Undiagnosed but likely to be soon

My girlfriend is under investigation for MS. I think it’s likely that it will come back as definitely MS. She has a lumbar puncture tomorrow and Im very scared. I’ve believe she has MS for a while but the idea of her finally being diagnosed is getting to me. Just don’t know what to do with myself. I’m worrying all the time about having to care for her, whether I’ll be good enough etc. We are only in our late 20s and it worries me that this will consume the rest of our life together now. Just wondering if anyone has any advice for me on how to cope with a new diagnosis

Hello

Ok, so your girlfriend may have MS. This is still not definite so don’t get yourself in a tiz about it until and unless it’s confirmed.

Supposing it is. The most likely subtype of MS (85%) is relapsing remitting. This means she would most likely be diagnosed with RR. There are disease modifying drugs (DMDs) now available for RRMS (see https://www.mstrust.org.uk/about-ms/ms-treatments/ms-decisions-aid ) These are designed to reduce the number and severity of relapses.

Assuming then, she is diagnosed with RRMS and starts a good DMD, she may not have a further relapse for 5 years, 10 years, maybe ever?? Thus your lives are not consumed by MS. Yes, you’d both be aware of it, but it needn’t take over.

Or she may not get on with the DMD or be diagnosed with a more progressive type of MS (see https://www.mstrust.org.uk/about-ms/what-ms/types-ms ). This could mean she doesn’t have relapses. Instead, there could be 1) a gentle progression of disease and symptoms over years, or 2) a faster progression.

The biggest problem with MS is that it’s utterly unpredictable. This is the reality of what you and g/f have to live with if she’s diagnosed.

If you start out by talking about the disease and how you both feel, honestly and openly, you can get past the diagnosis. If you love each other. If you don’t love each other enough, or are unable to communicate your feelings (either of you), then it might be better and fairer to be honest about that from the get go.

In fact, even if she’s not actually got MS, but you fear that it will take over your lives and you’re unsure you want to be in a relationship where MS is part of your lives, then it might be better to confront that right now. Because life is unpredictable. If she’s not got MS, gets over the symptoms that have brought this shadow into your lives, then either of you become disabled through illness or accident, you really won’t survive it.

So, I suppose what I’m saying is: think about you, think about her, think about your relationship, think about communicating. Decide together what you want from life and whether you want that life to be together. And under what conditions, ie, will your relationship survive illness and/or disability?

I wish you both the best of luck while you work this one out.

Sue