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bostongrl

New member
Joined
Aug 8, 2018
Messages
3
Reason
PALS
Diagnosis
07/2018
Country
US
State
MA
City
Raynham
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...
 
Hi, Boston, welcome. Give yourself time to process, and no doubt cogent questions will formulate themselves.

Best,
Laurie
 
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?
 
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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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
 
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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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
 
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. :)
 
Sorry to have to welcome you here, but welcome nonetheless.

Steve
 
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