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J Kathleen

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Hello all - I found this site last week and am hoping some of you have insight to share. My mother has been diagnosed with ALS by a doctor at UT Health Science Center in Houston (originally diagnosed with CIPD by another Neurologist in town). He has referred us to Methodist / Dr. Appel for a second opinion and continued care, primarily because UT does not currently have the comprehensive services that Methodist offers under one roof.

I have seen a few threads on Dr. Appel and the Clinic here, but they seem to date back to 2007 / 2008. Does anyone have any current experience to share? We have an appointment for the 3 days of tests to begin September 17 (frustrating it is so far away). Mom has already been through all the tests, but we understand why we need to go through them again.

I mostly want to prepare my parents (and myself) mentally for what we will encounter. We have also been told he can be a little rough; we don't need to be handled with kid gloves, but the recent diagnosis has, of course, put our family in a bit of an emotional crises.

Thank you in advance for any feedback.
 

glupavomomiche

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Hi J Kathleen,

I am familiar with the Methodist Neurological Institute and can tell you about it.

The testing they are setting your mom up for will take place in their Neurology Outpatient Workup Unit. It's in the West Pavilion building and they should send you some maps that tell you where to park and how to get over to the unit (it's different from the Neurological Institute office, which is in Smith Tower on the 8th Floor, and I'm sure you'll see a doctor at that office at some point). They do the blood tests, IV treatments, and EMGs there. MRI, CT, X-ray, Evoked Potentials, and other kinds of tests take place over at Methodist Hospital... be prepared for a VERY LONG WALK (as in, it takes about 15 minutes to walk from from West Pavilion over to radiology and/or neurophysiology in the hospital). Your mom will be assigned a bed in a double room... there is room for one visitor relatively comfortably... it gets crowded with two. There is a small lounge on that floor that has coffee, but when I say small, I mean small! It gets crowded fast. They will serve breakfast and lunch to patients only... you will want to take food with you as it is once again a VERY LONG WALK to the cafeteria. I have to say, the nurses are awesome and they'll make sure you know what you're supposed to be doing and when. Each day they give you a paper with your testing schedule.

Honestly... the repeating of tests is annoying and, quite frankly, unnecessary. Dr. Harati at Baylor (which is also in Smith Tower) CLAIMS that he will not repeat tests, but they ended up wanting me to repeat just about everything under the sun when I saw his partner, so I told them no thanks and didn't return.

In the end, I have stuck with Dr. Carlayne Jackson at University of Texas Health Science Center in San Antonio. She is FANTASTIC. She did not make me repeat any tests... HOWEVER, that is because they were done at Methodist. So I guess look on the bright side... it seems like everywhere (perhaps the one exception would be Mayo Clinic) accepts the tests from Methodist without question!

Good luck! Hope all goes well and let me know if you have any other questions!
 

WellsRuby

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Last November, my husband was diagnosed by Dr. Appel. The whole staff is wonderful and showed compassion through out the whole process. We have been to his clinic at Methodist for follow ups and have received lots of help and information. We live near by and that helps too. I have also learned so much from this forum and received a lot of support. I do not hesitate to ask questions here when one comes up. Good luck!
 

WellsRuby

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I lost my post but wanted to say that my husband uses Dr. Appel and his clinic. He was diagnosed last November and we have been to his clinic at Methodist for follow ups. He was very thorough and respectful and took the time to answer any questions that we had. They have a great staff at the clinic and very helpful. We live near which really helps.

I would like to mention that I have gained a lot of knowledge from this forum, too. Everyone has answered any questions I have had and you will feel like you are part of a big family here.
 

J Kathleen

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Thanks so much for the information, I really appreciate it. I contacted the local person in Houston with the ALS Association, who also recommended that we contact Baylor, as they might be able to get her in sooner. And, she advised, may not redo all the tests. If you (or anyone else reasing this) has any insight to Baylor as well, or one program / doctors vs the other, it would be most appreciated.

Thank you,

Jennifer
 

glupavomomiche

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It took me forever to get into Methodist as well... about 3 months. I got an appointment at Baylor within three weeks... it was the same with the appointment in San Antonio.

Baylor was... ok... honestly, I didn't like Dr. Phan (Dr. Harati's partner) AT ALL. While I do appreciate the fact that I had a 3 hour appointment with her, she was very confrontational in taking my history, she is not at all gentle in her examinations, and her 2-hour explanation of ALS (you know, the speech you get at diagnosis) was not what I would call caring and sympathetic. After all that talking, she was very wishy-washy about it being ALS based simply on my age, and that was when she started wanting to repeat tests from Methodist, which I refused to do. I wish I could say that was just my personal opinion and experience, but I know another family who was with Dr. Harati and they had a similar experience when seeing Dr. Phan.

Honestly, in my opinion... you might want to consider San Antonio. The clinics at Methodist and Baylor are large... there is more than one neurologist, you never know who you will see on ALS Clinic day, and they see over 20 people on clinic day and it gets hectic. Getting downtown to the medical center and dealing with their parking is a nightmare. While the clinic coordinator at both clinics are very nice, the other people you tend to get on the phone or have to deal with through the hospital are so freakin' rude and disorganized. Both are bad about not sending test results to your GP and not communicating well with them at all.

San Antonio is a whole other ball game. The medical district in SA is spread out and easy to get around. No real traffic problems. The MARC (building where Dr. Jackson is) has it's own parking garage and there is a Quest Lab and Pharamacy on site so you get your tests and what you are prescribed right away. The staff of the clinic and entire building are all nice and helpful. Dr. Jackson is the ONLY neuro... you will never see a different neuro on clinic day. She only see 5-8 patients on clinic day. Any time my GP or local neuro has a problem, she will call them back and talk to them that day. I have had some issues at home and she even answered my emails on weekends!

Anyways, if you don't mind the drive... I HIGHLY recommend that you give them a call! My GPs office sent my file over with a request for an appointment and I got a call with the appointment that same day!
 

glupavomomiche

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I answered again, but it went to mod er at ion... check back for it in a bit!
 
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