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Malissa57

New member
Joined
May 17, 2011
Messages
8
Reason
Loved one DX
Diagnosis
05/2011
Country
US
State
IL
City
Plainfield
Hello ALS forum users. Yesterday my brother was diagnosed with ALS, a diagnosis that has left us in shock and heartbroken. In the matter of 6 months he's gone from normal to walking with a cane. His symptoms started as leg twitches and pain in his extremities. Eventually the pain traveled upwards to his neck. His legs are the worst at the moment.

In our disbelief, my family has been flooding the internet seeking information. We've read about misdiagnosis and although we doubt that is the issue in this case, I want to know if these beginning are similiar to others. I also read that a person's life expectancy is unknown but I still need to know what we are up against. In our opinion, his condition is moving rather quickly. I could read and read and read some more but I need answers from people who know.

Also, my brother is the oldest of 5 and I am the youngest. I was diagnosed with two very rare blood diseases 25 years ago (Aplastic Anemia and Paraxsysmal Nocturnal Hemoglobinuria). Both diseases are auto immune issues. Is ALS? My brother would of been my bone marrow match had I needed on. I just find that fact interesting.

I live in the Chicagoland area. If anyone knows of any support groups, walks or events in my are, please advise.

Health, wealth, happiness, hope peace, love,
Malissa
 
His case doesn't mirror mine. Mine began with lower leg weakness, specifically foot drop and diminished 'spring' in my step. Fasciculation in the lower leg followed a few montths later. My only experience with pain is after roughly 18 months and in tight, atrophied arm and neck muscles.
 
My husband never had any pain, until the past 6 months or so. His pain is caused from muscle atrophy, which has in turn, caused his arms to hang by the ligaments. This also affects his neck. He's had ALS symptoms for almost 6 years.

Has your brother been seen by an ALS specialist at an ALS Clinic?
 
Sorry to have you here, but you'll find lots of help here

For support groups and info and walks:
ALS Association
Greater Chicago Chapter
220 West Huron, Suite 4003
Chicago, IL 60610
Phone: 312-932-0000

They can also help with loaner equipment and getting him set up with the ALS clinic.

My symptoms started in my right shoulder but I have not really had any pain, just weakness that is now in both legs as well. I don't think ALS is considered an auto immune disease but others may know more on that. I too am the oldest of five and the love and support of my family has meant so much to me these past nine months, treasure each and every day!
 
Malissa, no--ALS isn't an auto-immune disease. I think that since he had pain in the beginning, which isn't normal for us, a second opinion by an ALS specialist would be a really good idea. Not to say he does not have ALS--but this is unusual. It's not at all uncommon when diagnosed with this incurable disease to get a second opinion.

On a totally unrelated note--you might want to contact the moderator and seek a new user name without your email since anyone can come here and see it. Sorry to have to tell you that on top of your anguish.

Hugs-
Ann

The moderator whose name I see as currently online is "Al"--on the main page, all members online are in blue at the bottom of the page. A second moderator is "rcharlton". Click onto the name in blue and then go to their profile page to leave a note, or go to the last topic on the main page and start a new thread saying you want to change your name, assuming that's the case. xo
 
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I have no idea about how to contact the moderator. My PNH site is more user friendly I think. Thanks for the information though.
 
Malissa,

Pain is not usually associated as an ALS symptom, especially at onset. Was your brother diagnosed by an ALS specialist? What tests were run prior to giving the diagnosis? Did he have an EMG? You have a right to a second opinion.

I'm hopeful that your brother can have his diagnosis re-evaluated.

-Tom
 
Malissa if you want your user name changed click on my name in blue and send me a private message after clicking on PM in the drop down menu.

AL.
 
Hi Tom,

Thank you for your reply. Again, this is all new to us so bear with me. Six months ago my 50 yr old bro started out with extreme pain mostly in his legs. The doctors first said it was restless leg syndrome. His legs would actually lift off the bed. His knees were next. He can barely get out of bed in the morning and spends most of the day nursing the pain. His arms and neck followed. Drs did MRIs but found no masses or causes for the pain. Still today, he doesn't feel weak, he feels pain. He has had a variety of tests but none done by an ALS specialist. I know he's had MRIs, spinal tap and this week the muscle and nerve tests. Dr confirmed the diagnosis because his muscles are twitching so much. His actual quote was "nothing besides ALS will make the muscles in your shoulders twitch like that." I'm a disbeliever and did tell him he needs to be checked for Lyme's disease and see a specialist.
 
Also, his new symptom is pain in his chest. It runs basically from nipple to nipple from the chest to his back. It mostly effects him in the morning yet he has no breathing problems. He has also never experiences speech problems
 
mallisa, is the pain in the chest like a shock wave type pain? My husband gets these, and doc says it is not heart related, but ALS related. We are going to try Lyrica for these pains.
 
Malissa, my husband was diagnosed in May of 2009. We used the ALS clinic at Northwestern in Chicago. Dr. Robert Suffit was the neurologist. It was great. They have a whole team of therapist and physicians. We were so pleased with them. If we had questions, they were only a phone call away and would always get back to us within 24 hours, usually the same day. Unfortunately, my husband wanted to move back to Alabama to be near family and friends. I think he would have had better medical care in Chicago. Good Luck to you, your brother and your family. This disease is a beast as I'm sure you are finding out. This website is a great resource! Janis
 
HI

The CPR Instructor in me forces me to remind everyone that anyone with chest pain that lasts more than 5 minutes needs to be investigated by an Emergency Room. That's the American Heart Association recommendation. (If the pain can be reproduced by pushing on the chest---this is a good sign that it's muscular in nature)

That being said--pain isn't a normal sign of ALS at all--and, twitching alone isn't enough to diagnose it--or I'd already be diagnosed. The fasciculaitons in my hands are nearly constant now.

I'd highly suggest your relative be seen at an ALS clinic. You can find the one closest to where you live by going to the ALSA and reading their lists.

Pain can be a sign of many other conditions--ones that are treatable! If the spinal MRIs don't show any disc damage or nerves being impinged by narrowing in the openings, then there are other neuropathies that are quite painful. Some so bad that people can't seem to get a break from the pain--even with narcotics. (Narcotics don't work well on any type of nerve pain, unfortunately)

All that being said, pain in and of itself needs to be investigated and aggressively treated. Pain is very debilitating all on its own. It can make us more tired, it can make us depressed--and if severe enough, even cause problems with our blood pressure and heart.

I hate to get your hopes up--but I'd certainly get a second opinion from a specialist in motor neuron disease. It's possible they've made a misdiagnosis. Of course, it's also just as possible that he has ALS and something else as well.

ALS can only be diagnosed after ALL other possible causes of the problem are eliminated.

Has he been checked for MS? MS can and does cause pain--even in the chest--it's called the MS Hug

Best wishes
 
If this is any comfort, I have twitching muscles and do not have ALS. I have a lot of muscle pain in my legs, largely due to spasticity, spasms and cramps as well as pain in the left side of my hip (who knows what the cause is of this!).

My point is that "twitching" in and of itself, is not indicative of ALS whereas weakness and muscle atrophy are. Then again, many things can cause weakness and/or atrophy.

I'm hopeful that your brother was diagnosed by those expert in all things ALS.
 
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