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Why does MS have to be so cruel

Was wondering why does MS have to be so cruel. This could turn out to be a long moan so sorry in advance adn I don’t mean to upset anyone with it.

I used to be so full of life and was always on the go but today i couldn’t even walk down to surprise my youngest son and pick him up from school casue the pain was so unbearable. I have been in contanst pain for nearly two years now and whatever the neuro tells me to go on for pain hasnt worked yet but I can’t see him till April. I have had words with my GP and my MS nurse and they said they can’t do anything until i have been back and seen the neuro.

I’m also having trouble sleeping i’m lucky if i can get about three hours sleep a night and it is now affecting my everyday life.

If anyone could help then I would be very happy to try anything.

And sorry again for the moan

Thanks

Allie xxx

Hi Allie,

So sorry that this stupid disease is going this way for you, not much I can offer in experience of pain, but have you tried hyperbaric oxygen? It might be worth a shot, I find that it helps me with relapses, esp ones to do with my eyes, and other people find it helps with other things too. I also get reflexology once a fortnight - I’m not sure if it helps with the MS, but I find it very relaxing and I do sleep well that night. I get both therapies from my local MS Therapy Centre - there’s bound to be one near you.

Hope you get some relief,

Luisa x

Thanks for your help

I will get in touch with my local therapy centre and see what they can offer me.

I have looked into reflexology but coudn’t fond anyone local to where I live due to the fact that i don’t drive and have to go by bus everywhere.

Allie xxx

God has a sense of humour, this is why I do JD for my therapy

Hi Allie,

Have you tried aromatherapy lavender gel cream from Boots for the aches and pains?

It won’t touch the major pain but I know someone who had Diabetic Neuropathic pain and he said that it really helped with easing the pain quite a bit. He massaged it on the painful areas just before bed and then after about an 1hr would head off to bed and apparently this also helped him to drift off to sleep too.

I know that it is an incredible ‘long shot’ hun but might be worth a go. If nothing else it might help with the sleep problems?

Also, I was advised myself to take an antidepressant to aid the Neuropathic pain I was having. Mine was only slight though and I have to say , so far it has helped ease it, although not completely gone.

Just a couple of thoughts anyway hun,

Wish you all the best n hope the pain goes away soon,

tc

Anna x

I always have a oil burner with lavender on before I go to sleep and it has worked in the past and I still try it now but I will look into that cream. I will try anything once to see if it works.

Im on Amitriptyline (75mg at night) it did work when I first started takin git but it seems like itt has no effect now.

Thanks everyone for there replies

All of you take care

Allie xxx

Hi Allie, Ok I can understand how upsetting it must have been wanting to walk down and surprise your youngest son to pick him up from school and being unable to. Without knowing the situation or the age of your son, I am going to say that this was probably worse for you than your son, I have to say that not being able to walk to school related activities has been my no. 1 regret. I tend to go in the wheelchair or just struggle to walk and stumble about, but the children don’t seem to mind, it is just me, if you know what I mean, so I am guessing that your son accepts you as you are and that he was probably less bothered than you were, so try not to beat yourself up over it. I don’t really suffer from pain so not best qualified to help but have you tried something unconventional like hypnotherapy? Cheryl

Not sure but read your message. I typed history of MS into ‘Google’ and ‘one’ of the responses was -

Historical Information about MS
If you have information that you would like to see here, please contact me at: dee@firelady40.com

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Historical Facts Mulitple Sclerosis Historical Facts History of Medicine’s Understanding

Historical Facts

  1. It was Dr. Jean Martin Charcot (1825 - 1893) who first scientifically
    described, documented, and named the disease process, we still call
    Multiple Sclerosis. So named from the many scars found widely dispersed
    throughout the central nervous system (CNS),but are usually found to be
    arrayed in a symetrical pattern near the Cerebrum’s Lateral Ventricles.

