@ZoeyLouise 

Last reply

ZoeyLouise

Wait times

Hi Everyone 👋 I'm new here, I've recently been diagnosed with tumative MS and was started on a course of steriods to reduce the inital inflammation on the right side of my brain which was causing me left sided weakness in my hand and arm. My question is my neuro consultant referred me to a MS specialist team to potentially start disease modifying therapies. I know they had a MDT on Monday but I've still not heard anything yet. When did people finally hear and get input from their MS specialist teams? I've been off work for a month and due to start back next week and I was hoping I would of heard something by now for strategies with my fatigue. Any comments would be greatly appreciated.
@Stu1980

If I have any MS DMT (Disease-Modifying Treatment) queries , I either attempt to speak to my MS nurse or email them with my questions. The course of steroids will hopefully reduce your initial inflammations on the brain and you'll soon see improvements in your hand and arm. Your MS team of clinicians will discuss which DMTs are available to yourself and the practicalities for taking it. Once you're happy about a DMT, they'll prescribe the right treatment for you. Sometimes there may be unforeseen delays with the staff or administration which may be affecting their response times. I really hope that you'll hear from them soon and you can begin the correct DMT that fits well into your everyday work/life balance. Hope this helps, keep being strong and positive.

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@bambi858

Hi Zoey, I also have a right sided T-MS, steroids certainly helped a lot. I was initially sent to neurosurgery as they thought it was a tumor, but it took about 5-6 weeks after that to see the neurologist and MS nurses to start a DMT. I’m UK too I see James Cook hospital (Middlesbrough), the nurses are great but it’s going to be 18 months due to an admin f up to see neuro consultant again. I too only had a mo th off before going back to work, but ensure that you speak to occupational health and bases to put a plan in place to manage fatigue etc.. I take screen breaks and avoid full days of teaching if I can, but able to mention to work if I’m not doing well.

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