Forum

Awaiting appt.: Worried not getting meds

Hey All!

I have just read a lot of your lovely posts and realised only now that I would have saved myself a lot of distress over the last three months if I had looked into the forum sooner! Do’h!

Anyways… I have been diagnosed by a private neurologist with MS last October, and have since then been on the waiting list for an NHS neurologist. The appointment is now Monday (hallelujah!), but my anxiety, depression, and symptoms have gradually gotten worse over the period of waiting, as I’m sure you’re not surprised to hear.

The reason I’d like your valuable insight is that I am worried that the doctor may not start treatment.

I have had two isolated clinical signs (numb legs in 2012 and 2014, and optical nerve inflammation in 2017) and have two lesions in my brain, one in my neck and one in my lumbar spine. I am worried sick that the doctor is going to look at this and say that either, it’s maybe not classed as MS based on the McDonald criteria, or that treatment is not required as I didn’t have two attacks in the last two years. I don’t think I’ve had any new lesions for the last 3 years or so. Lumbar puncture done in 2015 was negative.

What is your experience? I know our cases are all different, but I want to prepare as well as I can, and mention all that’s important for the doctor to make a well informed decision, and not realise after the appointment that I should have mentioned a specific symptom. Or realise that I didn’t make use of a right I didn’t know I had etc. Does that make sense?

So do you know of any rule that would help to predict if I can start treatment? Any additional information that may be helpful for the doctor to decide for treatment?

On another note - do you know if the symptoms (fatigue, tingling, tremors) are affected at all by the treatments, or are there other drugs that could help with that?

Sorry, lots of questions… thanks a lot for your help!! :slight_smile:

St Bart’s blog has helpful pointers.

they say that early intervention is key.

this could mean lifetstyle changes or early DMDs.

it won’t hurt to mention that you are aware of the research at St Barts.

to be honest, i’d say mention every symptom that you’ve had.

the neuro will discard the irrelevant and use the rest towards diagnosis.

the DMDs just delay the next relapse but you need other meds for symptom management.

the neuro or ms nurse can write to your GP saying what you need which is very helpful for getting them prescribed.

take someone with you to prompt you if you dry up.

they can also make notes of what the neuro says because if you’re anything like me, you will start to forget as soon as he or she stops speaking!

Hey Catwoman!

(Awesome name by the way)

Thanks so much for your prompt reply! That sounds promising. Yes, I’m taking my husband with me, and I’m so pleased now that I am.

Thanks for the tip with the link to the GP, I had no idea!

Thanks again, I’ll bear your pointers in mind, and will read through St Bart’s blog. It’s this one, right? http://multiple-sclerosis-research.blogspot.com/p/newcomers.html

Cheers!

Hello

Yes, the Barts Blog is the address you’ve given

According to the McDonald Criteria (https://www.mstrust.org.uk/a-z/mcdonald-criteria) you should still be diagnosed with MS. But the NICE prescribing criteria might restrict the DMDs you qualify for.

The NICE criteria for DMDs is that you have ‘active relapsing remitting MS’. This means you’ve had 2 relapses in the past two years. See https://www.mstrust.org.uk/understanding-ms/ms-symptoms-and-treatments/disease-modifying-drugs

As you’ve not had 2 relapses in the last 2 years, you might only qualify for the drugs such as are given to people diagnosed with CIS: https://www.mstrust.org.uk/a-z/clinically-isolated-syndrome-cis

Hopefully though, you’ll get an understanding neurologist who will put you forward for what they consider will be the most suitable treatment for you.

Talk to the neurologist about any ongoing symptoms you have, the DMDs won’t help with existing symptoms, they are designed simply to reduce relapses and their severity. But there are other drugs that could help. Equally, you could be referred for physiotherapy, OT or to any other service suitable for your needs. It’s not all about disease modifying drugs. Good luck for Monday.

Sue