Referred to Dr. S.H. Appel in Houston

[Shatzie]

My neurologist told me Monday that he thinks that I have ALS, but cannot give an official diagnosis because it is not in three limbs yet. He has referred me to Dr. S.H. Appel at the Baylor College of Medicine in Houston. I know that he is the head of the neurology department at Baylor and on the web I found multiple journal publications. Have any of you seen Dr. Appel or know anything else about him?

[Icanmanz]

Hi Shatzie, my late son was seen by Dr. Appel. I cannot comment on the doc, my son said nice things about him though. Good luck and God bless.

Irma

[Jamiet]

Dr. Appell is at Houston Methodist, not Baylor. I was supposed to see him, but i saw Dr. Simpson, who is his #2. While i was impressed with their facility and they are very professional people, i think, they didn't take me for what i was telling them, dismissed all my claims (including an abnormal EMG) as anxiety and they released me too early, told me with 110% certainty i didn't have ALS.

While that is reassuring for me, it did little to answer many questions, like the +5 reflexes, jaw jerk, tonge rippling they saw. I was quite puzzled a doctor would give a 110% certainty on a disease in which they have no definitive test for.

Dr. Harati is the head at Baylor, from what i know.

Please don't take me wrong, Dr. Appell came highly recommended, he is also on the MDA Board of Directors.

It was just my personal experience, but, i guess we can only expect doctors to go off of what we present.


Rgds,

Jamie

[Al]

I think sometimes we put more faith in a reputation than is justified on certain days. They're human just like us and can be preoccupied and appear or really are not listening to what we say. Many reasons for this such as marital, financial or any of the problems we as patients can have. I just hope I'm not there the day my doc is having a bad day. We have no way of telling, do we? Other than that nagging feeling that he can't be right, can he?
AL.

[mamaoftwo]

Hi Jamie - I knew you'd answer this one. How are you? I'm curious about the jaw jerk thing. How do you know you have it or does it take a neuro to test it. If your reflexes are 4+ (I believe the scale is 0-4 with 2+ considered normal, 3+brisk and 4+ brisk with sustained clonus - does that mean you have clonus too?
Any improvements at all since the treatments started? Thinking of you often.

[Jamiet]

Absolutely NO improvements.

Everything just seems a little worse each week. Twithcing is constant in legs and calves. Now in my palms.

I feel as if i'm run over by a frieght train every morning. so i went for a sleep study, the doctor checks me, tells me...hmmmmmm, your tongue doesn't look normal, it has teeth marks all over, that's not normal. Then he said, where are your tonsils? Have you ever taken them out? NOpe, never took them out, the've disappeared! Reality is setting in people, i just quit complaining so much.

I resched. a neuro appt, it's Feb 20th. My lyme dr said that it's a good idea and he wants me to have another EMG.


So the saga begins again. In the meantime...i'll make due.


Rgds,

Jamie

[mamaoftwo]

Jamie - that truly sucks! It would be so unfair for you to have gone through the ringer once, get spat out the other end and then get sent back!!! I still don't think it is ALS for you. Your muscle biopsy was not indicative of ALS and your EMGs weren't either, right. Why did they send you to an ENT?
Maybe you will just be like Cindy and never get a diagnosis. Hang in there. We are all thinking of you.

[mamaoftwo]

Sorry, just read that you saw a sleep doc not an ENT. My mistake. Not sure a sleep doc is qualified to comment on the appearance of your tongue, is he?

[Jamiet]

I will say, this lyme dr, is about one of the nicest, understanding and caring people i've ever met. He is doing everything in his power to fix me. We had a long discussion (he spends about 20 mintues each time with me talking....something most dr's never do now).....

He is unsure of the lyme, but is taking all of the other dr's info, my symptoms and making an informed guess. I told him i don't think it's all working, so he want's me to do some type of challenge to see if i react. Great...another Challenge. Woooohoooo.

I continue to be a research project.

It does just confirm that i am not toally nuts in what i am seeing also

sorry for changing the sub on your thread Shatzie.

Over and out!


Jamie

[Bobby C]

Jamie, I feel for you on the diagnosis problem (delay.) I felt frustrated because it took seven months to get a diagnosis that I am not sure the neuromuscular specialist is certain of. But I do think I am in good hands with a University Medical School neurologist. I believe the primary problem with University doctors is that they are "stretched too thin." My neuro is director of the ALS Clinic, the rehab program, a practicing physician, a professor of neurology and "ears" - what ever they call ear doctors these day. And presumably they need to publish. I know from surfing this forum that I am far better off than many of you who have physical pain, and are in advances stages of this dread disease. I believe I am truly blessed not to have one bit of pain, and a loving spouse who is coping with my situation as well as any one can. My prayers go out to all affected, patients and family.

