sinking heart

[SIDELLE77]

My brother was given a diagnosis of ALS 3 days ago. He began having symptoms 11/2008. Clumsiness in his left hand; twitching in his left shoulder & arm; atrophy in the left arm and hand.
Within 3 - 4 months, his tongue was being affected. Up until this point, I was unaware (he was afraid to tell us). Upon learning of this I immediately took him to the hospital. And the tests began.
Only 2 months later, he is now having twitching in his right shoulder; and legs, and it is affecting his lips;swallowing & speech. It is becoming increasingly more difficult to understand him. My mom arrived last night, and we are on a mission to get this boy the proper help he needs. He just turned 36 a few days ago.
We live in Hawaii and there lies our first concerns. Proper physicians/help.

The tests he has had are;
MRI -with and without contrast.
2 EMG's.
blood tests
urine tests
CAT SCAN

Just looking for some input, and thoughts; as we are ready to do whatever we need at this time. What steps should be taken next?

I have read a significant amount of information about Bulbar ALS. This seems so apparent with my brother.

He has asked his neurologist upon her call with the diagnosis if there are any other tests that can be run in order to confirm or deny this; and she responded with the answer - 'an autopsy' (wtf) My mother and I will be calling her tomorrow to set up an appointment to 'chat' with her. :0)

Staying strong for my little bro...

 

[BethU]

I'm so sorry for your brother's diagnosed. I know you will find the support and information you need on this forum.

That's some answer ... "an autopsy." The thought of a neurologist being flippant about an ALS diagnosed is unconscionable. (sp?)

I think with anything as serious as ALS and the short timeline of your brother's symptoms (and your current neuro's attitude), a second opinion is in order. Also try to contact ALSA (the ALS Association). They will be able to give you resources that you should know about.

Experts say that the "best outcomes" are achieved when ALS patients are treated at a multidisciplinary ALS clinic. These are usually connected to universities. I think by "best outcomes" they mean symptom control and treating the whole patient to keep him/her functioning at as high a level as possible as long as possible.

Good luck to your brother. It's great that he has such strong family support. That makes all the difference.

 

[Jennifer51]

the only tests which seem to be missing from your list is a nerve conductive test and spinal tap. I agree with Beth, get a referral for a second opinion at an als clinic
Sorry you had to find us for your brother...no one should have this disease.
Get all the help you can get and come to this forum for help and understanding from the heart

 

[Zaphoon]

A 2nd and 3rd opinion are always warranted when it comes to a diagnosis of ALS. It takes months of testing to rule out all of the other possibilities (in most cases).

You would not believe the amount of blood work alone that can be done when it comes to the "rule out" process.

It is best to get at least a 2nd opinion. It can always be something else until it can't be anything else!

Zaphoon

 

[serenade]

I started with symptoms in July 2008 had one doctor after another many thought MS then Myasthenia, saw 3 neurologist 4 ENT and a allergist. Also had MRI x3 cat scan, blood work ect... The last neurologist did an EMG and said it was ALS, Most of my symptoms to date are raspy slurring speech, difficulty swallowing, shortness of breath, cramping and tingling in my arm and legs. I was selected to participate in a government study for Ceftriaxone that is to be effective with ALS, I guess I will see. I have researched everything that comes my way. Read the book "Eric's winning" It gave me insight into alternatives and educated me on ALS. I also am working with a homeopathic in my area that conducted tests and gave me supplements to balance my body and to deal with what is deficient. I also am seeing my dentist to determine how much mercury is in my fillings, I have high levels of metals in my body, I also was told that I have lymes disease my symptoms fit lymes as well as the ALS diagnosis. I am very new to this all but work to think outside the box and look for alternatives to ALS outcomes. Since starting a healthy diet, doing the supplements I feel better every day, symptoms come and go, I drink 1 oz of poke berry jewel weed juice daily and the cramping is minimal to none at night. Taking it a day at a time.

 

[wheeler641]

hi, serenade, I have been diagnosed with possible Lyme and my worst symptom is leg cramping at night, Could you elaborate on the poke berry jewel weed juice and where can you purchase it. I have tried drinking tonic water and it helped for awhile, now the cramps have started in again. It keeps me up at night as it happens several times, mostly my toes and shins, thanks margaret

 

[serenade]

Pokeberry and Jewelweed Extract

Hi Margaret,

Sorry to here your having those nasty cramps at night, mine were keeping me up too! My homeopathic gave me the Pokeberry and Jewelweed Extract for my arthritis but I found out it worked on my cramps and tightness as well. Here is the info! Try your local wellness/health food store or look on line. I love this stuff Good luck! Judy

Hickey Bottom Herbal Products
Pokeberry and Jewelweed extract
comes in a 1/2 gal
I paid $25.00
Take 1 oz every morning