Coronavirus and Min-102

[Tim76]

I’m supposed to have my 18 month appointment next week in Boston and do not want to travel. I’m trying to see if they can mail the next 6 months supply of medication. Has anyone been able to avoid traveling and still stay on the trial?

[COwithAMN Administrator AMN EASIER Volunteer]

You are entirely right to avoid travelling. The virus is a global phenomenon so I imagine those running the trial will be devising a strategy to deal with this since many patients will take the same view as you.

Has anyone here direct contact with the lead scientists to get an offical view? Coronavirus will get worse before it gets better.

[wilburlois15]

I have my 2-year (!) appointment in early April in London. I don't have to travel far, so I am quite happy to take a taxi, but I am more concerned that the hospital will be closed, or at least closed to people like me who could infect others.

I sent an email to the nurse last week and she responded that they were planning to carry on as usual. However, since then the UK coronavirus guidance has tightened considerably so I am uncertain whether the appointment can take place. They haven't cancelled yet.

If I were you, I'd get in touch and see what they say. Given that AMN people can be immuno-compromised due to the impact on the adrenal gland, they should be sympathetic to your concerns.

[jayxie in reply to wilburlois15]

Two years of trial. How is your health? Is it better?

[wilburlois15 in reply to jayxie]

Some ups and some downs. I'd say on balance that not much has changed, but that is probably a good thing as there is no progression. We'll see... My two years are finished soon but given the coronavirus problems I doubt I'll be able to meet up with them for my final appointment for some time.

[SusanBr]

I’m due my normal Neurologist appointment Thursday and it has been changed to a telephone appointment so hope that goes ahead. Seem to be doing doctors appt over phone as well. Whilst I am gradually worsening as expected with AMN I cannot show him, so that’s a disappointment!!!!!hope you get sorted out soon Sue x

[Tim76]

They just got back with me and are rescheduling all appointments to a later date and can ship the medication - fantastic news!

[KennyInPA]

I was to have an appointment on Friday for the 18 month, also in Boston. They cancelled for now and can ship meds if need be as Tim said above. Stay safe everyone!