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lhagsjr

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Well, as most of you know I was dismissed by one of the Top ALS docs in the Northeast US on August 28. When dismissing me, he offered to send me to another doc for a 2nd opinion.(Really a 3rd Opinion, my local neuro referred me to him). I didnt take him up on his offer until this week. I made an appointment today, and got it for get it, this coming Tuesday(23rd). Dr. Marinos Dalakas from Jefferson Hospital here in Philadelphia. Does anyone know anything about him? My basics 3 symptoms still are present:

1.) Atrophy: most concerning to me. (although all docs have disputed it)

2.) Twitching: frequency has actually lowered slightly.

3.) Popping and cracking of all joints(is this related? I dunno. Could muscle loss cause this? I dunno)

So, anyway. I dont expect much to come of this appointment as it actually feels like a step down as from as the level of the Dr. Oh well, have to try to get some kind of answer. Honestly, I think its ALS but hopefully they find something else(EVENTUALLY)....

~Lou
 

CindyM

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Hey lou. I hope it is something else too. But even if it turns out the Docs are wrong and your instincts are right, knowing now vs later will not accomplish much to my way of thinking. JMO Cindy
 

ltr

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Cindy said knowing now versus later won't accomplish much.....Except getting disability and setting yourself up for the future, registering with MDA, getting appliances, helping your family understand.....the list goes on as to why it is very important to know....unless, of course, you are independently wealthy and your family isn't giving you any grief because they say your ok.

I wish you all the luck in getting to the bottom of your illness. You deserve a break and to get some treatment.
 

CindyM

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Well, there is that. My family gives me grief for complaining but then again I don't have a lot of patience for their complaining either. LOL if it comes to that, I'll just have "I told you I was sick" engraved on my tomestone! :-D

And even with a DX I'd still work, with role models like Frizzell and Liz and a host of others why give up a job I like? I do concede that if I get to the place where I need medical equipment then I will need a DX but I assume if I get to the place where I can't stand on my own 2 feet somebody will know what is wrong.

And I am getting my affairs in order, just in case. My husband's, too. He is not sick but nobody gauranteed him a long life either. :wink:
 

lhagsjr

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I agree with the both of you actually...

1.) I have taken Cindy's approach the last few weeks. Everyday without a DX of ALS is actually a good day. Mentally I have been a little bit better.

2.) However, I also agree with Leslie. I need a DX of something soon. Im tired of trying to explain myself to my wife, friends, family, and employer...
 

ltr

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Yes, I agree with both of us too. I spent yesterday not moving too much off from the loveseat and when I woke up extremely early this am because of the ungodly twitching I told myself that I was going to get out of bed in a good mood, that there are plenty of people still functioning who have als and that I had to keep going, whether it's polymyositis or als. Although there is no way I would be able to keep a job at this point, role models or not. I'm with Mike (Quadbliss) when it comes to job stressors making things worse. But, forcing the happy mood worked out pretty well, though, the occasional cramp and tons of twitching did make me grimace a few times. Like I have said before, I'm just hoping for treatment, Not until they tell me it is als will I give up that hope...and maybe not even then! Unfortunately, we have to get a diagnosis we would have rather skipped hearing if it is als instead of something treatable. Anyway, I hope the best for all of us. And Lou, sometimes the docs who aren't titled "top" are better because they can take a step back and notice atypical patient's. Good luck.
 

Jamiet

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Well, i hope you three amigos don't mind me cutting in on your thread...lol

How are you Lou. Well, we are close in nature... No diagnosed, but something is really wrong here.

I've just recently discovered i have a positive Hoffmans sign. It was really bad tonight, i test myself, its easy to do it yourself and i definitly have it. That is one of the "kickers" for either ALS or MS, nothing else, NOTHING. We've ruled out MS..... I have ALS i'm sure, but, i wont give up.

