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IluvNY

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Happy Easter & Passover!

It's been almost a year since my partner was diagnosed. Since then he has lost a great deal of muscle in both legs & arms. He can still walk (slowly) with the walker and his power chair arrived last week. He went for a 2nd opinion at the ALS clinic in NJ 2 weeks ago because considering a devastating disease like this, who wouldn't want a 2nd opinion by "specialists". Our hopes were high based on what we read on what to expect at the clinic - "a friendly team of experts" "a caring staff", blah, blah. Well we spent 4.5 hours at the ALS clinic of which only 20 mins was with a Dr. The remaining time was spent waiting. The ALS "expert" looked at my boyfriend's EMG written reports/results and asked him "so are you feeling better or worst" he then responded - "I agree with these results" My b/f said that's it, he said yes - make an appointment to come back in 3 months. So disappointing, the roundtrip drive was approximately 3 months and we waited 6 weeks for this!

For those of you being treated at an ALS clinic, what are the advantages, if any, compared to seeing 1 doctor (neurologist). Although I am not a fan of his present Dr, what can other Dr's or Clinics do for him that he can't do? Is it worth the 3 hour drive every 3 months to see a "team" of specialists. or a waste of time? If he isn't a patient at an ALS clinic, will he notified of upcoming clinical trials? With his current neurologist, he has been approved for 2 placenta stem cell therapy treatments, Dr hope it will be soon. I do know that at the clinic, he will have access to dietician, PT & OT (I think). At the neurolist, he goes 1/mo - do a few stretches and that's it - also a waste of time. Why even go to the Dr. period? Do those patients that attend ALS clinic live longer than those who don't? He was so disappointed with the lack of attention/care that he doesn't plan to return to the clinic but I can convince him to, if it will eventually be worth his time.

Thank you all for your input.
 
I understand your and your partner's frustration and I'm sorry you're having such a hard time. I have only recently started going to an ALS clinic and was just seeing my local neurologist before. I have to say, if you can find a good clinic, it's worth it. There were two clinics I tried that were only 2 hours from where I live, and neither of those worked for me for various reasons. The clinic I go to now and love is 5 1/2 hours away! My suggestion is to try a different clinic if there is another one in driving distance. There's nothing wrong with shopping around to find what works for you. It was my local neurologist who requested I get hooked up with a clinic, but he is still very involved in my care as well. Things do get better, just keep trying!

~ Sarah
 
Help me get this timeline correct. In one of your prior posts you mentioned an ALS clinic date of 3/19. Here you say you wasted 4.5 hours at the clinic plus 3 hours driving. I’m guessing you drove 1.5 hours each way. So 4.5 hours plus 1.5 hours equals 6 hours – you’ll see why this is important in a moment, and here is where I get confused. On 3/19 you posted messages at 1:42PM, 1:53PM and 2:18PM and nothing to indicate you are at that moment at the clinic. I guess your clinic appointment could have been at 7AM giving you enough time for the visit, the travel and the memory loss of the last six hours in order to post at 1:42PM. Or the appointment was at 4PM to allow 1.5 hours travel after your 2:18PM post, but that means you left the clinic at 8:30PM. Seems to me the people working at that clinic are putting in some long, long days. Or did I just get the dates mixed up?
 
After going to a second Neurologist for my second opinion I wasn't happy with my experience. She was supposed to be the most experienced with ALS in Colorado but was way too busy to answer my questions or even have her assistant return any my or my husband's calls until my hub pitched a terrible fit. So the search for a good and relatively close neurologist was on. I just asked PALS and CALS at my ALS Support Group meeting and was referred to a great Neuro and Pulmo by a PALS friend. I'm very happy with my Dr.s now. Also if you call your local ALSA they may be able to refer you to someone that you like.
 
Seaside, you crack me up.. Thank you for your research skills.

I like the ALS clinical approach of seeing different people. Nutrition, respiration, physical therapist, doctor, social therapist.
I drive about an hour and a half to my clinic. It is mostly a personal choice, bedside manner type of thing for me. I like to be informed about options available in equipment and treatments.
 
