ALS CLinic SW Louisiana

[Blessed1]

ALS CLinic SW Louisiana or SE Texas

I believe I my wife needs a second opinion and that she probably needs to be seen by someone @ an ALS clinic. We have asked her general doctor to get her a referral for a second opinion.

We are a few hours drive from Houston, TX and Lafayette, LA
I have searched and there are some clinics in both places.

Does anyone have experience with anyone in these places?

My wife was given a differential diagnosis of PLS 6 months ago from a local neurologist who specializes in Motor Neuron Diseases. The neurologist is very young and this is his first medical practice.

My wife's primary doctor who is extremely experienced and really knows what he is doing told us a couple of days ago that he isn't convinced that this isn't ALS, and from what we can tell doesn't trust her neurologist.

We saw her neurologist yesterday and he still thinks that it is PLS and no signs of ALS, and said she may spend the rest of her life having a differential diagnosis. He also said he didn't see much difference from where she was 6 months ago. He said she has a loss of functionality but not a loss of strength.

I definitely can tell a difference from where she was 6 months ago,

So...we are looking for clarification on what is going on with her. We don't care what it is called, we just want to know with certainty what we are dealing with.

 

[Blessed1]

I am new here.... if this should have been posted somewhere else, please move it and let me know.

 

[ShiftKicker]

Nope- you posted in the right place. Sometimes, if there are a lot of posts all at once, a new one might get missed.

While I can't speak to ALS clinics in the States, I do know a bit about waiting, an unclear diagnosis and doctors that can't give an answer. It's small consolation, I'm sure, but sometimes it can take a couple of years to have a firm diagnosis. Also small consolation to be told "Good news, it's slow progressing, whatever it is." I empathize with you.

If you are needing a specific diagnosis for insurance purposes, perhaps someone here can chime in about what to ask for when seeing a physician. I know that there is an understanding with doctors that a diagnostic code is needed in order to access insurance and pension benefits.

Fiona

 

[Nikki J]

Houston methodist has been recommended by members in the past. I believe they have a multi day protocol for evaluation of MND. If I were choosing between the 2 locations I would go there. I don't know anything about Lafayette either way so would go with the place about which I have heard good things

 

[Blessed1]

Thanks for your reply.

We don't need a specific diagnosis for insurance purposes. Just what we are looking for is clarity. we just need an expert who can if possible say what we are dealing with, so we can plan and equip ourselves for the future. What I am hoping and praying for is that an expert can see her and find another treatable cause for her problems besides PLS or ALS.

Like most people here she has been on a diagnostic roller-coaster for several years.

Whatever it is, it is slow progressing. She has been symptomatic since 2009. Just alot worse now than back then.

I did find a coincidence, since she started having problems she has had anesthesia for some various surgeries/procedures.... and each time for varying lengths of time all of her symptoms improved. Less and less each time, but an improvement. We had told Drs about this and nobody ever thought that was significant. Though my searching I have seen reports of anesthesia being temporarily therapeutic for people with PLS.

 

[Blessed1]

Thanks for the information.... We will take that into consideration and let her doctor know.

 

[lgelb]

Hi, Blessed, the experiences of our members who have posted re NOLA and Lafayette have, I believe, suggested that those might not be best for getting our wife the definitive dx that you deserve. I would agree w/ either Baylor or Methodist in Houston.

Best,
Laurie

 

[Blessed1]

Thank you, I couldn't find anything about the clinic in Lafayette. I have let my wife's doctors office know about Dr. Appel @ Methodist in Houston. But told the nurse to get her where ever he thinks she would get the best care and diagnosis, we don't care how far we have to drive. My wife's general doctor is as far as I am concerned the best gp in this area. He is the head of a teaching medical practice that only has doctors and residents. Cannot say enough good things about him..

Will come back and update here when something new happens. Thank you all for your time.

 

[Blessed1]

Well we heard from my wife's doctor on the 20th of last month and they are referring her to be seen by Dr. Appel @ Methodist.

So far haven't heard anything back from Methodist hospital. How long does it take to get an appointment there?

---

Nevermind.... from searching the forums... it can apparently take a while..

 

[KimT]

Don't hesitate to call them, fax them all the records, make friends with the people setting appointments. When I got in at Johns Hopkins I was told it would take several months. I called, sent records, called back and had an appointment in three weeks. Same with Mayo Clinic. I was given an appointment to follow up on my EMG a month later. I called the doctor's nurse and she had it changed for the same week. Persistence pays off, I've found.

 

[Blessed1]

Thank you!

I called them today and they didn't have any record of my wife, her doctor must have sent the referral to wrong place or something. If I hadn't called we would just still be waiting. So we are seeing her regular doctor tomorrow and will hopefully get this referral process going.

I have pushed things before about getting her in somewhere, and they rushed to get her in, squeezed her into the schedule, and it was just a mess. Whole doctor trip might as well have been run by the keystone cops.

I never know what to do with any of this any more, so we where just trying to be patient.

On a side note are there any inexpensive / safe / close places to stay while in Houston for the visit. Lady I spoke with @ Methodist said the visit is handled as a 2 1/2 day outpatient procedure.

 

[Grace89]

Hello Neighbor! I am in Mississippi. I go to The University of Mississippi for clinic (they were my second confirmed diagnosis). I chose to pursue a third diagnosis at Houston Methodist. I see Dr Pleitez. She is amazing!! The entire Neurology dept at Houston Methodist is great. The only downfall and frustrating experience I have had was the initial appointment and getting the referral. They have a patient liaison team that will help you somewhat. I had to call multiple times and stay on top of getting records sent. They have certain things that they want, no more and no less. There were a few things I had not had done yet and I chose to let them perform them. They have a certain process for diagnosis that takes a few days. Unfortunately I left not knowing anything until a few weeks later for a returned trip and results.
I am not sure how soon you could see Dr Appel. I was also wanting to see him but the wait was longer. I agreed to see the first available Dr on his team. I was desperate to get there but I'm glad I was given Dr Pleitez. All of the Drs work closely and study with Dr Appel so I don't think you would go wrong by seeing any of them. Your wife's case will likely be discussed and reviewed with the entire team.

If I can be of any assistance or if you have any questions please let me know!

 

[Texas Quilter]

Re: ALS CLinic SW Louisiana or SE Texas

I was diagnosed at Houston Methodist Hospital by Dr Stanley Appel & his group. My neuro referred me there. They'll want all your doctor's notes, results of your tests, etc and then will set up an appointment with you. Its a 3 day, outpatient "stay" where you are seen by a few neurologists, PT, OT, Speech, Dietician, Social Worker, Pulmonologist, etc --- plus some testing. After my diagnosis, it was recommended that I come to their clinic every 3 months. I found that to be helpful, even though the trip is a little over 700 miles for us. Lately, they have been extending some patients out for 4, 5 or 6 months, depending upon their needs (decline!). I highly recommend this team & glad to answer any other questions you may have about them. ---Dianne

 

[lgelb]

Here is one map of nearby hotels that may have special TMC (Texas Medical Center) rates, which you are entitled to. Many also have shuttles and there is a train depending on where you stay (stops are shown on map). Not sure what your definition of "cheap" is but should be able to get in <$100.

 

[Blessed1]

Thank you all for taking the time to reply. You ALL have been very helpful. I really do appreciate it.

I will update this thread as I have news, and possibly more questions.