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Dinky

Questions to ask Specialist

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Confused
Dinky

Hello All

 

So from February I experienced numbness, balance issues and blurred vision in one eye. As my symptoms progressively got worse I was seen by a Neurologist and sent for Cervical Spine and Brain MRI’s.

 

Both showed clear of lesions and a Lumber Puncture was arranged, after 6 weeks and chasing results I was told over the phone that my CSF oligoclonal bands are positive for nueroinflammation and was told I have MS and would be referred to a specialist.

 

I have my appointment booked for Aug 3rd and don’t really know what to expect from it. Any advice would be appreciated and also what questions to ask.

 

Although many of my symptoms have eased I still have a numb left arm me, I feel a little off balance occasionally still and do get vibrations eminating from my spine when I have done too much. I work in a warehouse/DIY store. I fine fatigue is my biggest battle which is very hard as I have 3 teen sons….

 

Dinks

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Sluggish
Marina

Hi Dinks and welcome!

 

This must be feeling like a very uncertain time for you, if not a bit scary...

 

I’m guessing that the neurologist who ordered the MRIs/ LP and who gave you a DX of MS over the phone was not an MS specialist, which is why you’re now being referred to a specialist - eg, a neuro who’s an MS specialist?

 

The best thing we’ve found is to make a written list to take with you, with every single symptom you’ve had and when and how often you’ve had them. That way, you can tell the neuro what your symptoms are or have been. And make a separate list of any questions you have.

 

You’ll want to ask what type of MS you have, and what treatments might be available to you.

 

The neuro should hopefully put you in touch with an MS nurse, who will thereafter be your first port of call for any future questions or for meds, and who might refer you to physio if needed, etc.

 

You might also like to take a family member or trusted friend with you, as we sometimes feel a bit nervous on a first visit to a neuro, so that they can help with asking questions and remembering what the neuro said to you.

 

This page on the MS Trust’s website has some handy tips about “Preparing for your appointments” about half-way down the page, also with some “Example questions to ask”, which you might find of help?

 

MSTRUST.ORG.UK

Here are some suggestions on how you can make the most of your appointments with health professionals in your MS team.

 

The vibrations emanating from your spine sound like it might be “L’Hermitte’s Sign”?

 

MSTRUST.ORG.UK

Lhermitte's sign

 

Good luck with your appointment, please do let us know how you get on? And feel free to ask any questions you may have!

 

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Marina

(belated DX in June '05, SPMS)

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Confused
Dinky

@Marina

  Thank you for your advice and the information you shared regarding Lhermitte's sign,  and what questions to ask.   Certainly sounds like what I experience and it’s nice to give it a name rather than trying to explain mobile phone type vibrations to people.. lol

 

I have a lot of prep to do before my appointment it sounds like, 6 months worth of symptoms and notes to consolidate into a smaller amount of notes so that I don’t miss telling the specialist.

 

Dinks

 

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Sluggish
Marina

Ooh, those “mobile phone type vibrations” are awful and can have a ton of different descriptions given to them! Buzzing, fizzing, bubbling, electric wires shorting, and many more.

 

I get them, but not due to L’Hermittes. Mine are neuropathic pain, and I have them permanently in my feet and legs to some degree or another, and sometimes in my abdomen when it might also feel as if I’m having palpitations but I’m not.

 

MSTRUST.ORG.UK

Pain

 

I’m sure you’ll manage just fine with your notes :flowerface:

  • Like 1

Marina

(belated DX in June '05, SPMS)

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