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Awaiting first neuro appointment

So I’ve suspected MS for a while now but ignored it as focused on the actual problem. It started 3 years ago now. I started waking in the night with shoulder blade pain and had some pyrexia. Had an x-ray and nothing showed so got referred to a blood doctor. He was surprised at the referral, did loads of tests that concluded nothing and eventually discharged me. I stopped having pyrexia after about a year but my shoulder progressed to my arm which goes numb and tingly from my shoulder to my fingers. Both arms now feel really weak and exhausted for want of a better expression. I got referred to a orthopaedic consultant for my shoulder and arm and after extensive investigation, he can find nothing to explain the shooting pains, numbness, tingling etc so he recommended a neuro referral. Nothing happens quickly so that is in November. I’m exhausted. I literally have to try not to fall asleep in the day. I have started having sports massage on my back and arms and she was and still is shocked how tight my muscles are. The muscles in my right leg and left calf have started tightening up and I realised the other day that for years I’ve had days when my legs were so tired it felt like I was walking through treacle. I’m so tired. I started a part time job 3 months ago and had to work from home Thursday and sent home in tears Friday as I felt so rubbish. 3 days a week feels like too much but I don’t feel I can ask to reduce to 2 days. Luckily they are very supportive with medical appointments etc. I think have cognitive issues so I get overwhelmed with too much new information, I regularly use the wrong words without realising or get muddled with what I want to say. I forget street names, people’s names, where we have been. I know alot of that will be because I feel exhausted. Even folding washing makes my arms feel weak and tired. If it’s not MS I don’t know what it could be. Just an offload really but I’d also appreciate any tips for my first neuro appointment.

Hello

The best tip for your initial neuro appointment is to have written yourself a timeline of your symptoms.

What tends to be the pattern of new appointments is that the doctor will go through your medical history with emphasis on what’s brought you to them. So if you were to think back as far as possible, write down the symptoms you are now tying together (or might be relevant) with approximate dates. Note when things improved either partially or completely and anything that has stuck with you.

This will help enormously to concentrate your own mind on what’s happened, but will also help the neurologist to isolate what you’ve experienced.

Thereafter, I’d expect a physical examination (reflexes, sensory responses, eye movements, hand/eye coordination, balance, and many more seemingly random tests).

The neurologist won’t be trying to rule a specific diagnosis in or out (ie MS), but will look at you from a neutral stance. So they’ll first see if there appears to be a neurological problem, and if so, what that might be. Subsequently s/he will determine what further tests are necessary to work out what has caused your symptoms.

Best of luck.

Sue