Newbie advice please

Hello,i have been referred by my doctor to the neurologist woth suspected MS.

Ive add some weird feeling symptoms such as burning in hands and lower body which feels like sunburn,especially at night,also very heavy legs and muscle spasms,i have feelings like i have a belt on round my stomach area sometimes,my mobility is hetting seriously affected.
I was diagnosed with fibromyalgia a few years back but knowing my body i know its not symptoms of that.
just after some advice/anyone have these symptoms from MS so i can ne prepared.

Hi davidb75

The sunburn sensation is well known to a lot of us here, its particularly annoying at night when you are trying to get to sleep, but there are some medications that can tackle it (or keep it down to a tolerable level). Your GP should be able to help you with those (for me Gabapentin & Amitryptyline do the job). We understand the feeling of heavy legs and muscle spasms too. There are medications/therapies that can help here as well. The belt around your middle might be the MS Hug (the muscles around your middle going into spasm - as if the rest of them weren’t enough).

In the meantime, while you are waiting to see the Neuro - keep a diary of your symptoms, the what, when, how long, out of 10 scale. Its handy to take this with you to your appointment and its also handy to look back over from time to time - to work out patterns like leg(s) going into spasm at night if you’ve been on your feet or sitting down more than usual during the day; if the sunburn is worse if you get a cold, or got stressed out by something; if your symptoms get worse if you get too hot or too cold.

When you see the Neuro - make a list of the 5 symptoms that give you the most trouble. Tell them if there are others, but that these 5 are the worse.

Be prepared for the “are these really medical tests or are you just messing with me” tests (fingertips to nose, walking across the room and back, following the light/fingertip with your eyes only etc.) Hopefully the Neuro will be thorough; depending on what they see/decide, MRI(s) and possible referrals to other departments, possibly Rheumatology etc. They like to rule everything out before an MS dx.

A few suggestions:

  • Make a list of questions for your neurologist. Appointments can feel very rushed and it’s easy to forget things.
  • At the end of the appointment, ask what happens next and how long this will take. Ask who to contact, and how, if it doesn’t happen. This means you leave with a plan. It’s also not a bad thing to remind the neurologist of what they need to do.
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