Hi
I’ve been experiencing symptoms for 12 to 18 months of:
Visual disurbance, blurriness and aura amd black spots
Facial numbness tingling and weakness (feels like its been anaesthetised and is then regaining sensation)
Dizziness
Clumsiness
Loss of words/cognative ability
Memory loss/feeling foggy
Muscle weakness of rhs of body
Tingling/pins and needles/drunk elbows and knees like they’re going to collapse but they don’t.
Headaches.
Bladder and bowl weakness
Loss of libido etc
Weird skin sensations
Extreme fatigue (think falling asleep at my desk/in meetings)
Does anyone know what happens next? I know you cant diagnoise but perhaps a liklihood? The GP said MS is what she suspected but needed a neurologist to confirm or not. But i feel i need to prepare. I’m a mum to two 9 and 10 woth significant additional needs. Step mum to a 18 yr okd with severe trauma ans additional needs. Work full time. 18 months ago was running half marathons and now am struggling to make it to 7.30pm just working and living without a nap and then going to bed. And I’m just not right. Any advice?
Stay strong, treatments can help if it is ms. Glad your gp has listened to you. MRI, lumbar puncture are your next steps. Don’t expect anything to happen fast but make sure you chase up neurology regularly. Build a support team around you. Best of luck and I hope you get some answers soon
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Has your GP checked your B12 and Vit D levels? Even if they are OK, it could be worth taking a VitD3 supplement, some find it helps with cog-fog in particular, I know it helps with mine. It might be worth getting your B6 levels checked as well - there is an article somewhere on the forum re. excess B6 causing neurologic symptoms.
Your GP should be able to prescribe medication to help with the pins/needles and weird sensations whilst everything else is being worked through.
If it is MS, there is some comfort in the many disease modifying drugs available now to help slow down progression. When my brother was diagnosed in the 1980s, there was 1, maybe 2 drugs; I was diagnosed in 2022, and the number and effectiveness of drugs available to help with MS had increased massively.
The Neurologist will probably perform some standard physical tests to see how your balance is, any issues with your eyes tracking together (following the tip of their finger with your eyes only, side to side and up and down), sensation using a tunic fork, or pin prick test (just pressing lightly, not sticking one in you). They will decide what MRIs they will want in order to get a baseline for you, they may suggest a lumbar puncture (the anticipation is usually worse than the procedure itself), they may want you to have evoked potential tests to see how your brain responds to various stimuli, worst bit about those is getting the glue from the sticky pads out of your hair.
Be ready for referrals to other specialisms alongside neurology to rule out any physical causes ie. ear, nose and throat to test for vestibular (inner/middle ear balance) issues - having warm water poured in my ears whilst wearing a VR headset is one of the weirder tests I’ve had over the years.
You know your kids best, but try to be as open with them as possible, it can help them understand why Mum isn’t always full of energy, or is a bit sad/grumpy.
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Wow ThereaB thank you so much! Also apologies for all the typos in my previous post- shameful.
The GP did the finger tests and vision piece and said i have coordination and sensation issues on my rhs and to record incidents with words and my face etc to help the dr.
I’ve had a fair few blood tests recently and had been working with a nutritionist to see if it was perimenopause symptoms I could manage/support and for fibromyalgia which the Dr said i had 9 years ago. I’m also being prescribed medication to prevent migraines as they thought it might be that.
Thank you for being so kind
Thanks I was surprised the GP expressed a view but hoping that it won’t all take too long. They said i should see a neurology consultant within 6 weeks. Does anyone have any advice?
Just keeping chasing neurology, hopefully they are quick and will contact you asap. Mine was classed as urgent ‘5 weeks’ but took 3 months due to a lot of errors.
Keep a diary of symptoms and try to write down your health issues over the years. I gave the doctor a long list and was sort of laughed at when I told him to forward it on with my referral, but the neurologist found it very helpful. She picked out the oddest (and symptoms I didn’t think were anything) and said it was classic of ms. At the end of the day you just need to get your foot through the door, get an MRI and hopefully that and your symptoms will give them a clear picture.
it’s not MS, but this is a great website for support if it is