Last reply 4 months ago
Time to start treatment

Hey 🙂

Wondering… how long did it take for you to start a treatment?

It has been about a month waiting to start my new treatment & even get MRIs done. With my old neurologist this was never a problem, things were done immediately for me. I guess I was a bit spoiled with her. Is it normal for this to be a lengthy process?

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4 months ago

Hi- I just checked your profile to see where you are as the experiences of people in different countries can be radically different. I see you are in the US. My experience in the midwest (near the Twin Cities) is that it can take a month or two to get on a Neuro’s schedule and then the paperwork to get a treatment approved and ran through your insurance company can also take a month.

To get into a specialty/high demand site (like Mayo) can take a couple of months and seeing a specialist like a Neuro Psych can take 5 months to a year.

As far as getting an MRI scheduled it will need to be ordered by your Neuro. So once you are working with a neuro and call in an unusual symptom that they wanted to see if there is a flare an MRI for me was usually scheduled within 48 hours (as long as it wasn’t over a weekend or a holiday. My regular annual MRI was typically scheduled the year in advance.

If you are seeing a neuro with a MS specialty (and I highly encourage that) they should understand the urgency and be scheduling/ordering the annual MRI and intermediate MRIs if you are having flares. If they do not react with urgency or don’t see the need for annual MRIs I’d shop around for another neuro. jmho

4 months ago

I was diagnosed 2004 age 17 neuro and parents believed better not to tell me about it I know agree with their opinion but in 2008 i searched online and found out then started interferon experienced many relapses 2010 stopped all treatments altho couple of drs said better start tysabri i did not
ive had been off treatments from 2010 to 2018 started i take gilenya

before starting interferron i was relapse free from 2004 to 2008

4 months ago

@itsmewithms Yes, I figured since this process has taken longer than expected. Planning it ahead would be good but with the change of insurance, it makes it difficult. Thank you for your response!

@nutshell88 Oh wow, that must have been a shock especially at a young age. That is good that you were relapse free for that amount of time. What treatment are you now on? Did you see a difference between those 8 years without it?

4 months ago

i developed atrophy when I was abroad in uk 2014
i had been in the uk from 2013 to 2015 learning english language also volunteered in citizens advice

im the same person I was in 2010
better awareness now but worse concentration and memory a lil worse still cant be called bad tho and balance on stairs has always been my only problem need to hold s fence

4 months ago

and yes at first it was a shock first mri was normal
second one i cried I was scared you know i was girl just opened my eyes to life now i just begun teenage ðŸĪŠ
i’m Saudi Arabian originally

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