Newbie Diagnosis

[patricia1]

Jenni lee I could see you are in the early stage of ALS diagnosed DENIAL AND ANGER We were all there and I have never given in I have tried alot of the scams and I told you all how it went to try and spare you all the expense and heartache, but by all means you can and should try everything . There is no cure for ALS and that is way a pray evrynight for a miracle because thats our only hope right night Until a movie star gets ALS it will be the orphan disease .Dont be unset with us we are here for you,we are on your side Pat

 

[ltr]

Pat,

It's funny that you mentioned a movie star, because tonight, when I was watching the news and how the stars have bright breast cancer (and other cancers) into the spotlight, I thought the same thing. How can we get someone modern, rich and well-known to bring als awareness to the country. I think the closest als has been is with Christopher Reeves. If there are others, I never heard from them. I only became educated about als after I became ill. I really wish some of you would start video blogs. Believe it or not, the younger generation would become educated this way. Great time to move to a new subject, right?! Leslie

P.S. Al, I am really sure that Bogey meant to say not many people "are" like Al.........it doesn't make sense the other way!

 

[Meg1]

Leslie,
it is funny I just wrote the movie star thing, before I read your posts, on another thread. We need publicity.
Pat thank you for your support, you are kind and so educated about this disease. I know we all just want a miracle, why or why cant we get a miracle. It has been sixty years since Lou G. has passed, and we have not gotton much further. We all need each other, with numbers we have a voice, we must stand together, seperated we will be totally overlooked.

Annmarie--

When were you diagnosed? I thought I remembered that you had a recent clean EMG and the doctor said you didn't have ALS but your profile says you are a PALS. Am I getting you confused with another poster?

 

[ltr]

Just click edit Annmarie. I don't think it is any big deal, I noticed a lot of undiagnosed members profiles say that. Probably just being in a hurry when signing up and it goes unnoticed. Have a good night!

 

[Meg1]

You are correct Meg, I just looked at the profile, never noticed that was on my profile, how do I change it, I did not even see that part when I signed up. I am going for my second EMG next week. Sorry for the confusion..

User CP, Edit Profile

The only way that sentence could have appeared in your profile is for you (or someone with access to your account) to have typed it in.

<see below for addendum to this post>

 

[ltr]

If you look above, mine even says I am a senior member! I guess mistakes can happen on chat forums!

 

[Meg1]

If you look above, mine even says I am a senior member! I guess mistakes can happen on chat forums!

You're a senior member by virtue of the number of posts you've made.

And, annmarie, I just checked the profile and it looks like they've added that business about "how ALS has affected you" since I registered here. Originally the only way that would have shown up in your profile is if you typed it in. I see now that anyone who registers here has to opt out of the "I have ALS" line in order for it not to show up in a profile. FWIW, I think this is a not a good way to set up the accounts (in case David or anyone who can fix it is reading).

 

[andyk]

Response from Andy - Newbie

Hey everyone,

Wow! That was quite a response in the last day or so. I appreciate everyone taking the time to think about my situation and respond.

It's a tough situation--do I agree with the doc that I probably have ALS and start making immediate plans for the gradual or not so gradual slide downhill? Or do I decide that it isn't a definite diagnosis, and seek out additional opinions and options, and start doing what I can about my present sypmtoms?

I have heard of people being misdiagnosed. There's a doctor in Colorado Springs that was misdiagnosed with ALS and it turned out he had Lyme disease. He is now running a Lyme clinic. When I mentioned this to my neurologist in Denver, she said "He was a patient of ours", and gave me a look that said: don't believe everything you hear.

Then there's Eric Edney. Apparently he's been living with ALS for over 15 years with a decent quality of life. Does that mean that he really doesn't have ALS? Or that maybe his recommendations for detox and diet might actually help someone else.

Whatever happens, I sure have a greater appreciation for life's everyday occurences.

Psychologically, it feels like Step #? of a 12 step program--the one where you apologize to those you've wronged. I don't necessarily believe in the afterlife, but it can't hurt to right a few wrongs and for me to try to let my kinder, gentler self out more often.

It will probably take a while for me to get a 'final' diagnosis, and in the meantime, I'm going to take an active approach with my health and not just wait passively to go downhill. On the personal side, I've noticed that I really want to spend more quality time with those who have been important to me throughout my life, and also have a bit more fun along the way.

