Last reply 1 year ago
It's a Ghost in the Machine

I’ve had MS for 26 yrs. It’s gone from almost un-noticeable to relapsing remitting to secondary progressive in the last 2 years.
In spite of countless scans, examinations and consultations… one thing has become quite clear.
NO-ONE has any idea what they are dealing with.
Treatments are for symptoms, not cause.
NO-ONE has any idea what actually is causing the immune system to malfunction.
The causal abnormality/malfunction does not appear on any test equipment we have today.
Yet it is there… somewhere.
My consultant is as oblivious to the answer as I am.
Furthermore, she assured me that NOTHING would make me better, I could only hope for some alleviation.

Well, Frankly an aspirin will work as well as most treatments and do less damage.
All current ‘treatments’ only deal with the symptoms, with little or no regard for what it’s doing to the rest of your body.
I have undergone several , and Plegridy was the worst… it left me legless for 3 days at a time.
Now I just eat only organic foods, and hope for the best.
I am sure that modern lifestyles are a contributory factor, and in years to come the truth about petrol/diesel fumes will come out.
But of course we can’t possibly go down that road, society would come to end.
It will remain a Ghost in the machine.

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stumbler
1 year ago

@sigmadelta , I can’t really disagree with any of your comments.

The brain is a complex and very powerful organ and is not fully understood. Well, not yet.

Our medical professionals do their best, given the tools at their disposal. Current treatments are in two groups, Disease Modifying Treatments (DMTs), which try to slowdown the progress of MS and symptom management.

Unfortunately, once our condition becomes Progressive, DMTs are discounted.

Yes, modern day living is probably slowly killing us. But, that’s progress and capitalism for you!


Anonymous
1 year ago

@sigmadelta how depressing – thanks!


tracyd
1 year ago

@sigmadelta

Have you tried to get involved in the Orecruvus trials and studies ? It’s targetted at stopping progression not symptom management ?


kateybash
1 year ago

I am feeling very low today… living in limbo land with deep numbness in my right hand and terribly painful burning in my legs. At night I could almost cry with the severity of it. @sigmadelta, I am feeling just like you, depressed and unsure what will happen next. You take care today, there will always be that something that gets us all. x


stumbler
1 year ago

@kateybash , no-one should be suffering from pain of this nature. Contact your MS Nurse to discuss this problem and get some medication prescribed


kateybash
1 year ago

I don’t have an ms nurse and my neurologist has never mentioned one to me. I am on pregabolin but it doesn’t help. Since my clear lumbar puncture I have felt even more uncertain. Seeing my neurologist next week so hopefully She will have a plan. Sorry for being negative, that’s not really me but life has really turned upside down.


stumbler
1 year ago

@kateybash , what dosage of Pregabelen are you on?


kateybash
1 year ago

200mg x


stumbler
1 year ago

@kateybash , 200 mg per day? is a fairly low dose. Up to 600 mg per day is possible.

Have a chat with your Doctor to see if they will increase this?


tracyd
1 year ago

@kateybash

What type of MS do you have ? Relapsing or progressive ?

Pregabolin is NOT an MS DMT helping you fight MS – it’s symptom management at best and doing nothing to help halt progression.

If you haven’t got an MS Nurse then you need to see your GP and get them to do the referal immediately for you.

IMO you might also want to ask for an neurologist who will actually HELP you fight back rather than continue with one who appears to be content to medicate you while you deteriorate 🙁

Sorry if this sound harsh, but allowing people to rot away gentley is NOT how MS should be managed 🙁


kateybash
1 year ago

Teacyd, stumbler thanks so much for your comments but as yet I don’t have a diagnosis. I had numerous lesions on my first MRI, however lumbar puncture was clear… now waiting on another MRI. I am in limbo land and hating every moment. !


sigmadelta
1 year ago

tracyd and stumbler are right, pregabolin is a neurological pain killer, how it works is unknown, and not generally prescribed for MS.
You will be assigned an MS nurse once diagnosis is confirmed.
But all he/she will do is oversee any medication you have been prescribed, and generally act as a ‘steward’ between you and the consultant, to avoid you bothering them with your minor niggles which they can do nothing about anyway.
I strongly agree with traceyd about ‘allowing people to rot away’, but bear in mind the consultants have no idea what the hell is going on with MS. So they don’t enjoy ‘Question Time’ debates.

I have personally found that the diet has an effect on MS, for instance…I have been on a semi -‘paleo’ diet for 5 months, which ruled out eggs. I got bored and had a boiled egg one day, and fried egg on toast the second.
The following day I could hardly lift my left leg off the ground!
Yeah, I know..spooky. That’s why I refer to MS as the ghost.
Just gotta find the right exorcism recipe..lol
Positivity is the key, just keep on fighting the bastard.
Your muscles will try and tell you they can’t do this or that..they are inherently lazy..lol.
Make’em do it.. .till you really, really can’t.
You live in your head, and your head controls your body, don’t let your body tell you otherwise!
As stumbler says, the brain is a powerful thing.
Above all..never, never give in.

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