"Worried and confused after MS diagnosis"

About: Raigmore Hospital / General Surgery Raigmore Hospital / Neurology

(as the patient),

After being told that I have MS. I am left worried and confused and haven't really been given any idea what to do next.

My partner has been researching on the internet for me as I work away all over the UK. I have been left feeling that thats it, I am going to die and there is nothing I can do about it.

I found out about many herbal remedies that improve the symptoms and increase the production of myelin. Also raw food diets. But this drug called alemtuzumab is what I am most interested in. IS this something that I can get from the NHS?

I havent been given a follow up appointment for neurology yet and I am in a great deal of pain.

I feel abandoned and need more information on how I can help myself.

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Responses

Response from Maimie Thompson, Head of Public Relations and Engagement, Chief Executive's Office, NHS Highland

picture of Maimie Thompson

Dear Scoop

Thank you for posting your views to Patient Opinion. I am so sorry to hear you feel abandoned but I very much hope that we can help. I do appreciate that a diagnosis of MS is a big thing to come to terms with. But one thing that should help a bit is having a bit more support and understanding.

In Highland we have a MS Specialist Nurse and I have been in touch with them about your feed-back. They have suggested that the best thing might be for them to speak with you direct. If that was agreeable if you could give me some contact details then we can get that arranged. They will be able to assist with providing support and information and linking with any other members of the team (GP, Consultant) etc should that be appropriate. You also say that you have not been given a follow up appointment. It is standard practice that you usually won't be given one at the clinic but contacted nearer the time and invited to make an appointment. But again we can look into that as to whether and when you should expect to have one.

I think speaking to the MS Nurse would be a sensible first step. We can look at the specifics for you and then reflect whether there are any wider issues with how we provide support.

I hope this is helpful. You can contact me on maimie.thompson@nhs.net or on 01463 704722

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Response from Maimie Thompson, Head of Public Relations and Engagement, Chief Executive's Office, NHS Highland

picture of Maimie Thompson

Dear Scoop

Our Specialist Nurse for MS in Highland has followed up with me today and asked me to just say again that you should contact her at any point for support and advice. She also wanted to make you aware that there are MS society groups in Thurso & Wick (Caithness); Evanton (Ross Shire), Fort William and Inverness. There are also MS Therapy centres in Wick, Portree and Inverness.

Maimie Thompson

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