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MS Patient

Story from nhs.uk

"MS Patient"

About: The Royal Victoria Infirmary / Neurology

I was diagnosed with MS around 18 years ago.

Earlier this year I developed severe breathing difficulties. I rang the ms nurse and it took several days to get a reply, during which time I thought I was going to die. Despite having informed the consultants of breathing difficulties in the past - like having a belt tied around my chest, the consultant said it was probably nothing to do with ms and to see my GP. I did that and got referred to a chest specialist. Went through a range of tests including a really horrible one which was getting a tube put into my lungs with a camera on the end. In the end the chest specialist could not arrive at a diagnosis and prescribed a course of steroids. The steroids helped a lot and my breathing improved but months later it's still not 100% back to normal. I strongly suspect that it was something to do with ms and should have had a head MRI straight away to check for new lesions and if found, prescribed IV steroids.

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Responses

Response from The Royal Victoria Infirmary 6 years ago
The Royal Victoria Infirmary

Submitted on 03/10/2017 at 12:58
Published on nhs.uk on 05/10/2017 at 04:12

Thank you for taking the time to share your experience of the care provided to you by the MS Team at the RVI.

We would wish to apologise that you had to wait several days for an MS specialist nurse to return your call. Whilst the specialist nursing team do endeavor to provide a timely response to patients’ concerns regarding MS, regrettably, it is not a service which is set-up to provide an emergency clinical response, and we are sorry if this was not made clear to you.

We also apologise that you feel breathing difficulties related to MS were overlooked.

Owing to your comments being posted anonymously, we are unable to provide specific feedback in that regard.

However, may we assure you that breathing problems are incredibly rare with MS and it is, therefore, considered good practice that shortness of breath is further investigated as being potentially due to another issue.

The information you have provided suggests there was a respiratory cause to the shortness of breath rather than an MS relapse, although the Consultant team will be happy to discuss this with you during your next review.

Again, it is incredibly rare for IV steroids to be commenced to treat MS and that is something which could also be discussed at your next review.

If you would like a more detailed investigation and response into these issues ahead of then, please contact Miss Powell, Directorate Manager, on 0191 282 5718 who will be happy to discuss this with you and take some more details so that your concerns can be looked into in more detail, and a more specific response offered.

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