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MithrandirLogic t1_je9rvha wrote

I work in another neurology group in the city, and just want to add you’re not looking for the best Neurologist at Penn, you’re looking for the best ALS neurologist at Penn. Not trying to be pedantic but there are many sub-specialties in Neurology and “the best overall neurologist” might not even specialize in ALS, which is a type of neuromuscular disorder. I think Lauren Elman might be a good place to start though.

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MithrandirLogic t1_je9s9qk wrote

Replying to pleeplious (#2,483,404)

It’s sounds like he’s already been to other neurologists from your post, so I’ll add you should be asking for a “second opinion” appointment, might be faster to get one of those than a new patient visit. Be prepared to have all prior test results and after visit summaries on hand as often they want to review everything prior to your consult.

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Legitimate_Host9444 t1_je9zm3u wrote

I do not have ALS but I am seen at Penn’s Parkinson’s clinic. Penn has a separate ALS clinic as well, where patients are seen by a full team, including counselors, physical therapists, etc in addition to neurologists.

I strongly recommend calling Penn and asking for an appointment with the ALS clinic.

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aguafiestas t1_jea297p wrote

Penn has a dedicated Comprehensive ALS Center, and you can see the physicians listed there (Lauren Elman, Colin Quinn, Defne Amado). So does Jefferson, and it seems the ALS neurologist there is Hristelina Ilieva.

However, while a comprehensive ALS center is the best place for someone who has ALS, that might not be what a person who is still undergoing work-up needs. These centers are targeted at treating people who actually have ALS, and so they may have criteria about who they see. You might also be able to see someone else faster.

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NoMoreSmores1 t1_jea65bp wrote

Just wanted to say good luck as you navigate this potential diagnosis. Having been through it with a close family member, it's hard. We went through a central jersey hospital for treatment and we were connected with a team of specialists as well as community support group. All can be helpful as you consider immediate needs and future needs for your family.

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throwawaitnine t1_jea7eu5 wrote

Hey OP, can't help you on a recommendation. I just want to say I understand what you may be experiencing and I'm sympathetic.

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pleeplious OP t1_jeajwj0 wrote

Replying to throwawaitnine (#2,487,590)

Hey thanks a bunch. What I am learning is that ALS is nasty because the person you know so well essentially changes in front your eyes. It’s horrible for everyone. Obviously the person with the diagnosis gets it the worst. I am a secular humanist (aka an atheist) so its tough to know that good bye means a permanent goodbye. I am envious of religious folks. They have at the least a “promise” of seeing their loved one again.

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ybhakta99 t1_jeask9p wrote

I work at the ALS Hope Foundation in the research division at Temple Health Sciences Campus and I can state that our clinic has an expert team led by Dr. Terry Patterson. She has expertise in neuromuscuar disorders. Whats different is that this is a multidisciplinary clinic which means that physicians, PTs, OTs, Mental Health RN, Nurtironist are all available to the patient on the same visit and through the diagnosis process.

Heres our website: https://www.alshf.org/

Please let me know if you have any questions. Wishing you and your family get through this time smoothly!

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throwawaitnine t1_jeatcnn wrote

Replying to pleeplious (#2,490,864)

I try not to proselytize, I think it's rude. I went through a similar thing with my own dad, FTD. I found solace in my religion during that time not because I thought of seeing my dad as he was in the next life, but because it was such a struggle to understand how something so horrible can happen to a person, to a family. For me religion was a way to tell myself that things happen in life that we don't understand but there is still a meaning to it.

I hope you can find that inner peace for yourself in your own way. Anytime you feel like you are going through this and you just want to vent, you can send me a private message, anytime. No talk about religion, just someone to talk to who knows what it's like.

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sciencefaire t1_jeaytov wrote

I do not have a recommendation but I wanted to wish you and your dad luck as you navigate this diagnosis.

