Hya everyone

My daughter , 28, has just been diagnosed with, within the week! It seems like she had numb right leg about 8/9 years ago, and having had an MRI, there were shadows on her spinal cord at the time. NOTHING was followed up, she went on tour all over the country(she’s a musician and singer/songwriter) and it was quickly forgotten about! Cue about 6 weeks ago, she was taken to hospital be a she had extreme vertigo, numbness in right arm, hand, fingers and right leg, plus all weird sensations on her face, not painful at that point, n she was extremely dizzy, wanting to walk round in circles with her blurry eyes.After 3 days of waiting rooms and having to sleep in the floor in said waiting areas, she was finally given a bed. She couldn’t walk properly and an mri plus a dye test showed lesions in her left side of her brain,but no patches in the spine so far. She was diagnosed there then,and just waited fortnight for lumbar puncture results that confirmed everythIng. What I’d like to know, is WHY is her body STILL under attack 6 weeks later, with new and worsening symptoms occurring daily? I thought Ms attacked, left damage then beggared off again to return whenever conditions were ripe for it? So I know nothing about this awful disease except for all my reading but nothing about this is mentioned! :weary_face: She’s trying to continue to work but had to cut her he’s down to just 6 a day at most, whereas before, 14 hrs days weren’t rare, because she just LIVES her job. She’s self employed, teaches music and singing (fully qualified vocal coach), so had to work to survive ! ATM she still has worsening leg and hand numbness, so she can’t play her keyboard or guitar, and is very badly affected by tiredness n fatigue and anything stressful makes symptoms a million times worse! She has opted to follow the OMS Diet protocol first, refused current treatments atm.as she has read all about, and heard from bandmate with ms, about the horrific side effects of these drugs, so had currently opted to go holistically drug free, as she said that if she went 8 years on a musicians crazy lifestyle, not eating properly or regularly and crazy work hours, then looking after her body well and holistically, surely she can go longer between attacks? My question as a worried and supportive mum, is HOW LING will this current (2nd) attack last??! When will it stop for her? Surely they don’t continue into one long permanent attack??? She’s back teaching her children and adults, but minimally, and can sing but cannot play instruments, she’s heartbroken. which in turn obviously breaks my heart too!! Can anyone help us? We have no ms nurse or even a decent doctor, neurologist doesn’t want to know as she’s not following his idea of treatment :sob::sob::sob: HELP? please, if anyone can, I’m navigating this totally blind :weary_face: xx Thankyou for ur time in reading to end xx

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I am so sorry that this hand grenade has been lobbed into your daughter’s life.

There are a couple of your points I want to comment on. By the way I have had MS for quite a long time but I am no expert and only have my own experience to go on.
Firstly, MS certainly can go off with a bang when it wants to. I myself had a flurry of relapses to start with and then again as the first disease modifying treatment I tried had stopped working. Then it was wave after wave of disease activity - just as one thing is easing off another is in full flow and another is in the wings, tuning up. All that went quiet when I got on a drug that really worked for me. It has now stayed quiet for 15 years.

The second point is a related one and it concerns disease-modifying treatments. When MS means business - and it does sound as if your daughter’s is up to no good - a person just has to do everything she can to protect herself against permanent damage. That means fighting on a range of fronts: making lifestyle changes - managing stress, managing sleep, eating properly, getting plenty of fresh air and exercise, all that. All those things are important - I think they’re essential. But for many of us they are not enough. There are powerful drugs that can stop even very active MS (like mine) in its tracks before strategic permanent damage is done. Prevention is the only show in town with MS - there’s no getting the toothpaste back in the tube once permanent damage is done. For me, any realistic holistic approach includes all the life choice things plus conventional medication. It’s not a matter of lifestyle or drugs, it’s both. It’s not an ‘or’, it’s an ‘and’.

Please, please try to encourage your daughter to consider disease modifying drugs. They really are her best shot at keeping well for as long as she can and doing the things she loves for as long as she can.

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Hi @sharonlever70 I agree totally with what @alison100 says about Disease Modifying Treatments/ Drugs. Do everything you can to encourage your daughter to start treatment as soon as possible!

You say that your daughter has been scared off the idea of drugs by a band mates stories about the horrific side effects. I can tell you with 100% certainty that yes, some people find that the side effects of some drugs are too much and have to change to other ones but most people are quite happy using their drug. I’ve been using the same one (Avonex) for over 19 years!

I do feel a bit rubbish the day after using it but it’s no worse than say a moderate hangover and I just take Paracetamol.

Not quite true about attacks clearing off . At the fundamental level, MS is a disease/ condition in which our own immune system attacks the nerves in our Central Nervous System (brain and spinal cord). Those attacks destroy the myelin ( sort of fatty tissue) surrounding the nerves and this results in the nerve not being able to send and receive messages/ impulses as well. Some attacks don’t leave us with any noticeable symptoms- younger brains in particular can find new neural pathways. Other attacks result in very definite symptoms. These symptoms can die down but not completely and are always with us!

In my case, my first major symptom was more or less complete loss of vision in my right eye. Over a period of maybe 3 months the vision did return- but not completely!

My second noticeable symptom was suddenly finding that after walking for about an hour, my right leg couldn’t move properly. That symptom never died down and I’m now limited to maybe 30 minutes of rather clumsy and difficult walking.

Sorry to be blunt but looking after her body well and holistically will absolutely not stop MS and it’s ‘attacks’ and the longer she goes without any treatment the worse her MS is going to get!

I follow the OMS recommendations but - do ask your daughter to recognise that a key recommendation is: taking your Disease Modifying Drug!

If you can then do everything you can to assure her that the side effects of treatments ( of which there are now over 20) are not horrific. If one of the treatments doesn’t suite her then she can easily move to a different one.

If you can find a way then do encourage her to recognise that the very worst option is ‘no treatment’ and get her to read up on the usual progression of MS without treatment. If necessary then scare her into recognising that without treatment it’s only a matter of time before she becomes bed bound and totally dependent on others ( something my Aunt experienced with her MS in the days before there were any treatments).

I would be more than happy for your daughter to contact me through the message function on this forum and if you want to ask me anything then please don’t hesitate to ask.

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