  2. The first patient Dr. Freud ever treated was his former Nanny, who had
    Multiple Sclerosis. “Creeping paralysis” as it was called in those days, was
    considered a mental condition caused by “female hysteria”. As such, little
    or no extensive research was conducted into the mysteries of MS until
    very recent times.

  3. Dr. V.B. Dolgopol in 1938, described a case of optic neuritis, caused by
    severe demyelination and attributed it to Devic’s Syndrone. This syndrone
    was considered to be a subclass of Multiple Sclerosis during this time
    period.

  4. Merck Manual - 16’th Edition - 1992
    States: "Plaques or islands of demyelination along with destruction of both
    oligodendroglia and perivascular inflammation are disseminated through
    the CNS, primarily in the white matter, with a predilection for the lateral
    and posterior column (esp. in the cervical and dorsal regions), the optic
    nerves and periventricular areas.

Tracts of the midbrain, pons and cerebellum also are affected, cell bodies
and axons usually are preserved, especially in early lesions. Later, axons
may be destroyed, usually in the long tracts, and fibrous gliosis - this is
what gives the tracts their ‘sclerotic’ appearance - Often both early and
late lesions may be found simultaneously. Chemical changes in lipid and
protein constituents of myelin have been demonstrated in and around the
plaques.
p.1489
The course is highly varied and unpredictable and in most patients,
remittent. At first, months or years of remission may seperate episodes,
especially when the disease begins with retrobulbar neuritis (optic
neuritis), but usually the intervals of freedom grow shorter, and eventually
permanent, progressive disability occurs.

Some remissions have even lasted 25 years or more. However, some
patients have very frequent attacks and are rapidly incapacitated; in a few,
particularly when onset is in middle age, the disease course is
progressively and unremittingly downhill, and occasionally it is fatal within
a year."

Back to Top


Mulitple Sclerosis Historical Facts
1400

  • the earliest written record of someone with MS was Lydwina of
    Schieden, Dutch patron Saint of Ice Skaters.
    1838
  • medical drawings clearly show what we today recognize as MS,
    but 19th century doctors did not understand what they saw and
    recorded.
    1868
  • Jean-Martin Charcot, professor of neurology at the University of
    Paris, wrote the first complete description of MS and the changes in
    the brain which accompany it.
    1878
  • Myelin was discovered by Dr. Ranvier.
    1919
  • Abnormalities in the spinal fluid were discovered in MS, but their
    signifigance remained puzzeling for decades.
    1920
  • Men were thought to be more susceptible to MS than women.
    Why?..
    Because women were often mistakenly diagnosed with “hysteria”. -
    MS symptoms tend to flair each month for most female MSers.
    1925
  • Lord Edgar Douglas Adrian recorded the first electrical nerve
    transmissions, which helped prove demyelinated nerve cannot
    sustain electrical impulses.
    1928
  • The oligodendrocyte cell that makes myelin was discovered.
    1935
  • Dr. Thomas Rivers demonstrated that nerve tissue, not viruses,
    produced a MS-like illness. This animal form of MS, called EAE or
    experimental allergic encephalomyelitis, paved the way to our
    present theories of auto- immunity, for it demonstrated the body
    can generate an immunologic attack against itself.
    1965
  • White blood cells that react against a protein in nerve insulating
    myelin were discovered in MS.
    Back to Top

History of Medicine’s Understanding of Multiple Sclerosis
1890’s - caused by the supression of sweat; treated with herbs & bedrest;
life expectancy after diagnosis was 5 years.

1910’s - caused by an unknown blood toxin; treated with purgatives &
stimulants; life expectancy after diagnosis was 10 years.

1940’s - caused by blood clots & poor circulation; treated with drugs that
improve circulation; life expectancy after diagnosis was 18 years.

1960’s - caused by allergic reaction; treated with vitamins & antihistimines;
life expectancy after diagnosis was 25 years.

1996 - caused by autoimmune reaction possibly linked to virus; treated
with steriods & immune system regulating drugs; life expectancy after
diagnosis is essentially normal for most.