Help me get this timeline correct. In one of your prior posts you mentioned an ALS clinic date of 3/19. Here you say you wasted 4.5 hours at the clinic plus 3 hours driving. I’m guessing you drove 1.5 hours each way. So 4.5 hours plus 1.5 hours equals 6 hours – you’ll see why this is important in a moment, and here is where I get confused. On 3/19 you posted messages at 1:42PM, 1:53PM and 2:18PM and nothing to indicate you are at that moment at the clinic. I guess your clinic appointment could have been at 7AM giving you enough time for the visit, the travel and the memory loss of the last six hours in order to post at 1:42PM. Or the appointment was at 4PM to allow 1.5 hours travel after your 2:18PM post, but that means you left the clinic at 8:30PM. Seems to me the people working at that clinic are putting in some long, long days. Or did I just get the dates mixed up?

Rather than researching my prior posts, checking on timelines, creating math problems, etc, it would have been more beneficial to me for you to offer your suggestion/advice to the REAL question at hand. I'm not sure what your motivation is, but I do know it's not coming from a good place.
 
I understand your and your partner's frustration and I'm sorry you're having such a hard time. I have only recently started going to an ALS clinic and was just seeing my local neurologist before. I have to say, if you can find a good clinic, it's worth it. There were two clinics I tried that were only 2 hours from where I live, and neither of those worked for me for various reasons. The clinic I go to now and love is 5 1/2 hours away! My suggestion is to try a different clinic if there is another one in driving distance. There's nothing wrong with shopping around to find what works for you. It was my local neurologist who requested I get hooked up with a clinic, but he is still very involved in my care as well. Things do get better, just keep trying!

~ Sarah

Hi Sarah, I actually thought about suggesting he give it a 2nd chance and also he plans to check out the ALS clinic in NY. You drive 5.5 hours - every 3 months? If the care is good then of course it's worth it. But you know what they say - 1st impressions.....and our first impression of the "Specialty" clinic was not good. Thank you for your encouraging words, we are remaining hopeful and not giving up! All the best to you!
 
For those of you being treated at an ALS clinic, what are the advantages, if any, compared to seeing 1 doctor (neurologist).

Can't really see any real advantages in sticking with the hometown neuro except convenience -- avoiding the long drive to the clinic. But once you have to start driving around locally to the pulmonologist and the PT and the OT and the dietician and psychologist/psychiatrist and speech-language pathologist for their evaluations, you might find the 3.5 roundtrip to the clinic more efficient.

Although I am not a fan of his present Dr, what can other Dr's or Clinics do for him that he can't do? Is it worth the 3 hour drive every 3 months to see a "team" of specialists. or a waste of time?

See above answer. Your local neuro can prescribe anything that that your partner needs, but he will farm out the work to the specialists via referrals and the people that he refers you to might not have the slightest inkling about dealing with a person with ALS. That is one of the biggest and most dangerous problems we PALS face -- inexperienced medical care providers. If, on the other hand, you are seeing these types of professionals at an ALS clinic, they deal with PALS regularly. They won't need to go look up drug interactions when prescribing medicines that your partner needs. They'll know what DME vendors to call for cough assists and BiPAPs and suction machines.

If he isn't a patient at an ALS clinic, will he notified of upcoming clinical trials? With his current neurologist, he has been approved for 2 placenta stem cell therapy treatments, Dr hope it will be soon.

I presume that he's been approved for these trials because his current neuro is involved in those trials. Of course, you have checked out the companies behind these trials and found them reputable, haven't you? And you do know that in using placental/cord blood stem cells will require your partner to be given immunosuppressive drugs so that his immune system won't kill off the implanted stem cells before they can get to where they need to go and transform into motor neurons.

As to hearing about other clinical trials, it depends on how closely your local neuro follows the field. Of course, once you enter the stem cell trial, you won't be eligible for other trials, so it won't matter whether or not you hear about them.

Of course, if your local neuro had done the right thing and referred you to an ALS clinic then, your partner might have qualified for trials with a couple of promising new drugs. It took a major effort in the online ALS community to get both of those trials filled last year. It's a shame your local neuro didn't hear about those.

I do know that at the clinic, he will have access to dietician, PT & OT (I think). At the neurolist, he goes 1/mo - do a few stretches and that's it - also a waste of time. Why even go to the Dr. period?

There does come a time when going to a neurologist is pretty well useless -- agreed. Your partner hasn't reached that point yet. And better the ALS clinic neuro than your local neuro, if what you describe is what he does.

Do those patients that attend ALS clinic live longer than those who don't?

Yes, they do, for the most part. Nobody can predict with absolute certainty what will happen with an individual patient, but the multidisciplinary clinic approach does increase life expectancy, on average.

