My Father's Diagnosis and Questions about Dr. Appel

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pplacl

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Hello Group,
I'm a new to the group, but here's a little bit of my story. My father was initially diagnosised about a month ago. It's basically a rule-out diagnosis right now. I'm taking my parents to Houston next week to see Dr. Appel at Methodist. Any information about him, what to expect, the clinic, etc. would be greatly appreciated!
My father appears to be progressing pretty quickly right now, which just has been heartbreaking. He's only 70 and never has had any health issues previously. Fortunately we moved back to our hometown last year prior to him developing any symptoms so we are able to help out.
Thanks for any information you may have about the ALS Clinic at Methodist, Dr. Appel, or just any thoughts regarding the disease.
 

CindyM

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Hi Pplacl- welcome to the group although I am sorry for the reason you have to be here. There is a lot of great information and support on this site so I am confident we will be able to help you with any questions that arise. Sorry to hear about your Dad. Cordially, Cindy
 

JAKE

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pplacl, I went to Houston and spent 2 days at the Methodist Neurological Insitute, in Nov. 2005. During those 2 days every Therapist you can imagine came in the room and
did their thing and I had a pulminary test done, along with the EMG testing, also they did a spinal tap, along with the normal strengthening test where they physically check the strength in your arms and legs. There was also a mental evaluation therapist that came in and spent about 3 hrs to see if i had lost my mind I suppose, in which only the patient can be in there. To be perfectly honest with you, I felt as though it was a routine formality they were putting me through. After the 2 days of testing, Dr. Appel finally comes in the room, for the first time, along with his team, of which most of them are interns, and reads the report of their findings. I may be wrong, but I left there basically feeling as though they didn't go out of their way to find what was wrong with me. They work out of a wing in the hospital. May God bless you and your dad.
 

Jamiet

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I went to Houston Methodist, i am still undiagnosed of whatever i got messing me up, but, basically, i am sicker than ever. I saw Dr. Appell's #2, Dr. Simpson. She has since released me, telling me i am clear neurologically, this is just after....determining that i have +5 relflexes, an abnormal EMG, a muscle biopsy they call "essentially normal"...that showed rare atrophic and denervated fibers... got a rippling tongue that twitches...

All in all, i got alot of stuff wrong, feel like crap and she released me. I even look bad, lost weight.

I feel the same as Jake....kind of routine and...well, they sent me home while i was sick.

I guess you can't blame them, they know very little about the brain, i guess they all do the best they can. They are all really nice people there, they were kind an courteous.

Well, good luck.

It seems our Louisiana crowd is growing quickly. I'm from Lafayette area.

You need to contact the ALS assn in Baton Rouge, Mrs. Dora / Mrs. Kelly will help you and your father there. Tell her i said for you to contact them.

rgds,

Jamie
 

Icanmanz

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Jamie, hi! Haven't seen you posting lately. I am saddened by the fact that you still feel bad, have started to look bad, and losing weight, and these docs released you? This is one thing I cannot understand, why would they release a person that is going forward with his illness, or whatever? They could have at least sent you someplace else! They sent you home, right? For what? So that you can become your own doctor? This is so unreal? I am not doubting you, don't get me wrong. It's these doctors! So what's next? Are you still with the lyme treatments? I think I have read that you are, but they are not helping, but to no avail. Am I right?

I hope that they get to the bottom of this, and I hope it's treatable. I have a long time friend, that has the same symptoms my son had, she is looking bad, has aged so much, is ready for a wheel chair, cannot walk without a cane, is constantly falling. She has been like this for quite a while, she went to Methodist, saw Quan or Appel, I do not recall which, anyway, they did nothing for her. They sent her home, rescheduled her for Feb. '08, I guess. In the meantime her illness is moving on, what's up with that? I cannot understand!

The best of luck to you and your family. Enjoy the holidays. I have been pretty busy trying to get in the Xmas spirit. I am getting there though! LOL You know what I love around Xmas? The Christmas carols! God bless you Jamie, this is far too long! I don't wanna get in trouble! LOL Bye, friend. Hugs to your babies!

Irma
 

Jamiet

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Treatments are not working, but the doc still seems positive.

I'll keep pressing forward. I'm beg. to loose conf. in what i hear about the dr's. It's ridiculous.

They are not doing much about ALS except diagnosed'ing people and sending them home. I guess if we had AIDS, it would be much different. It's ashame, we jump to help people that have made bad choices, not that it's particularly ones fault, but....with ALS...you don't choose or make a bad choice, it chooses you. There is not enough money in it for the drug companies to pay attention.
 

ilgal

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Don't know the doctors or clinics you go to but do know the feeling--is it abandonment or disinterest or whatever? I was diagnosed at ALS clinic but that seems to be all doctor is interested in doing. At 2nd visit tested again but docs really showed no interest is discussing prognosis or doing anything about my symptoms. I requested of the MDA rep who came in referrals to speech about voice synthesizer and to orthotist for hand brace and rep got doc's approval. But if I hadn't asked her (no time to ask MD; he was in and out too quick and busy talking to interns) I would have gotten nothing. I know I sound whiney but I felt so uncared for. Like why did I even take the time tio go to appt?

BUT what I wanted to offer on a positive note is the idea of getting involved in a clinical trial. I am in one now and it gives me the feeling of doing something positive. And I get more information about what's going on with me from the docs etc. involved with the study than I think I'll ever get at the ALS clinic.
 
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