Am I a jerk?

[crystalkk]

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

sharon,
happy to here it's not als, what were you finally dianosed with?
Are you getting any treatment?
After hearing your story, It can give some of us positive thoughts.
I guess this is why it takes so long to get dianosed , they really need to be sure...

 

[Jeliota]

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.

You are correct.

 

[liz]

Axe grinding............never a good thing.............here or any where else..............very negative. JMHO.

 

[CindyM]

Hello everybody-I think emotions are running high all around tonight. I, for one, and trying to maintain some balance right now. I keep remembering two things that I have seen written on these posts: be sweet to each other since we need each other and do not cross bridges before we get to them. These two posts make sense to me. Seems worth remembering, especially on a night when I suspect we are all a little shaken. Cindy

 

[Jeliota]

The most important thing tonight is annemarie. I apologize is I offended anyone, particularly ltr.

 

[ltr]

Jeliota, you have the wrong idea, I don't have an axe to grind with you. It may have sounded that way because of the way I simply put the details, but that's not the case. And yes, I am very upset for my friend. Again, I am sorry if I upset you.

Liz, months ago I PM'd you and apologized that you were offended by my posts. You did not accept my apology, but that does not mean you should jump in whenever you think there is a good fight going. I won't fall into your scrapping tactics, so please, again I ask you, stop being an antagonizer.

 

[JessHart]

and

let's also remember that doctors are only human. They are usually trying to do the best they can with a disease that is little understood, rare, and highly variable from person to person.

 

[Jeliota]

Hey, I just realized I could edit my posts after all! For some reason I didn't think I could do that.

 

[CindyM]

Agreed, Jess. Good point. Let's get back to talking about why this disease is so hard to DX, please, everybody. We have our different viewpoints on many things but airing them here won't make any of us feel better. Cindy

PS Jeliota- I thing the ability to edit came back after we put in the new software. BTW, your name is very pretty. Is it your actual name? If so, your Mom picked a good one!

 

[ltr]

Oh my gosh, we posted practically on top of each other. Well, at least we have the same idea!

 

[CindyM]

How are you doing tonight, Leslie? I PM'd Jamie but I don't think he is online. I am about to turn in myself. 8PM is about the extent of my ability to remain awake and upright! :-D Cindy

 

[Jeliota]

Agreed, Jess. Good point. Let's get back to talking about why this disease is so hard to DX, please, everybody. We have our different viewpoints on many things but airing them here won't make any of us feel better. Cindy

PS Jeliota- I thing the ability to edit came back after we put in the new software. BTW, your name is very pretty. Is it your actual name? If so, your Mom picked a good one!

It's a mishmashed amalgamation of a pen name I used when I published a couple of short fiction pieces back in college. I had the strange idea that somehow being tied to a couple of short stories would forever damage my credibility in my chosen field--as though my own mediocrity in my chosen field wouldn't naturally speak for itself. Call it the idealistically brash ignorance of self-absorbed youth. :-D At least I'm no longer self-absorbed and young.

My actual name is Paul.

 

[CindyM]

Thanks Paul for the chuckle! I don't know why but I thought "Jeliota" was a woman's name. :-D LOL I had a good giggle over my assumptions! Cindy

 

[Jeliota]

Thanks Paul for the chuckle! I don't know why but I thought "Jeliota" was a woman's name. :-D LOL I had a good giggle over my assumptions! Cindy

You aren't the only one. Someone who will forever remain nameless propositioned me in a PM. Boy was he in for a surprise. I did volunteer to go ahead and do the dance of the seven veils, but he has so far declined.

 

[CindyM]

Now THAT I'd like to see! :-D Cindy