Good luck to both of you.
 
Is there perhaps more than one doctor? In time, he's going to need the respiratiory specialists, etc, unless your own neuro is very well-versed in the treatment of MND.

For instance at the clinic I went to --the doctor spent a long time with me--but others at the same clinic with another doctor spent very little time with them.
 
IluvNY, we went to the Emory ALS Clinic for about 5 years. The people were great, but it became too much of a burden for both of us to travel and then spend the lengthy wait seeing each specialist. But, you must understand that a good ALS clinic will be able to help y'all with obtaining needed equipment, as most medical professionals that don't specialize in ALS are unfamiliar with a pALS timeline for said equipment.

Good luck to you in finding a clinic y'all are satisfied with.
 
I've read in a couple sources where various research has shown improved patient outcomes (meaning greater longevity and high quality of life ratings) for those who go to ALS clinics as opposed to single neurologists. It makes sense when you think about it. ALS, while known by many in healthcare, is sorely misunderstood I think as far as the specifics of what is helpful and what is not. I've had PTs and even my own PCP say I should do exercise and watch what I eat. I remind them of my disease and they look puzzled at wondering why it makes a difference.

I drive 2.5 hrs to my clinic at Duke. There is one actually closer to me, about an hour away at UVA, but I have family in NC. They make the trip worth is and offer that additional support while I'm there. Even though I'm progressing slow and on the every 6 month plan right now, it's refreshing to spend the 3-5 hours in the clinic talking with practitioners who really understand and can offer real guidance and reassurance. I hate having ALS, but a good medical team makes the journey a little less daunting. I also think, if you're going to have a clinic a good distance away, that having a great PCP is essential. Whether they know much about ALS or don't (mine doesn't, but she's motivated to learn I'm seeing) they can maintain contact with your neurologist for guidance on management of everyday concerns or acute problems that may arise when a 2.5 hr trip isn't feasible.
 
My husband finds the ALS clinic not really helpful any more. It is good in the beginning, as you need equipment and have a lot of questions that all the specialists can answer. We use to go to a well known clinic but the 3 hour drive one way became just too much, now we occasionally go to a closer clinic. since my husband is slow progressing, now we only go about once a year unless we need something. we have a pulmonologist locally because that is important. The rest of the docs don't do alot in my opinion.
 
. If, on the other hand, you are seeing these types of professionals at an ALS clinic, they deal with PALS regularly. They won't need to go look up drug interactions when prescribing medicines that your partner needs. They'll know what DME vendors to call for cough assists and BiPAPs and suction machines.

My clinic had the pt, ot nutrionist etc see me, but after they did an eval gave me scripts. I then went home to make my own calls, so in a sense they farmed it out. Social worker gave out so much wrong info I just gave up after hearing that the financial programs they recomended wer no longer in existance. I also heard alot of watch it on u-tube. Let's face it, they get paid a nice hefty sum and I do not need go to a clinic to watch u-tube. The whole ordeal was no impressive, but I will see what happens next. So far we have done all the fot work including having to teach ourselves about hoyer lifts and sliding tubs. I hope it gets better.
 
Hi ILuvNY,

Montclair New Jersey is approx. 19 miles from Manhattan.......My husband goes to Dr. Dale Lange he's the Neurologist-In-Chief and Chairman, Department of Neurology at Hospital For Special Surgery at 525 East 71st Street New York, NY 10021. Dr. Lange's phone number is (646) 797-8917.

I would definitely recommned Dr. Lange, he is a great doctor, he spends the necessary time to answer any and all of your questions, he is a caring and compassionate Doctor. He also runs an ALS clinic on Wednesday's every month (the clinic is run by the ALS Association "Greater New York Chapter serving Greater New York and Northern adn Central New Jersey).

My husband has his second visit to the clinic at Dr. Lange's office at the end of April. There are so many benefits to being part of a Clinic, like being able to talk to a Social Worker who will be able to coordinate any and all things you guys will need now and in the future (such as a visiting nurse, equipment, etc.). I live in Rockland County New York and I would not dream of taking my husband anywhere else!

Please don't hesitate to contact me if you have any questions, I wish you both the best of luck in figuring out what will be best for you both!

Jennifer
 
Wow, jb63 it sounds like you had a horrible clinic experience, I'm sorry that happened to you.

I see your from Long Island.......what clinic did you go to? I'll be sure to steer clear of that place.
 
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