My little Brother has a probable ALS DX

[BigBrother]

Hello to all on this forum:

I have been reading it for a few days, and have decided its time to post. My 29 yo brother has been given a probable diagnosed recently.

- He had a pain in his foot,
- lost his balance and fell a few times
- is loosing strentgh in one hand
- his knees are stiff, making walking difficult
- his speech is somewhat slurred

He has been going through tests with a neuralogist, and now ALS specialist.
He hunts and fishes alot so we are also having him tested for lyme disease (which i understand is treatable).

All this is new to me, and I am trying to learn more. I have a few questions, I hope people can address:

1) Are there any stats that would indiate how many 'probable' diagnosis become 'confirmed'? ie Once the probable diagnosis is given, what percanatge of people end up being diagnosed as not having ALS?

I am still hoping it is something else, but would like to know what the statistiscal chances are.

2) If he is eventually diagnosed as confirmed, what are the chances that it is a inncorrect diagnosed?

3) I really do not know what to do at this point. He is depressed, and I am getting scared. Untill now I have been telling him and my parents that at his age its unlikley, and not to jump to any conclusions yet as it has not been confirmed. But inwardly I am really getting scared that he may have it.

What type of attitude have you taken in this situation? Should you try to keep everyone optimistic, take their minds off the stress?

Thanks in advance for any help.

 

[Bryant80]

Hey big brother.I don't know as much as half as most of these people but it seems to me it's a big waiting game.It takes some people years to get diagnosed and some people months.I'm also 29 and worried myself to death for a couple of months.I still don't know if I have it but I have a lot of the symtoms.Then not having insurance I have to wait at least a month to be seen.It's very rare to get it at that age but it can happen.It's best to keep a positive attitude.I stressed myself out so bad I could hardly open my mouth it was so tense.Then finally I got on my knees and made my peace with God.I said no matter the outcome I'm going to stay positive and put this in your hands.I read the Bible everyday now(student Bible,it's easier to understand).I know people die everyday children and soldiers younger than me.Before this happened I was running wild taking life for granite.So I'm thankful for everyday now because tomorrow is promised for anyone.No matter the outcome.Live for the moment.Tell him to keep his head up theres always hope.Take care.I'll pray for him.

Oh yeah thers a lot of caring and helpful people on here.I'm sure you'll get some more replies.

 

[brooksea]

"What type of attitude have you taken in this situation? Should you try to keep everyone optimistic, take their minds off the stress?"

Please try to remain optimistic! Sounds like you will have to be the strong one, the practical one and the advocate - whatever the diagnosed.

The symptoms you describe could be many different things, so I'm hoping your brother does not have ALS! Hang in there and just be there for him as best you can!

Good luck!

 

[indigosd]

1. I don't know
2. The old but true, "If it quacks like a Duck, waddles like a Duck then it must be a Duck".
3. If he is depressed he needs to be on a antidepressant/antianxiety and have a therapist to talk to about his feelings.
4. Positive attitude with a resiliant soul!
5. Use the search feature on the top-it is wonderful. You will find that almost all of your questions have been asked countless times and answered many times.
6. Stick close and support your little brother. He needs you. :] I hope and pray that you will find that he has something that has a treatment and a cure. If not, you will find incredible support and information on this forum if he is diagnosed.

 

[Zaphoon]

Hey there, Big Brother!

Regarding little brother, you didn't mention the period of time it has taken for all of these symptoms to develop. ALS onset is insidious, usually taking its course over a few years. There are many things that must be ruled out that can present like ALS so, take heart.

At this point, my thinking would be that odds are, it is something other than ALS. It can always be something other than ALS until it can't be anything but ALS.

The average age of onset is about 50. The younger you are from 50, the more likely you are not to have it.

Zaphoon

 

[Danijela]

Hello and welcome to the forum. I don't know about the percentages, but perhaps the below can shine some more light (there seem to be two 'types' of probable ALS diagnosis, according to El Escorial Criteria). I think I read somewhere that DEFINITIVE ALS diagnosis can only be given upon autopsy, but I may be wrong. Here are the probable ones:

Clinically Probable ALS: is defined on clinical evidence alone by UMN and LMN signs in at least two regions with some UMN signs necessarily rostral to (above) the LMN signs.

Clinically Probable - Laboratory-supported ALS: is defined when clinical signs of UMN and LMN dysfunction are in only one region, or when UMN signs alone are present in one region, and LMN signs defined by EMG criteria are present in at least two limbs, with proper application of neuroimaging and clinical laboratory protocols to exclude other causes.

Regards. Dani

 

[BigBrother]

Thanks for the responses. In regards to Dani's post: There is no definate diagnosis untill after death? Thus the probable diagnosed is the 'highest' diagnosis for the living? If they are stil testing for other diseases (which they are for my brother) that means they have not ruled out other posibilites, and thus he is not at the 'highest' stage yet, correct?

 

[Twinsmom]

Hi Big Brother,
I am in the same situation as you and your brother with my husband. You've been given some great feedback already. I'm learning, that there are all kinds of tests, that "rule out everything else"...in our situation, after the EMG/NCT we were told, "it looks like ALS"; that was almost 6 months ago, and we still don't have a confirmed diagnosis.

I would encourage you all to continue hoping for the best, and get as much information as possible. I find myself on this site for many hours, just reading the different feeds, as there are many of my own questions, that have been asked before, with a wealth of feedback on here.