[Icanmanz]

Hi Jamie! Hmmm, just read your post, and I was hoping it would be something positive. Jamie, don't forget you still have a friend here in Tomball, that is pulling for you, and pray that docs will deliver you "good news." Keep praying buddy! God bles!

Irma

[freddiesnetty]

Freddie also goes to Dr. Appel. I personally do not like his bedside manner...He basically looked and Freddie and told him You are down to weeks or months....Nothing positive...We now have home visits and that is Dr. Simpson...she is WONDERFUL. Him not so much....Oh well just an opinion.....Freddie did do the local Houston MDA telethon with his story, the MDA here is very helpful to us...

[Carolan]

You won't find anyone better than Dr. Appel. He is blunt but I think he still has a good bedside manner. The visit will take 2 1/2 days, and you will see him every morning. A resident will call a day or two before the appointment to go over all of your symptoms. Then you will probably see that same resident first thing at the appointment. He/she will brief Dr. Appel on everything (and there will be a slew of medical students following behind him), but listen carefully to make sure that everything is accurate. Feel free to jump in if you hear something that isn't correct or needs clarification. Then Dr. Appel will tell you what they will be looking for--not just ALS but other diseases that might be a possibility--and the goal during the next couple of days will be to rule out anything else. You will meet with a pulmonologist, a respiratory therapist who will perform an FVC test, therapists (physical, occupational, and speech) who will also perform diagnostic exams, and possibly a neuropsychologist. There might be others as well, depending on what all is being considered and how far along your progression is. Oh, and you'll have a new nerve conduction test and EMG. Be sure to take any test results that you already have, including MRI scans (the actual prints), biopsy slides, spinal tap results, etc. This will save you some time. You might also be referred to an overnight sleep lab to be assessed for bi-pap. You can do this on one of the nights of your visit down there.

They will be thorough, and they will listen to you. He is respectful and sensitive to the concerns of the patient, but like I said, he is rather blunt (more "East Coast" than "Southern," if you know what I mean--and I don't mean this negatively). He didn't try to predict how much time my mom has left. In fact, he carries around a little card that says "Only God Knows," which is his motto. He said that statistics can tell you generally what to expect, but that doesn't tell you what will happen to an individual--there are so many variables.

Other tips: Be sure to get there early. The registration process is a bit confusing--it's downstairs in a different part of the building from the work-up unit, and there isn't a real line to stand in. You'll see lots of other people with similar symptoms. Not all of them are ALS patients. Some have MG, MS, and a host of other diseases. Some will be on oxygen, some will be in wheelchairs, and the first day can seem a bit bleak--it was like catching a glimpse of an alternate universe. Dr. Appel's assistant is his wife, and she is really nice. So is Ella, who will schedule your appointment. His students worship him, and he is indeed brilliant. He likes to wear fun bowties. If you are diagnosed with a motor neuron disease, you will be able to go back for free follow-up visits every three months, and they will track your symptoms to help you manage the disease progression. They are doing a ton of research down there, and it's great that you get to see him. You will learn more about your body during that visit than in months of appointments with other doctors. Educate yourself in advance, write down your questions so that you don't forget anything, and don't be intimidated by the process. I would trust his diagnosis--he sees these diseases all the time--but if you have any doubts, he will address those. Just be sure to speak up, and it would be best to go with a family member or close friend who can take notes throughout the day. Oh, and be prepared for lots of down time between specialists. I think there was a TV in our room, but you might want to take a book or something as well.

If you have ALS, you will also meet with a Muscular Dystrophy Association representative at the end, and this will help you adjust to life after the diagnosis. They will give you a handbook that is clearly written for the lay-person, and you will be aware of the latest treatment options that are available. The Methodist ALS clinic is comprehensive, supportive, and aggressive in treating patients. Dr. Appel won't stand over your bedside crying with you, but he will be honest and not beat around the bush. This might be off-putting to some people, and his bluntness can catch people off-guard. He'll give you a list of vitamins and other supplements that he recommends, and then (like I said already) he will encourage you to come back down for follow-up appointments to help you track the progression of your disease.

