Diagnosis

New diagnosis and before diagnosis
1

I’ve been asked to attend the hospital and speak to the MS specialist on Wednesday next week.

after seeing the results letters to my GP and speaking to the ‘regular’ neurologist it’s clear a diagnosis is coming - just what type.

I want to ask if there were any questions I should be asking - maybe you came out of your diagnosis appointment and kicked yourself for not asking something? So far I have:

  • What Type

  • Could this be the reason for my cluster headaches / migraines

  • Are there any medicines you can prescribe

2

Hi, sorry you are going through this stressful stage of your diagnosis journey.

Your questions are the right ones to ask. You could add perhaps;

Do I fit the criteria for DMDs?

Can I have access to an MS Nurse?

Will I need further tests?

Can I be referred to an OT/continence service/Physio (if you feel you need this)

Good luck

Boudsx

3

You can take someone with you if you think it would help.

I would definitely take someone to drive me home especially if you are taking a prozac because it is an opiate.

4

Thank you! your responce is exactly the reason I asked :slight_smile:

5

Hello 3xpink

I would add to Boudicas points:

What type of MS do you think I have? Have a look at https://mstrust.org.uk/about-ms/what-ms/types-ms If you’ve had relapses (aka attacks or flares) followed by remission, either complete or partial, then it’s likely you have relapsing remitting MS. This means you would/should qualify for disease modifying drugs. (85% of people have RRMS.)

So, ask the neurologist which drug s/he thinks is most appropriate for you. After the appointment, come back to us and ask about the specific drug you’ve had recommended.

Definitely ask about MS nurses. A good nurse is brilliant, they’ll be your route to other services and a font of knowledge about DMDs and symptoms.

I would second Caroles advice about having someone with you. Often you leave the neurologists room forgetting everything you’ve heard in spite of having thought you’d not forget anything. Or if you are alone at the appointment, try to write down anything you don’t understand.

Best of luck, come back here after your appointment, or before if you have questions we can help with.

Sue

6

thank you.

Unfortunately I’m not in a position to take anyone with me so I will take a notepad and pen!

I’ve not had a physical exam and while there’s been no mention of it I wonder if they will also prod me whilst I’m there.

7

you might have your reflexes tested (tap on your knee with a toffee hammer)

VEP - Visually Evoked Potentials.

a timed walk down a corridor with whichever aid you use.

there may be more but mine was 2008 and my memory has become as wonky as my legs!

8

UPDATE: They cancelled my appointment (for the second time) rebooked for 7 weeks time.

So another 7 weeks of being in pain with no real answer and no hope of medication. FYI: Basildon Hospital say their neurologists keep leaving.

9

Oh poor you 3Xpink.

It sounds like you are really in need of a good MS nurse. Why not phone the hospital and ask to speak to the neurologists secretary. If the neuros keep leaving, you might just have to ask for ‘a neurologists secretary’ rather than the doctor with whom you had the (cancelled) appointment. You could ask the secretary:

a) Who will you be seeing in 7 weeks?

b) Is there any possibility of bringing it forward? (Try for some sympathy!)

c) How do you get in contact with an MS nurse?

d) Is there a community neurological team (with physiotherapists, OTs, bowel and bladder nurses, etc)? If so, could you be referred? By who (your GP, MS nurse, self referral)?

e) Any other questions that cross your mind or might help you to feel understood.

I do hope you can at least get to speak with someone ASAP so you can at least feel you are in the system.

Best of luck

Sue