preparing for first clinic

[Thomas933]

Ok, so I am staying on this thread because I want to respect the rules of the board and fully recognize that there are people on this board who are dealing with way more significant issues (my heart goes out to you). But, if the admins want me to start a new thread when the subject changes, just let me know.

My current questions relate to our first visit to MGH on Tuesday. I have spoken to them ahead of time and let then know what my husband needs out of the visit and I also made the request to speak with a person for help beginning the narrative with our children.
There seems to be at least a few people here who are familiar with this particular clinic, I have some questions.

I'll preface by saying I know we need to allow a lot of extra time for Boston traffic (like hours not minutes) and that we need to bring food and snacks as the day could be a long and tiring one. People are also telling us to write down "all of our questions" but I have to say, we have pretty simple goals for Tues. - we want to know about treatment, and how to make my husband's life as easy as possible right now. We want to know about clinical trials but in small doses. I want to leave there feeling that there is a team of people who are going to help us navigate the first 2-3 months of this while honoring exactly what my husband needs at this time.

So, I'm asking as a newbie: what do you wish you prepared, knew, asked, etc on you first visit to MGH? Is there a specific place we should park, enter, etc. Is there a reading room or library we can go to get resources?

Thank you.

 

[Nikki J]

Hi I moved this because it is a new topic and the one thread rule applies to those we call DIHALS for do I have ALS not to you!

It is an important question. There is a sticky on getting a second opinion at the top of this subforum.

I am one of those who goes to MGH.

My first visit was years ago now but what happened was after having vitals checked I was called to a room by one of the research coordinators who I think checked breathing and did the functional rating scale Next I saw a fellow who reviewed my health history and had my records relating to ALS. She then did an exam and left returning with my neurologist who asked more questions and did her exam. Then she spoke about treatment which was riluzole and the possibility of an off label medication. I also saw PT for an assessment. Sometimes instead of the fellow I think there are nps doing the first exam. And I THINK maybe not all the attendings have someone else do the exam. You might have the RN do some of the data collection then right to MD

There are various questionnaires they have and they seem to rotate. You MIGHT get the one that asks which people besides the doctor you want to see and for what questions. It also says what is the most important question you want answered. I have never left though with unaddressed concerns.

MGH is very research oriented and the doctor will likely speak generally of things on the horizon and if they currently have trials or an observational study you all agree on they will probably do an intake visit. Look at clinicaltrials.gov and do a search for what is currently open Still ask but reading ahead will help.

I was told allow three hours for the first appointment. There is also a chance the doctor will be running late. Do bring drinks and a snack but if you are very early check out EAT ST cafeteria. Ask at information on the ground floor ofWang. It is very easy to find

I hope this helps a bit.

 

[sassy]

There is also valet parking in front of the Wang building and an electronic board in the waiting room which will tell you if your Doctor is on schedule. The nurse who handles the clinical trials is a real peach.......so kind and informative. I think you will feel much better after your first visit. It was on our second visit where we asked many more questions since I think we were still in a haze at our first visit.
Sassy

 

[dldugan]

Think you should take notes. This will help with the questions you will have later.

 

[Turtals]

I agree with the suggestions of the other posters who know the clinic.

That visit was such a blur that I cannot remember specifics. There is definitely a lot of information covered. Everyone on the team is really approachable and compassionate. Don't be afraid to ask questions/clarification/or to repeat anything.

Be sure to get everyone's names, understand their roles, and ask best way to get in touch with follow-up questions (they should all give you their cards).

We have often reached out by email to various members of the team and gotten very prompt and informative responses. When they did not have an immediate answer, they chase it down and get back.

Look for parking for the Wang Building (or valet as suggested above).