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© Copyright 1998 - present
Permission is hereby granted to MS Societies and all MSers to publish information from these pages provided that no financial

reward is gained and attribution is given to the author/s.

It been around a long time - I suffer similiar!

Marcus.

Chery

My youngest is 9 and he enjoys my little surprise visits to pick him up. He only ever sees me as his mum and if his friends say anything to him at school about me not walking like everyone else or even with my stick he just tells them that his mum is special and her legs dont work right. I am willing to give anything a try to try and help with the pain and everything else. So thanks.

Marcus

Thanks for the info and I will look into it further. I just wish that someone could take the pain away.

Thanks again everyone

Allie xxx

Hi Marcus

MS is a cruel disease, my mantra is ‘I can do this’ AND this is, do my very best to have a normal life. Pain with on end with small relief is gruelling, I expect to be in pain ALL the time and I am. I get on with things, yesterday I took 2 paracetomls and what I thought was MS pain was sorted by these simple 2 tablets - I still had the MS pain but not whatever the other pain was!

Lack of sleep is a bitch, I listen to a relaxation tape when I wake, don’t dispair YOU try thinking outside this hellish box. try grabing this particular monster and shake the s**t out of it, you can do it.take care, M

Thanks Allie. (Theoretically) - MS has been around since ‘THE MIDDLE AGES’? TIME FOR A CURE?

Marcus. x.

Hi Allie

I am not going to be much help I’m afraid, but my main symptom is pain and at the moment I am trying Pregabalin which my Neuro put me on a few weeks ago, but I am having problems at the moment with my hands swelling up and I believe that this has got worse as the dosage has been put up. I also take Amitriptylene, but only a very low dose at night as the pain keeps me awake.

I don’t know if your main symptom is pain, but not so long ago a GP told me she did not believe that I had MS as it is my main symptom ( among many others )

Jaycie x

Your son sounds wonderful Allie

I don’t understand why the MS nurse can’t contact your neuro in advance of your appointment for advice on meds and to check if she/he should refer you to a pain clinic. It seems completely ridiculous that you have to wait till April and surely it’s the sort of thing MS nurses do all the time?!

Your GP could write to your neuro at least?

It’s absolutely rubbish that they can’t do anything until you’ve seen the neuro: they can ASK!

I hope you have a better day and can surprise your son at school very soon.

Karen x

My MS nurse has tried to get the appointment earlier and also asking about changing my meds but he said I have to wait until April. The GP wont write a letter cause I never see the same doctor twice.

I’m on the waiting list for the pain clinic and have been for the last 6 months.

Both my sons and my hubby have been great with all of it and we always said from day 1 we would be open with our boys.

Thanks again everyone

Allie

Hi again Allie, your son sounds great, do you think a little mobility scooter would maybe help you get to the school to surprise your son. Also have you tried a Tens machine for your pain? Cheryl:)

Thanks Marcus for that little piece of informative research

Who would have believed it… C15 Dutch Ice Skater . Well, I must say for myself this disability really does Cramp my style !

Its interesting to note that the imune system attacks the insulating walls of the nervous system which may be brought on initially by a virus.

Sounds ‘earily’ possible to me (about being brought on by a virus) but like ‘you or anyone else’ (I don’t have an effin’ clue!

Marcus.

Same here I dont have a clue all I know is that I’m not going to face the pain head on and live each day like it is my last.

And hopefully have made some friends on here as well.

Thanks again

Allie xxx

Dear Allie,

I was taking a last look at your request. - Pain. Back in the days of my youth, about 30 years ago when I was a student at university - cannabis. It is still 'illegal but it could relieve pain.

Marcus.

Hi again Allie, me again, sorry, just referring to Marcus’s last comment about cannabis, you could try Sativex,this is cannabis based and may help. I take this for stiffness but don’t have pain so can’t comment on pain. I think you will struggle to get it on the nhs but you could try it privately from e-med. This is what I do. Cheryl:)