Consultation with Duke ALS Clinic

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wtici

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May 29, 2021
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Loved one DX
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03/2021
Country
CN
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NC
Hello,

My mom was diagnosed with ALS in China last year in April. I joined the forum and posted a few questions at the time. I am grateful to those who responded and offered advices.

Despite of the sudden mental and physical break down during the initial coupe of months after her diagnosis, luckily she has been stable with relatively slow progression with help of additional medication for her anxiety. Now that travel restrictions has loosened and her condition still allows, she will be coming to US to spend a few months with me. It would be just too difficult for me to go back due to the strict quarantine requirements in China.

I plan to take her to an ALS clinic here for a consultation. Riluzole is her only medication for ALS. She is also taking Tudca that I sent over. I am not sure what I can expect from an consultation other than to review her medical record and EMG result, basically just to confirm her diagnosis and evaluate her progression since there is no cure and not much else we can do?

She’ll bring all her medication for a 3 months stay here. I will buy short term travel medical insurance for her just in case of other medical need. By visiting clinic here, I am hoping that at least the doctor can prescribed her Riluzole if she decides to stay longer. Or, if I want to buy sodium phenylbutyrate from Europe, I’d need US doctor’s prescription.

I live in Charlotte, NC. I am thinking to take her to Duke ALS clinic which is probably the most convenient location. Dr Richard Bedlack there seems to have established reputation.

I’d appreciate it very much if someone had similar experience to share, or can offer some advice on clinic recommendation as well as what to ask and expect at the consultation.

Sincerely,

Ting
 
Is there a reason you posted in the private area? I can move it if you want. More people will see it in the public space

for general guidance on second opinions Resource - Second opinions and first clinic visits

dr Bedlack / Duke would be fine for a second opinion. I did hear a while ago there was a huge wait to be seen. Should that be the case can you travel?
 
Not really, wasn’t sure which one pick.
 
Ok will move to general discussion in the public area for better visibility
 
Thanks Nikki!
 
We go to Emory in Atlanta but Dr. Rivner does an ALS Clinic in Augusta and Macon GA. I have Dr.Rivner's nurse's cell phone number if you want to try and call her. The GA ALS Association website probably has the number for the clinic itself on their website. Those are the 3 clinics in GA...Emory and the 2 run by Dr. Rivner. I forget how far Charlotte is from Augusta.
 
I looked it up. Dr. Michael Rivner at the ALS Clinic of Augusta. The appointment line is 706 721 4581. I think it is about 2.5 hours from Charlotte to Augusta.
 
Mary,

Thanks for the recommendation on the clinic. Augusta is about the same driving time as to Duke. I will check out their website in more detail.

Did you go as your primary treating physician or for consultation? How is your overall experience with Dr Rivers?
 
Wtici, We started with Emory with a diagnosis of peripheral neuropathy and once they changed the diagnosis to ALS we stayed with Emory. We used Dr. Rivners' speech therapist to obtain the eye gaze since she was closer to us. So I have not met Dr. Rivner myself.
My impression from attending virtual ALS Association meetings is that people are happy/satisfied with the care they receive from him and his clinic.

Now Emory is doing Telehealth, but I am not sure if you can do this out of state. You would need to call and ask them. Also they might want to meet your Mom before they would agree to Telehealth. But you never know....
 
There is an ALS Clinic right in Charlotte -- the Carolinas ALS Center. The next closest one is in Winston-Salem, at Wake Forest Baptist Medical Center.

I have been to both, they are both solid. I'm here in Charlotte, happy to provide other support if needed. Have you reached out to the Joe Martin ALS Foundation in Charlotte? They offer good support.
 
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Mary, thanks for the additional information. Telegraph is convenient, but I will take to her in person since she would already come a long way. My mom had limb onset with her right hand and arm. During the first 1 or 2 month after her diagnosis when she was in a break down condition, she started experiencing numb toes and soles, she had fallen a few time, her Dr told her that the numbness is not related to ALS, more likely it is peripheral neuropathy. Now that you mentioned your initial diagnosis is peripheral neuropathy, I am just wondering that symptoms you had. Her numbness receded to the toes later. But from today’s call, she told me it started spreading to her soles again, and her lower leg started feeling weak.

Ken, thanks for chiming in! I learned about Charlotte ALS clinic and clinic in Winston-Salem last year when I was doing research, don’t remember specifics about both clinics. At the time, I wanted to do overseas consultation, maybe just felt that Duke has better established program for this matter. In Charlotte, there are UNC ALS clinic and Atrium Heath ALS center, which one did you go?

I didn’t know about Joe Martin ALS Foundation, so thank you for mentioning it, I will check it out.
 
I would disagree that Duke on the face of it has more to offer her than the clinics in Charlotte. Reputation isn't always reality.

If you want her diagnosis re-evaluated, I would make sure she brings or sends digital copies of everything in terms of records that would be difficult to access once she is in the States. And, of course, you may need to make or obtain translations.
 
Richard is to notch. He is very well regarded nationally and internationally. He also does testing, real testing, on alternative treatments and scores them. The site is ALSUntangled. I was on it earlier today.

There are only a handful of ALS doctors at his level. If I didn't have such an incredible fix or here I would be jealous. There is a very strong ALSA group there.
 
I am aware of ALS Untangled. My comment relates to patient care experiences of others and publications I have read. I am glad your experiences have been good. Duke is hours from Charlotte, so my point is absent any compelling reason not to, it is worth considering a clinic closer to the OP's home.
 
I love that you can ask a question here and receive a range of answers as we all have our own experience, situation and POV. You can then weigh up all those answers and choose to act, or not, on what resonates best with your situation.
I'm so sorry your mum has this diagnosis. She is very lucky to have you put in your all to see how much you can assist this way.
Please do keep us updated.
 
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