Supporting my partner who is awaiting MS diagnosis

Hi everyone, I am new to the forum. My husband is currently awaiting a diagnosis, the neuro consultant says it is “probably” PPMS and the scans and test so far are supporting this, but we don’t have a confirmed diagnosis yet and are awaiting an appointment to see the neuro consultant again. Being in this limbo is horrible but appreciate it takes time to confirm, and from reading other posts we seem to have got quite a long way relatively quickly. My husband first noticed a drop foot early this year followed by weakness in his left arm and leg and loss of dexterity in his left hand (he is left handed which makes this worse). MRI scans show demyelination on his spinal cord and changes in the brain consistent with active demyelination. He is 51. So far he is coping remarkably well having this hanging over him but it is difficult, particularly as his work are not very supportive. I am doing my best to support him (he requires assistance in the shower, dressing etc) as well as working full time, walking the dog twice a day, doing all the housework and cooking that we used to share etc. I’m happy to do it but with the stress of the situation it’s exhausting. At this point we are not expecting any miracles so will just be happy to get a confirmed diagnosis. Happy to chat with any carers who are in a similar position. If it does turn out to be PPMS what medication is there (if any)and how does it help? He has gone from normal to noticeably disabled in 6 months so I really worry about how bad it will get and how quickly if there is no treatment. Sorry for rambling, this is still very new and terrifying!

Hi Mousey, I have Relapsing Remitting however, and first things first : there is a treatment for progressive - Ocrevus, the details of which you can find on the MS Society Website and similarly on the website of the MS Trust.

The MS Society is also funding / running a multi arm programs of research into treatments for progressive MS ( they call it the ‘Octopus’ ( as in multi arm) programme. Details on the website.

The MS Trust also a has a leaflet/ booklet on PPMS.

There is also a forum section on PPMS - I know that at least one of the people who post on that section has PPMS and also posts on other sections so I expect you will hear from them directly.

Hi Mousey, Im in a very similar boat to yourself. Hubs didnt recover from a bout of covid, we thought long covid however turned out after tests were done as memory was affected etc a ct scan found a lesion, then mri confirmed tumour but neurosurgeon also pointed out over 6 scarring spots. Im a neuro patient myself and know what to watch out for and soon as I saw it I knew what he was about to say, we were asked if we knew what MS was, ive been advised by others he wouldnt have mentioned it by name if he wasnt certain of what he was looking at, even though he has referred to general neurology as a formality for confirmation. That was all around april, he has had a craniotomy few months back, feels he has came out of that worse with the complications.

Work is chomping at the bit to get rid as he has been off since last year with all the tests, symptoms, complications etc. We are in limbo, neuro lists here are long so could be next year before we get a proper diagnosis for him and find out type etc, it sucks, he is so frustrated. Neurosurgery are messing about too with stuff post op. Im already a carer for another family member, im also disabled myself, he took me on knowing all this, we didnt expect this past year to pan out how it has. I never thought id meet the right person and get married until we met a few years ago, I thought everything was going to change for the better, met my soulmate etc.

If they got a move on and gave it to us bluntly, I can deal with anything thrown at me, I have over the years, its the limbo thats getting to us. I have conditions with similar symptoms to MS so ive been giving him a crash course on not to make the mistakes I did early on with fatigue etc, he says it helps immensely that I to a degree know what he is going through right now. I wasnt diagnosed with my conditions for many years and struggled alone. I get my own independent support so already have help to keep my household ticking along. Have you asked social work/services for a carers assessment in your own right? You dont need a diagnosis for your husband nor does he have to be getting support from them, same as with disability benefits its how your health affects daily you not the label. With hubs its a case of we dont know how much was/is the tumour(they couldnt remove it all) and how much symptom wise could be the MS if it is that. 1 of the scariest was when he couldnt get his words out, stuttering badly and he has little relapses especially when stressed, I brought the wedding forward to earlier this year as didnt know how bad it could get and wanted him to be able to say his own vows himself. He was professionally supporting others in his work capacity now in a matter of months he is the 1 needing support, I try and get the frustration he must feel with that however its probably way more than I can comprehend. All I can do is just be here, he is a gem, he is always there for me too regardless of what either of us have going on we are there for each other and its all we can do x

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Sorry to hear what you’ve been through, it’s so exhausting and frustrating waiting for answers isn’t it. Hubby and I have been together nearly 20 years and married for 16. This is horrible but it’s one of those things life throws at you and you have to make the best of it. He would absolutely step up and look after me if it was the other way round. I just hope that I can cope as well as he does. It’s definitely not how we envisaged growing old together, it’s a big adjustment. X

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