I need to make another neuro appt. They will see it next time, for sure. There is absolutely no doubt in my mind. I have applied for a life insurance increase, this lyme disease diagnosed has allowed this and it looks they may accept, we'll see.

So, i see myself widdling away here, i think we are on a different course. I am getting skinny, my arms are are looking thin, my shoes, well, i can shake them off. My legs feel loose in my jeans and now, they are all telling me i'm loosing my butt........ My face is beginning to have the "sunk in" look.

So, about this time next year, i'll be a pencil

Well, Lou, what are your issues, like, do you have atrophy of the tongue? What about your feet, do your shoes fit you? Your calves, do they have dents whne you stand on them. How do your muscles feel? Do they feel knotty and stringy?

Well, keep in touch..

rgds,

jamie
 

hopingforthebest

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getting a diagnosed

Dear Lou

Wishing you the best with you Jefferson visit.

We have discussed before that my husband has been diagnosed at Penn by Dr. Leo McCluskey with PMA, progressive muscular atrophy.

Dr. McCluskey is very very good and I think if he said you do not have ALS you can take that to the bank. He sees thousands of patients and directly takes part in his patient's EMG testing. His examinations are very very extensive and his bedside manner is great. I work for a neurosurgeon and have been in the medical field for many years and I have been impressed with Dr. McCluskey and recommend him highly. Hope this helps you. Only wish that he could be wrong with my husband's diagnosed. We are going to John Hopkins Medical Center for 5 hour appointment end of October for 3rd opinion and another EMG.

Hope the Jefferson group will give you a definitive treatable diagnosis!

Good luck and I am sure you will keep us posted.
 

Icanmanz

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ltr, this is exactly what I am talking about! I can't, for the life of me, why this damn disease is so hard to detect! Are these docs different or what? When my son when to the neuro here in Houston (Dr. Appel) he told him right off the bat what it was. Do you think that my son could have had something else other than ALS, as you see I was so ignorant to this damn disease. My son was started on everything immediately, I am talking about disability, the do's and don'ts about als, the medication, getting him started on Rilutek, and God knows what else. Here I am reading about these folks going to the doc, and the docs are saying "no als," "no als," and yet they are having the very symptoms my son had. WHAT IS GOING ON? Do you really think my son could have had a chance, or what? I am so angry at myself, I feel like we failed him! We could have taken him to another damn doc, instead of him walking out of that damn clinic with an death sentence!

Irma
 

Icanmanz

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Jamie, I am so sorry to hear that you are still having problems, and still undiagnosed'ed. I hope it is no als, but let's say, if it is, why are these docs letting it go this far, then diagnosed you later, and tell you, "Sorry, it is als." Okay-------I read in your post that you are losing a lot of weight. My son lost a tremendous amount of weight. He got, like you said, pencil thin. That sickened me! I went through hell myself! My son was a looker, and he always wanted to look his best, but you should have seen hem at the end. My son could not, yes, COULD NOT even stand up. HE HAD NO STRENGTH LEFT! Why are these docs not getting alarmed about your weight loss? What's gonna happen, if it turns out to be als, and you will be needing a peg? Gpd, I hate this disease. I hate this disease, and I hate the way some of these damn docs drag their damn feet! God bless you all!

Irma
 

lhagsjr

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Jamie & Everyone...

Thanks for all your comments. For the woman who praised Dr McCluskey. Believe me I hear what you are saying, he is the only reason why im not 100% sure I have ALS. He really is one of the best of the best in this country. He also personally did my EMG. For him to dismiss me is the only good thing I have going for me. BUT, something is very very wrong.

Jamie, my symptoms are the same. By the way, its been about one year now since it all started. My 3 symtoms are:

1.) Atrophy: most prominent in quads, calves, shoulders, upper arms, & lower arms

2.) shoulder instability

3.) Twitching: frequency has actually lessened.

Im starting over with this doctor from Jefferson who is actually a step down but maybe he will listen more and try to fix me more then try to tell me what i dont have.
 
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