If his symptoms were picked up earlier tho would he still be at the stage he at now his Edds is 7 so bit worried
Thatās a fare reason Sue. It is a life long condition with no cure. It freaked me out a bit. I remember when I first started posting 5 years ago, when I was first being tested what version of MS I had. Worst time of my life, not knowing why I kept falling over & didnāt have the strength to get up. Quite shocked after having 3 MRIās & waiting 6 months at a time for different results. I tell people I donāt have PPMS now, because far to many people I knew started saying they had PPMS too & itās not something anyone should want or claim to have, purely based on what Dr Google finds in a search or comparing their feelings with someone with a genuine diagnosis. The Neurologist should give results, not a support group forum. Thereās way to many trolls in this world.
Terry
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I just think that once you get diagnosed you have no help as ms nurse hard to get hold of and when you do they donāt tell you docs might not give you anything. Also the wait times to see neuro doc is ridiculous! Saw him in April yet still no follow yet. So my main issue is if you on no treatment for managing symptoms are you supposed to watch someone you look on a gradual decline? Also anybody had ocrevus? Neuro doc did mention he fit criteria for it but it not available yet? This is rubbish tho as my daughter contacted NICE board who told her it can be given now if neuro doc request so will be asking when finally do go back see him
Hi there. I was dx nearly 5 years ago & now see nobody. After following the medical guidance, I nearly died.
My turn table moment, was when I took control.
Changing diet, fresh air, exercise & keeping the brain firing. By doing things, that get the noodle thinking.
There is no medication for PPMS, that has any proof of working. Yet the holistic approach, has masses of good results.
From being a vegetable, unable to move on a sofa. Taking anti depressants, Baclofen & loads of other alphabetical jargon.
To getting outdoors, kayaking, doing DIY, trips to awesome scenery & drinking green smoothies. Keeping the garlic, Onion, Broccoli, Mushroom & fish industry going. Going Hazel nuts about Bananas & fruit. Soaking in sun & water.
I see people waking, taking cereal bowls of medication & getting worse on a daily basis.
Choose to progress the right way & things will change.
Having a good spell on my Circulation Booster, before an invigorating cold shower & a swig of Omega 3, Krill & extra virgin oil.
Listen to your body.
Terry
Ocrevus is not yet available generally for people with PPMS, itās expected to get NICE approval in July this year. Trials have been, and are still, ongoing for PPMS.
It is the first disease modifying drug which has even the smallest potential for improving symptoms for people with PPMS.
Given that this drug isnāt even widely available yet, I canāt imagine that your husbandās disability would have been halted by earlier diagnosis.
Although, saying that, at least he would have had the benefit of directed physiotherapy if heād been diagnosed sooner. Which might have helped, but even thatās not definitely true.
PPMS is, for many people, a dreadful downhill descent into disability. Itās impossible to say though that earlier diagnosis would have helped. Just as itās impossible to predict the disease course for anyone. MS can be a very cruel disease. And one which affects the whole family, not just the person with the diagnosis. It must be very difficult for you to watch your husbandās increasing disability and to feel so powerless to help.
All the best.
Sue
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