Stay strong and positive for your brother and family...
Peace,

 

[fab1]

Big Brother... I have/had many of the same questions as you do about my Mom's probable diagnosis. It is really hard to hear that you might have an incurable disease that has no 100% certain diagnosis. As a family member, I think you are doing exactly the right thing by searching for answers, and doing a lot of research. New research and updates are coming out almost daily. My Mom has bulbar onset - which is different that lower limb onset -- but I find my self wondering about the thread of doctors that led her to the ALS specialist and wonder is there might be a few alternate paths that might have been taken. We also looked into Lyme's ( which is also prevalent in this area and my Mom had been bitten by an immature Lyme positive tick about 10 years ago) I say, you should be the advocate for hope and alternate diagnosis, as long as you or other family members also pay attention to his current mental and medical needs. I'm sure you have seen some of the latest news and given your brother's age - if it is ALS, he would likely be able to benefit from recent advances. Is A Cure For ALS Around the Corner? Liveshots

Best of luck and hope that you get good news,

Mellissa - Daughter of PALS Frances

 

[thelma313]

Big Brother, yes if your brother's doctors are still testing for other diseases then there is still hope. My dad was given the ALS diagnosed only after every other possibility was ruled out.

It sounds to me like you are the oldest sibling... I am too and I have also felt like it is my job to keep everyone optimistic. I really relate to your post. I am so sorry to hear about your little brother's depression but it sounds to me like he totally lucked out when it comes to big brothers. Keep doing what you are doing. It sounds like you are on the right track. Don't lose hope.

 

[dralmiller]

The probability that your brother has Lyme Disease and/or a co-infection is VERY GREAT.
His history has many features that would lead to that conclusion.
These must be considered and ruled out.
Please remember that the screening test for Lyme Disease is the ELISA test which will give a false negative 50% of the time.
If the ELISA test is negative do NOT accept that. Insist on a Western Blot. I wouldn't even run the ELISA test.
Furthermore, the Western Blot test should be performed at a lab that does many and has a good reputation. Also have him tested for the co-infections that are carried by the same vector that carries Lyme - specifically Babesia,Bartonella, and Erlichia.
The best lab in my opinion ( no conflict of interest ) is Igenx.
Igenx has a web site : order panels # 6050 & # 5090 - these are specific for Lyme and the co-infctions.
Igenx will send your doctor the containers to collect the blood along with a Fed Ex mailer to return the specimen to them.
Lou Gerhig had a home in Lyme, Conn. and played baseball at the Yankee farm team in Hartford, Conn. at the beginning of his career.

 

[Moonmark]

Hi Dr. Miller,

you posted a similar response to me some months ago about the possibility of Lyme. I mentioned in an earlier post that I live in Massachusetts and I am outdoors in the woods a lot with my two dogs. I continue to deteriorate physically, albeit slowly, and I do not have a diagnosis yet. I was sent to a rheumatologist who diagnosed me with "tendonitis" of the hand, elbow, and shoulder, not really taking into account all the other symptoms I have that have nothing to do with tendonitis.

anyway, I was tested twice for Lyme disease using the ELISA method and because those tests came back negative, neither he nor my GP would order further testing. when I asked the rheumatologist about the possibility of a negative ELISA, he said that does not happen. when I asked about pursuing further testing, he said there are a lot of quacks out there who will continue to beat the bushes for Lyme disease and co-infections in order to make $$.

just wondering what your response to this might be. how can one convince a dr. to order more tests when he/she thinks they are unnecessary and believes the so-called Lyme-literate doctors are a bunch of quacks preying on people who are ill and are undiagnosed.



your thoughts?

Sandra

 

[Danijela]

Thanks for the responses. In regards to Dani's post: There is no definate diagnosis untill after death? Thus the probable diagnosed is the 'highest' diagnosis for the living? If they are stil testing for other diseases (which they are for my brother) that means they have not ruled out other posibilites, and thus he is not at the 'highest' stage yet, correct?

Hi,

I think it is important to keep hoping until all tests have been done, and all other possible mimicking conditions exluded. In my experience, not many consultants would use a word 'difinitive', simply because there is always a margin for error. ALS is a clinical diagnosis by exclusion (there is no single test that answers 'yes' or 'no', but other conditions can be ruled out). Upper motor neuron damage is assessed subjectively, through neurological exam (brisk reflexes, spasticity, clonus etc. noted) - another reason for reluctance.

You mention he is seeing an ALS specialist. He can always ask for a second and even third opinion. Our consultant was very open to that, and even willing to recommend/refer us to a few leading people in the field. Many on here have had more than one opinion.

My partner did do a test for Lymes, just in case...It was negative. A friend with ALS tested positive, but she still has ALS and is progressing accordingly. We were told if my parnter did test positive for Lymes he would be treated by a course of antibiotics, and we accepted that.

I hope it turns out to be something else.

Dani

 

[ZenArcher]

Requirement for ALS Diagnosis

Along with Lyme test for celiac.

 

[dralmiller]

Careful review of patients with confirmed Lyme Disease revealed the ELISA test was negative in 80 out of 200.
The ELISA test is not reliable.
The Infectious Disease Society of America is in the process of revising the Diagnotic and Treatment guidelines for Lyme Disease.
The New guidelines will be published in 2010.
At the day long testimony of Lyme Experts to shape the new guidelines it was clearly noted that the FALSE NEGATIVES of the Elisa test make it a totally unreliable screening test.
You can confirm my message by doing an internet search.
If your doctor won't order the Western Blot find a different doctor.
I have no financial motive or any other motive other than making the public aware that Lyme Disease is "THE GREAT IMITATOR " and is potentially treatable and curable.
Lyme Disease is caused by a spirochete infection.
In previous centuries another disease also caused by a spirochete infection was known as THE GREAT IMITATOR and fortunately that disease has been brought under control by antibiotic treatment - that disease was Siphilus.