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JenniLee

Active member
Joined
Mar 19, 2007
Messages
38
Reason
PALS
Country
US
State
CT
City
NORWICH
Dear Friends:

While writing to Annmarie, it occurred to me that it might be helpful to hear what you think about my diagnosis (opinion #1....opinion #2 appt. in 3 weeks):

"THIS HISTORY, CLINICAL FINDINGS, AND SUPPORTIVE DATA ARE MOST CONSISTENT WITH THE DIAGNOSIS OF AMYOTROPHIC LATERAL SCLEROSIS, BULBAR ONSET (ALS-BULBAR)."

What I find kind of funny, (my first post will give you more info on my health history), I had a meningioma of the lumbar spine removed 4 years ago (a non-cancerous growth). I have had on/off back pain since, but is ususally okay so long as I stretch and exercise. Over the past month, since my foot felt weak, my lower back has been terrible. The foot started only from spending a day on my feet shopping. I know the medical technology doesn't lie, but it seems so odd that after a bad med reaction, the speech was a problem, then the fingers....after that shopping trip, the foot was a problem.

How do THEY know I don't have a lower back problem, again? How do THEY know that my dental procedure didn't cause a problem? Gee, I had 3 teeth removed, with tissue inplant (ground calcium from cadaver bones) after which when I was home recovering, I passed out 2 times, hitting the back of my head the first time and the front of my head the second.

I know, I sound pathetic, grasping at straws.....but, to be honest, I would believe more in the insights of my new friends on this site to the last "specialist" I saw.

Jen
 

Meg1

Distinguished member
Joined
Jul 5, 2005
Messages
118
Jen --

When I just responded to your post on another thread i didn't realize you were so young and newly diagnosed. My condolences.

As for your questions, as much as we all know here, AFAIK none of us has a medical degree and we can't examine you so please trust (qualified) medical professionals more than you trust us. It's doubtful anyone here would give you much guidance anyway and if we did you shouldn't trust it. If you've seen one PALS, you've seen one PALS. All of our stories are different and while many of us have done a great deal of research on our conditions, we're mainly just experts on ourselves. That said, and violating all of my caveats about on-line medical advice from non-professionals, it's not uncommon for ALS symptoms to first show themselves following some trauma or emotional upheaval. But that observation, of course, means nothing to your specific case.

The most important thing to consider when evaluating a diagnosis is the experience your physician has in treating/diagnosing PALS. I would never trust an ALS diagnosis from anyone other than an ALS-expert neurologist operating out of an ALSA-approved ALS center. Generalists and even general neurologists just don't see enough ALS to reliably distinguish it from the copycats. If you were originally diagnosed at an ALS center (and you may have been), and particularly considering your age, the person who diagnosed you would almost certainly suggest a second opinion at another center. IMO, at your age with your unusual health problems and history, a minimum of two opinions from ALS centers would be required for reliance on the diagnosis.
 

JenniLee

Active member
Joined
Mar 19, 2007
Messages
38
Reason
PALS
Country
US
State
CT
City
NORWICH
Thanks Meg!

Actually the doctor was from an ALS approved diagnostic speciality...whatever they're called. But he never advised of a 2nd and a barely talked about follow-up. In fact, I had to ask him about meds and could he prescribe them. He pretty much told me the diagnosed, made me feel like it was all done, and come back in a month to meet "with our team", who by the way, gave me the following advise ....1) record my voice for my family and 2) wanted to give me "backpacks" for my kids to tell them what was going on. They had NOTHING positive to say. I could go on and on about that visit , but it was such a downer...

Thanks,
Jen
 

ltr

Senior member
Joined
Feb 11, 2007
Messages
690
Country
US
State
NY
City
Elmira
Hi Jen,

I am really glad you joined the forum. I think you will find that the people here are very knowledgeable and most of them are very friendly! I (and you will probably hear from others as well) would be very, very curious about how your symptoms began. Many of the people on this forum have had numerous opinions to be sure of their diagnosis. Many of them have had uncaring and unprofessional acting docs. It makes you wonder if you can trust their diagnosis! Maybe that's why so many of the people here seek out more opinions. So, I agree with seeking out more opinions. And I think you will get very valuable information from the caring people on this forum. Keep in touch! Leslie
 

joelc

Moderator emeritus
Joined
Jul 15, 2006
Messages
2,786
Reason
PALS
Diagnosis
09/2005
Country
CA
State
BC
City
Abbotsford
Jen, my heart goes out to you! We are all to young to have this horrible condition, especially people in your age group!
The one thing I have come to appreciate is what Meg said about each of us being so different in our initial symptoms and how different each of our progressions are. It is because of this the researchers are having such a hard time trying to figure out a cure.
When my first diagnosis was given I just knew it was correct, you know how sometimes you just know inside? I did not want the diagnosis, but knew it was correct. Even then I still sought 2 more confirmations - I would encourage you to get at least one more from a qualified neurologist, before accepting an ALS diagnosis. Maybe you will get lucky!?
Keep posting, people here really do care!
 

liz

Senior member
Joined
Nov 9, 2006
Messages
642
Reason
PALS
Diagnosis
11/2006
Country
US
State
NY
City
Albany
Hi Jen -

I am so very sorry to hear about your diagnosis. I'm also a mom with school-age kids and it's very difficult for me to think of what they're going to experience because of my disease.

I'd like to second Meg's advice. All the Internet research in the world can't substitute for a hands-on clinical exam by a trained professional. The Internet and this forum are great sources of information to help you become a knowledgeable patient.

Best wishes to you,

Liz
 
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