Old 08-08-2018, 07:55 PM #1 (permalink)
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Default Newly diagnosed

Hello everyone,

After having received a diagnosis of PLS 7 months ago, my doctor changed the diagnosis to ALS 2 weeks ago based on lower motor neuron symptoms. I've been on riluzole for 3 months, and just signed the paperwork to start radicava. My mind is definitely spinning at the moment, so I wanted to reach out and connect a bit. I'm not really sure what to ask. I have a million thoughts and questions that all seem coherent and cogent until I start to type them...
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Old 08-08-2018, 08:06 PM #2 (permalink)
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Default Re: Newly diagnosed

Hi, Boston, welcome. Give yourself time to process, and no doubt cogent questions will formulate themselves.

Best,
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Old 08-08-2018, 08:07 PM #3 (permalink)
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Default Re: Newly diagnosed

I am sorry you have to join us but welcome.

Ask when you are ready but in the meantime browse here and start nibbling at the stickies AKA important posts in the general section. There is a lot of information here and people are happy to help

We are practically neighbors! I go to MGH and see Dr Cudkowicz. We are lucky to have great clinics and doctors here. I hope you also got a second opinion?
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Old 08-08-2018, 08:10 PM #4 (permalink)
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Default Re: Newly diagnosed

Ask any question. Someone is always here to help.

One of our moderators (Greg) who also has ALS put together a wonderful handout. I'm attaching it. It has a lot of information.
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File Type: pdf ALSInfo12.pdf (346.7 KB, 132 views)
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Old 08-08-2018, 08:19 PM #5 (permalink)
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Default Re: Newly diagnosed

Thank you all for the quick responses. Nikki, I go to MGH as well. I see Dr. Berry there. He was my second opinion. I'd gone to Brigham and Women's first. I'm super grateful to be living in a place with such wonderful facilities and doctors. It's all just a bit overwhelming. After the diagnostic process, everything seems to be happening very fast. I'd never even heard of radicava, so I'm trying to learn more about it and about people's experiences with it. I'm in a holding pattern at the moment while I await insurance approval, so I have some time to learn as much as I can.

Best,
Michelle
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Old 08-08-2018, 08:35 PM #6 (permalink)
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Default Re: Newly diagnosed

Oh I love Dr Berry too. He is so kind and brilliant . You will love everyone at MGH I think.

We have several radicava threads. Because it was new last year there were lots of insurance questions that go on one thread and there are two about experiences with it. Also a Canadian thread. One is in the PALS section the rest are in general. Do a search

Let ne know if you have any mgh specific issues

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Old 08-08-2018, 09:01 PM #7 (permalink)
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Default Re: Newly diagnosed

Nikki, Dr. Berry is fantastic. He's incredibly kind. I do like MGH a lot. Everyone has been wonderful there. Thank you for the info on the radicava threads; I'm going to spend some time reading through them.

Best,
Michelle
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Old 08-09-2018, 12:28 PM #8 (permalink)
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Default Re: Newly diagnosed

Welcome! I went to MGH for my 2nd opinion but go to the UMass ALS Clinic. We have a good number of MA people here.
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Old 08-09-2018, 09:26 PM #9 (permalink)
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Default Re: Newly diagnosed

Sorry to have to welcome you here, but welcome nonetheless.

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