Hi - recently diagnosed with MS

Welcome and introductions
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Hi I have recently been diagnosed with ms, still not sure what type but think primary progressive. I have just been on holiday and come back feeling really awful. Pains in my chest, tight band feeling around my waist, is this a MS hug? Pain has been there a couple of days, sometimes worse than others. Also feel sick and tired! Be lovely to hear and advice/ suggestions as to what I can do. New to all this and at the moment don’t have an MS nurse or anything. Thanks

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For us to make helpful comments beyond “Welcome to the club nobody wants to join” and “Life does not stop on diagnosis” have you had a formal diagnosis from a specialist Neurologist and do you live in the U.K.?

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Thanks for your reply. Yes I live in the uk and I have had an initial diagnosis from a neurologist. They are just trying to work out what type of MS I have, they think it’s primary progressive.

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Hi HDJ, the slight to serious problem about asking some questions on the forum is that none of us are medics. We can share our experiences but e.g in my case the hug hasnt been as bad as you describe and for all I know it could be that you have some other condition that needs attention. Have you spoken to your GP? ( my MS nurse does tell me not to assume that symptoms area result of MS)

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Hi,

Welcome to the forum, sorry to hear about the diagnosis.

I’ve never had the “MS hug” thing so can’t comment on that.

Have you been told what the next steps are? Do you have another neurology appointment, for example? They will need to decide the PPMS/RRMS issue.

As soon as you can I’d ask them for an MS nurse contact. If it is PPMS, there is now a disease modifying treatment that can help in some cases, and if it is RRMS there are quite a few different disease modifying treatments.

In addition to that, you can also ask them for treatment to help with symptoms, whether or not you are eligible for a “disease modifying treatment (DMT)”.

If you are really struggling and the neurology appointment is a long way off, you could a) contact your GP for help and/or b) try to contact the hospital and ask for contact details for the MS nurses (e.g. an email), then contact them.

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Hi HDJ, sorry to hear of your diagnosis. When I had MS hug it was just under my ribs and constantly felt like someone was gripping and letting go over and over and lasted 10 days but I understand everyone has a different experience. I went to GP initially to rule out a chest infection etc. but they ruled that out and strongly thought it was MS. I rang MS nurse who confirmed it most likely was the “hug”, I was due to start Ocrevus in the next couple of weeks so no action was taken. So like others suggested try your GP in the first instance in case it is something they can treat, good luck :crossed_fingers: