, everything as needed.

My 50-year-old PALS was active and easily doing cartwheels on Dec 25, 2010, was diagnosed on Dec 29, needed a cane in January, a walker in February, a wheelchair in March, a power chair in April, needed to be fed by May, needed a power lift to be moved around during June, and was bedbound in July. Died quietly and serenely in August 2011, literally surrounded by a dozen loving family.

Sorry so glum. If it's not ALS, I'm very happy for you--go find the true culprit. But if it is ALS confirmed by EMG, then my prayers are for you to get on the fast track of knowledge, benefits, appropriate care, and make the best you can of the world's worst disease.

 

[happygardener]

MY 46 YEAR OLD HUSBAND WAS ALSO DIAGONSED IN AUG.hE HADBEEN INJURED A YEAR BEFORE AND THATS WHEN TWITCHING BEGAN,over the waer he we began to see things slowly but thought it was all due to a neck injury,Now he has lost pretty well all his muscle masss,his right side is seveery atrophied ans he is weak(some coffe cups are too heavy)he is still working and walking (but not well0 and is treating this like like an injury not als.His voice is weak and at times there are swallowing issues.we all know that it is als but this is how he wants to live,I wish i knew how fast,how long,this dideses is full of if,one day can be so wonderful and the next so bad.Try to take it moment by moment.

 

[Susan10]

I would like to know about this fast-track, immediate program b/c everything I see is that the fast track is 5 months instead of potentially 2-3 years. This is from a reliable authority at my local SS office. At one time, according to my support group, they would pay you retroactively to your date of disability if you applied for it, but they no longer do that. Atsugi do you have specifics on this?

 

[momap53]

Susan, I filed last year and there was a five month lag from date of disability, but they did pay retroactively from the time I filed back to 5 months post date of disability. I had been told that without the fast track of the new ALS ruling it could have taken as long as 2 years to receive benefits.

 

[momap53]

Oh, I filed in June of 2011.

 

[brooksea]

SS is automatic approval, but you still have to wait 6 months for the first check. Medicare kicks in after 5 months from approval, don't know why, just the way it is.