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blitzc

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Joined
Apr 20, 2018
Messages
455
Reason
PALS
Diagnosis
01/2018
Country
US
State
OH
City
Massillon
I will be attending my first Clinic Visit next week. I was diagnosed in January but received a second opinion from my current doctor several weeks later. In May, I did have a follow-up visit with my doctor concerning my first three months with Radicava infusions and to check my progress.

My questions are: What type of information do I need to inquire about?

Should I ask about certain test results which have already been performed?

Are there upcoming tests or procedures that are needed?

Should I be prepared with any particular information for the doctors and other professionals?

Thank you to everyone for your expert advice!

Cathy
 
If your clinic is structured similarly to mine, they do some pulmonary function tests, put you in a room, and then the various therapists and doctor come to you.

You will meet with the respiratory therapist, PT, OT, SLP, dietician, social worker, neurologist, and nurse. They will do various functional assessments on you in order to decide what type of adaptive equipment, if any, you may need. These can be things like wheelchairs, braces or splints, BiPAP machine, dietary recommendations, timing of G tube placement, eventual need for speech generating device. They may give you some exercises to do or make referrals to other providers (e.g. pulmonologist or gastroenterologist). The neurologist may give you medications, depending on symptoms (e.g. medications for spasticity, emotional lability, depression.

The questions you asked about test results and possible upcoming tests and procedures are good questions for the neurologist.

To fully prepare, bring along any lab results or office visit notes you may have had from other providers since your last neurologist visit. Make a list of any new symptoms that may concern you. Be prepared to tell them about your diet and and exercises you may be doing. Bring something to eat and drink and something to read in case you spend some time waiting around. The whole experience can take at least 3 hours. It’s also good to bring a small notebook.

Hopefully the experience will be a good source of information.
 
Hi Cathy,

You may want to read the "first clinic" sticky for some possible insights.

Every clinic is a bit different, but you always have the right to opt out of seeing anyone who doesn't add value, as in any other health care setting. Make a list of questions and bring it with you. Keep a folder of all test results. Make sure you have the contact information for whomever is your liaison between visits.

Best,
Laurie
 
Laurie,
I guess I didn't realize there was a "sticky" for this topic! I will certainly give this a look.
Cathy
 
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