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lisa1215

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I don't know- maybe I am.. I have watched my peroneal muscle completely atrophy and disappear in the last 2 years, I started having fasics in my legs and they have progressed to EVERY part of my body in the last 8 months, I am only 36 years old and I have had 2 EMG's that strongly suggest ALS (per the Docs) in my thoracic paraspinals and cervical muscles and I have never had a physician say "You DON"T have ALS"' Every 3 month appt has shown some progression. It makes me so angry and jealous there are people hearing from the Dr. that they do not have ALS and still think they do..Maybe I am channeling a little Meg1 but if you have had at least 1 or 2 refutable docs say you don't have ALS- then feel freakin lucky and move on! My last appointment was awful- the Doc could not rule out ALS for me, and I have 2 year old twin boys. Most other diagnosis have been ruled out..I am still waiting and hoping whatever is going on will stop, and it hasn't. Sorry if I am being a total ass-it just makes me so angry! If your Dr cannot find ALS-then please be rest assured you probably don't have it! Again- if I have been a jerk I apologize I was just hoping the Doc would give me better news this time around.
 

cheryilyn

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No you are not a jerk. I think you have valid feelings about this.
 

liz

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Nope, definitely not a jerk. To quote a PALS buddy of mine, "if the docs told me I didn't have ALS, you'd see nothing but my skid marks as I beat it off this forum". :-D
 

CindyM

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Hi Lisa- you are definately not a jerk. People who long for an answer-any answer- are expressing valid concerns but as you so rightly point out, be careful what you wish for.

Plus it seems perfectly reasonable to looking at the certainity of your DX, applying it to your future, and comparing how you feel now to how you felt when you just suspected you were sick.

I like to tell PALS not to lose hope. Quadbliss was DX'd when his daughter was tiny and now he is a grandfather. I also try to tell myself and every other un-DX'd that worry and concern will not make the DX come any faster, it is just wasting time that we have right now to enjoy our relatively good health. At the end of the day, though, people have to come to their own conclusions. We want people to feel better, emotionally, but that understanding and skill must come from within. JMO. Cindy
 

ltr

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Lisa - you definitely are not a jerk! Cindy has the right idea, that some may want for an answer, any answer. I see what you are saying too. Some won't look down other avenues and just keep going back to als. It's too bad these neuromuscular illnesses aren't easier to diagnose, so that many of these sick people could move on and stop obsessing with the thought of having als. Actually your first sentence about your peroneal muscle and fascic's is exactly the kind of thing that keeps others on this forum. Many have similar symptoms and feel the docs are missing something. I think it's hard for all of us on here, since we don't walk in each others shoes and have no idea how ill the other is feeling, that's how I try to look at it. :)
 

duplinwino

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BTW, what happened to Meg?

I think your feelings are valid as well.
 

liz

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Meg is alive and presumably well given her slow progression. I see her posting on other forums.
 

JessHart

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and

Hi liz. I would also like to add that I think people are losing in faith in doctors in general in this country... well, really the medical industy as a whole. It used to be that everyone just accepted what docs said with blind faith but not so much anymore. Especially with the internet around, we are armed with more knowledge about possible diagnosed, and also with more stories about wrong diagnosed by doctors.

I actually just heard a doctor say - no joke- that it is not a doctor's responsibility to research rare diseases, that the patients and their families had to take some responsibility for that because doctors are so busy. What kind of carp is that? And this is in response to a 4 year old girl who was almost dead because the doc didn't have her blood sugar checked. Her parents were watching her die and found on the internet that the typhoid she had could cause diabetes. She would have died if they didn't have access to the internet. Mind boggling.

So, I hear you and think your words are very valid. And you have really helped me to realize how important it is to let go of my concern for my sister's undiagnosed symptoms. But I really think what you are seeing is that other people trust people who have been there more than they trust their docs, perhaps rightly so at times.
 

JessHart

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oops

I meant to direct that to lisa, not liz.
 

comfortable with ALS

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look wahat happened to our derar friend annmarie

Lisa you are not a jerk at all. But you have to understand where iam coming from look what just happened to Annmarie she was told no als and look now she probabbly does. So you canat believe all your docs especially if your having the symptoms thanks jenny
 

comfortable with ALS

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misdiagnosed
Hello everyone:
I just wanted to write a note and thank everyone that has been supportive over the past 7 months when I was given the ALS diagnosis.
I went to a new hospital and new doctor and was diagnosed as not having ALS but instead an auto immune connective tissue disease. I am still in shock that my nuero gave up and gave me that diagnosis. I asked them if everything had been checked because after all the research on being on this site, I did not think I had it. Of course, my doctors just figured it was denial. I changed my life in those 7 months getting ready. I quit my job, sent my grandchildren back to their mother after raising them for 11 years, made arrangements to send my MR daughter to a residential home and prepared my will and almost sold my house.
I read over and over again on this site that you should always get a 2nd or 3rd opinion and I'm so glad I did.
This scare has taught me a lesson and I'm not going to forget about those who do have ALS and how little people know about this disease.
So bless all of you and thank you again for all the support you showed me\
Sharon
 

Jeliota

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Lisa you are not a jerk at all. But you have to understand where iam coming from look what just happened to Annmarie she was told no als and look now she probabbly does. So you canat believe all your docs especially if your having the symptoms thanks jenny


scared, annmarie had positive babinski, brisk reflexes, a dirty emg, atrophy, etc. she had a lousy initial neurologist who put her through an unimaginable period of suffering just to arrive at the worst possible diagnosis.

annmarie is not the type of poster Lisa is talking about.

Lisa's not a jerk, but I am. If I had ALS, I'd never read this "Do I have als?" forum. I would die of a stroke long before the ALS could get me.
 

ltr

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Hi Jeliota - Annmarie DID NOT have a dirty EMG (for ALS) and on her last exam she did NOT have a Babinski sign. These are all new. She also has had several neurologists, not just one lousy neuro. And there have been times that posters have referred to her as, how can I say this, overreacting. I don't know if Lisa had her specifically in mind with this thread, but there have been threads referring to Annmarie in the same light as Lisa's post. I don't think any of us have a right to judge the members of this forum, specifically because this is how it can turn out and the emotional wear and tear that our misjudgments can cause, well, we can't take that back. JMO.
 

CindyM

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I think doctors are well, technical and scientific so if they can't make clinical observations then they say "no ALS." But maybe what this really means is "not right now." I think yoyu have to wait until the symptoms bump up to the point where they can be seen by the naked eye. This is what must have happened to Annmarie. It is all jsut so sad. Cindy
 

ltr

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Cindy, I agree with what you are saying, but things haven't really changed that much in the last couple of weeks since Annmarie was seen by her neuro. And Dr. Simmons made his diagnosis with the naked eye (his exam). This situation will probably scare some people and it will be unnecessary for some of them. I feel so bad because this is what Annmarie has been afraid of all along.....being the rare, atypical patient. Or is it really all that rare?
 
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