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PM_me_a_croissant t1_jeb0m30 wrote

I’m so sorry to see someone else getting this diagnosis. But my mom was treated by a Dr. McCloskey at Penn in university city. My dad couldn’t stop talking about his amazing attitude/guidance during such a hard time.

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phillybeardo t1_jeb6sqd wrote

I wasn't admitted for ALS, but I had a cancer related brain tumor that had to be removed back in January, and the lead doctor on my team was Christina Jackson. I can attest that they did a wonderful job (besides how they shaved my curls for incision lol), considering what I was faced with. A very clean removal, with no residual after effects! Kinda amazing, tbh.

Dunno if that helps in any way, but best of luck to you!

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Prestonelliot t1_jebfs6d wrote

My dad had ALS, we lost him about 17 years ago. When he was getting treatment, there was a good doctor at Hahnemann but I do know that person isn’t there anymore or possibly died? But I remember that hospital having a great department that was researching ALS. That hospital folded into Drexel I think? Might want to check them out if Penn doesn’t work out. Good luck, ALS sucks ass so I hope your parent doesn’t have it

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Funfruits77 t1_jebkcsx wrote

Replying to pleeplious (#2,495,157)

I cannot recommend Dr Terry Patterson enough. She is unmatched as a doctor in this field. Her knowledge, care and understanding are as deep and vast as the oceans. She has treated someone important to me for 20 years and allowed her to maintain a great quality of life. This is the answer you are looking for. She is one of the leading researchers in this field, she is one of the beneficiaries of the Phillies ALS benefit. There should be a shrine built in her honor someday.

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bms212 t1_jebkr2m wrote

Replying to pleeplious (#2,495,157)

I will second the ALS Hope foundation, but also recommend the group at Jefferson. The treatment Jeff is using is groundbreaking and has had some excellent results in delaying progress. Good luck during this difficult time.

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Funfruits77 t1_jeblajv wrote

Replying to ybhakta99 (#2,492,918)

Dr Patterson is absolutely the right answer. I am thankful for her every day and have been for close to 20 years. Absolutely the best I have only the most wonderful things to say about her she is a treasure.

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Funfruits77 t1_jeblbfx wrote

Replying to ybhakta99 (#2,492,918)

Dr Patterson is absolutely the right answer. I am thankful for her every day and have been for close to 20 years. Absolutely the best I have only the most wonderful things to say about her she is a treasure.

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PM_me_a_croissant t1_jebxmna wrote

Replying to pleeplious (#2,502,545)

He was, yes. But this was over 10 years ago when she was diagnosed. He could have retired by now, in which case I’m sorry!! But I figured I’d reply since he was awesome. I hope you find answers and take care of yourself as well as your dad.

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beemac126 t1_jecf6l6 wrote

Replying to pleeplious (#2,502,561)

Christina Jackson is a very skilled neurosurgeon but won’t be able to help with als

Agree with others to specifically schedule at the als clinic as she’ll need comprehensive care

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New_Land4575 t1_jecsw42 wrote

https://www.massgeneral.org/doctors/16904/merit-cudkowicz

Merit is by far the best ALS doctor I have ever met. She runs multiple trials through MGH. I know it may be a burden but try to get an apt with her or at least watch her talks/interviews as she can provide amazing landscape of ongoing trials.

Stay strong. ALS is a daily grind. My pops is starting year 5 since his diagnosis and while things are definitely getting harder he is still with it.

Another thing to know is that if/when non invasive ventilation is needed talk with Jason:

https://www.pennmedicine.org/providers/profile/jason-ackrivo?fadf=pennmedicine

He’s a lung doctor but specializes in als and can help prevent the need for a trach

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sweetporcelain t1_jedihkk wrote

My partner sees Dr. Ilieva at the Jefferson ALS clinic and we love her! Both Penn and Jeff have amazing clinics, so I'm sure he'll get great care at either place

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sickPeep t1_jedn2f8 wrote

Doesn't it take forever to get an appointment?

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