I also started thinking about the poetry and music I'd like to have at my funeral. Maybe I'll have a memorial service while I'm still alive. That would be pretty cool.

I'm working on my ALS jokes, too. Here's my first one: Well, the good news is--I won't have to worry about getting Alzheimers or adult onset Diabetes...

A mix of information, plus your support along with a dose of reality at this point is what I probably want.

 

[Meg1]

Sorry, Andy. I'm afraid I forgot about your original question in my responses. I'll keep it short:

Anyone who is suspected of having ALS should be evaluated at an ALSA-approved ALS center. I would not trust an ALS diagnosis from anyone other than an ALS expert--general neurologists do not see enough ALS to reliably diagnose it. Let us know if you need help finding an expert.

Your symptoms are not particularly suggestive of ALS but anything is possible with this disease. I do find it curious that you don't mention cramping, hyperreflexia/clonus or spasticity--all symptoms typically seen in PALS.

Dr. Martz (in CO) was never diagnosed with ALS and does not himself claim to have been (at least I've never been able to find a quote where he says that--the lymies have made that claim but he just says that ALS was suggested as a possible explanation for his symptoms which came on very quickly and were not otherwise typical of ALS).

20% of ALS patients live longer than 5 years and 10% live longer than 10 years. To put that in perspective, that's pretty much the odds that Elizabeth Edwards has with her cancer and I don't think she's picking out the music for her funeral yet.

And, as for your jokes--well, don't quit your day job quite yet.

 

[andyk]

Hi Meg,

Thanks for the straight-forward response.

I'm pretty sure I was seen by an expert--I was referred to the University of Colorado Medical Center (Drs. Ringel, Quan, Neville) by three separate sources.

I've got some degree of spasticity--but I attribute that to my mild CP, which might be making the diagnosis a bit more difficult.

Interesting comment about Dr. Martz. I'll have to check with his office before I go there.

Good to know the numbers. Better than I thought. I would have guessed 90-95% only live up to 3 years.

Now, I'm really insulted that you don't like my joke. I'll just have to try harder, or die trying.

Andy

 

[Meg1]

I'm pretty sure I was seen by an expert--I was referred to the University of Colorado Medical Center (Drs. Ringel, Quan, Neville) by three separate sources.

I don't see it in either of these lists:

http://www.alsa.org/community/article.cfm?id=639

http://www.alsa.org/community/article.cfm?id=638

You might want to poke around a little at the ALSA site where you can find, among many other things, info about survival rates:

http://www.alsa.org/


I had not focused on your CP diagnosis in my previous post, but I suspect that is making this diagnosis more difficult. That makes it even more important for you to be seen by someone very familiar with ALS.

 

[Al]

Hi Meg. I don't like some of the options with the software either but from what I understand we got it very reasonably and seeing as we get no funding for the site it will stay the same for now. We don't want to allow advertising to get funding and I can't see people paying to be members. David covers all the costs for the site out of his own pocket. I have no idea what it costs him per year. I just appreciate the fact he does it and allows me to help run things.
AL.

 

[Paty]

Hi Al:

I just want to let you know my perception of the message posted by Bogey: that goes this way bogey:

jennilee-- relax take it easy,

not many people like al he's truthful,patient,honest and very helpful

with is knowledge.bogey

I THINK YOU MISUNDERSTOOD HIM, HE'S REALLY SAYING THAT THERE AREN'T MANY PEOPLE LIKE YOU, THAT YOU ARE TRUTHFUL, PATIENT, HONEST AND VERY HELPFUL WITH YOUR KNOWLEDGE.

I think that as soon as he sees your inquiry he will explain this.

P.D. I PERSONALLY AM VERY THANKFUL TO YOU FOR ALL YOUR HELP AND FRIENDSHIP

Sincerely,

Paty
Husband's Caregiver DX 10.17.05
Baja California, México

 

[anne]

Al...I think you misunderstood bogey. I think he was saying "not too many people are like Al". Anne

 

[Al]

Sorry folks. I got a Private Message from Bogey and I explained to him that I was pretty sure I knew what he meant and I was pulling his leg. One more example of my warped sense of humor. Glad that someone else is paying attention though.
AL.