Last reply 7 months ago
Worrying about first appointment

Hi everyone, 22 July this year I finally got diagnosed with PPMS been struggling since 2015 but happy I’ve finally been diagnosed and not thinking I’m making these symptoms up in my head. I’m waiting to be referred to the ms consultant and ms nurse, how long does this take?? What happens in your first appointment?? I’m not the best with blood tests! And worry about this. What was your first appointment like??? Need to know to put my mind at ease!

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7 months ago

Hello, I was diagnosed last year with rrms. It took around 2-3 months after my referral for an appointment with my neurologist. In my first appointment we went over my brain scan, talked about symptoms, then she done things like poking my arms with a pin and rubbing some kind of brush along my feet to know if I could feel it, other things like pushing down on my arms and hands, nothing serious. After I met with the neurologist I met my ms nurse who spoke to me about ms then we done a few blood tests. Good luck and all the best to you 🤞

7 months ago

@bennym , if you haven’t seen the MS Consultant, who diagnosed you? It’s normally the role of the Consultant to make that decision……

Anyway, I would say 2-3 weeks to wait for the MS Nurse. If you haven’t heard, locate their phone number and make a polite enquiry.

An appointment with a Consultant will take a lot longer. But, it you haven’t received an appointment in 2-3 weeks time, then a polite chaser to their secretary would be in order.

There should be no need for further tests with the Consultant, as you are already diagnosed. They will probably determine whether you fit the criteria to be treated with Ocrevus, the only treatment available for PPMS.

The chat with the MS Nurse will be less formal and is more of a getting to know you introduction.

7 months ago

Not sure what tests you’ve had to receive your diagnosis. That typically is a MRI to note lesions and some people (I understand) through a spinal tap. All my checks are through brain and spinal MRIs. Annual regular checks and every time I have a new symptom to see if it is active and needs prednisone. The prednisone I am given is through an infusion ball so they just place the IV and then I hook up to it each day to feed in the steriod. Of course placing the IV is like a needle but the nurse does it.

The three-time a week shots are with a needle but with an epi-pen type of injector so just pressing the button to inject.

While on Rebif they need to check your liver ever 6 months so that is a little blood draw.

Didn’t really think about it but there is some needle work. They don’t bother me. I’ve donated blood for years and they don’t use any big needles like that-

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