After you leave the hospital...take a few days to process the news if it's bad, then start reading that manual. Think about whether you will want to be vented, get a PEG tube, etc. If the pulmonologist recommends bi-pap, definitely do that at night. They believe that if bi-pap is initiated early in the disease progression, it can extend your life, and they are currently doing research on this topic. Then after everything has sunk in, do something that you have always wanted to do. If you can travel, take a trip to an exotic location, or find something that is meaningful for you to do while you can. Oh, and eat lots of great food...in fact, eat *only* good food. Live each day to the fullest, and remember Dr. Appel's motto: "Only God Knows."

[markwayne]

Nice recap on Dr Appel's team, Carolan!

I just got back from his clinic there at the Methodist in Houston on Thursday. He was my second opinion. He confirmed my ALS diagnosis. He is a straight shooter and extremly professional. His staff took great care to insure comfort for my family and me. Hard to say that the experience was good, because of the circumstances. But they made every effort to make it as easy as possible to get help.

[Carolan]

Nice recap on Dr Appel's team, Carolan!

I just got back from his clinic there at the Methodist in Houston on Thursday. He was my second opinion. He confirmed my ALS diagnosis. He is a straight shooter and extremly professional. His staff took great care to insure comfort for my family and me. Hard to say that the experience was good, because of the circumstances. But they made every effort to make it as easy as possible to get help.

Well, I'm sorry to hear that your diagnosis isn't good, but at least you know what to expect now. The whole experience seemed surreal to me because I had no idea that this "other universe" existed, much less that we would be in the very middle of it. I am glad that your family was there with you, and I hope that you will take advantage of all the resources that the Methodist Hospital has to offer, either there in person or via the MDA representative. Dr. Appel isn't a dispenser of false hope, but he and his team will do everything they can to help your life be the best that it can be.

[bdyle]

Carolan, I think you described Dr. Appel and his staff very well. I started seeing him in Feb. 06, referred to him by a friend in the Louisiana ALS Chapter. I was dx in Dec. 05 by 2 other neuros that told me to go home and get my affairs in order. I don't know how to explain it but me and my family had a much better outlook on this disease after seeing him and his staff. We now go to Houston every 3 months for his clinic. I also seen his card, on my intial visit I ask him if he had any idea how much longer I would be able to walk and he pulled out the card that say's Only God Knows. God Bless

[Jamiet]

I'm hoping here no-one took my statement the wrong way. Maybe i am crazy after all...that would be good at this point, right yall?

Dr. Simpson, was probably one of the nicest dr's i've ever met. I've heard the same about Dr. Appell. They are the top ALS facility in the south, bet. the two Mayo clinics. I just hope the dr was right about me. My friend here has nothing but good things to say, so Shatzie, you are in good hands for sure. They did everything on me from A to Z and addressed all of my concerns. At the time, i didn't show enought to make her worry i guess....again...a good thing.

Anyway, most of you know there is not a bad bone in my body. I just can feel every bone...lol...

Bdyle, are you coming to the Lafayette Clinic anytime soon? I would like to meet you for lunch or just a quick hello? If you are and you find that you have a few extra minutes, let me buy lunch or just meet you so you can put a face with the name. PM me if needed.

Rgds,


Jamie

[CindyM]

hello Mark. Sorry to hear about the DX. I know you were hoping for something better. :cry: Cindy

[Shatzie]

Thanks for the info, especially Carolan for the details. I talked to Ella at Dr. Appel's yesterday and they had finally received all my records. So I have an appointment for Monday, February 4, 11 days away. I was really surprised they could get me in that soon, but one of the things I have been asking my friends to pray for was that I could get in ASAP and at least get the ball rolling.

[bdyle]

Shatzie, glad to see you got your appointment so quick. I pray that you will get a non ALS dx.

[Icanmanz]

Shatzie, I will keep you in my prayers!

Irma

[JAKE]

Shatzie,

Good luck with your visit to Dr. Appel. I went to him in Nov. of 2005 and went through the ordeal, which appeared to me to be a formality or routine of sorts. The 2 1/2 day deal was cut to 2 days due to Dr. Appel having to be in a meeting at MD Anderson. With the exception of a spinal tap and a pulminary test, I had went through the other main tests they ran before I went to Houston. What was strange to me was the fact that I did'nt see Dr. Appel till the 2 days was over and he came in the room with his team and read their findings. He said it appeared to him that I had ALS. I asked him what he had based his decision on and he said the nerve induction test and the strengthening test in my arms and legs. I found out through a general neurologist in Shreveport that Dr. Appel has officially diagnosed it as "probable" ALS on the paperwork. I did'nt personally feel as though they went out of their way to make sure there was'nt something else wrong with me when I went to Houston. Shatzie I hope things work out well for you and may God bless you.