Multiple sclerosis

[Mudskipper]

I tend not to post about personal stuff on here, but thought there was a chance someone had experience and might be able to give some insight/advice.

My girlfriend has just been diagnosed with MS, which came as a shock to me, as although she'd had symptoms and MS had been mentioned, I (ever the optimist) was convinced it would just be something minor.

She's only been diagnosed today (after a fucking awful bank holiday weekend of hospitals and practically fighting the doctors to get her an MRI scan asap - she couldn't drive or walk straight at this point due to being numb down the entire left side of her body) so hasn't started any meds yet (steroids?).

Anyway, she is a regular cannabis user and I have heard of MS sufferers benefiting from weed. I don't know much about it though, only a few studies been done and I've only been researching for an hour so far. What I'm trying to find out is if

a)being a user already, it wont help in the same way
b)it should be avoided cause it could clash with other meds
c) it may help and she should continue (maybe after trying meds on thei own first)

Any anecdotes anyone has regarding weed and MS, or just MS, would be great. I'm trying to be as useful as i can by finding this stuff out - her mum knows a lot about medicine etc but is very anti-weed, so i feel its my role to check this stuff out.

Cheers , this callsigns off for a well-needed 6 hours sleep now
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[Scotsman37]

Multiple sclerosis
From Wikipedia, the free encyclopedia

https://en.wikipedia.org/wiki/Multiple_sclerosis


About MS - National MS Society

https://www.nationalmssociety.org/about-multiple-sclerosis/index.aspx


Multiple sclerosis - Mayo Clinic, USA (highly respected in USA as they set the standard for medical health care that all others follow)

https://www.mayoclinic.com/health/multiple-sclerosis/ds00188


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DO NOT BE USING ILLEGAL DRUGS - you may find that her mental state will worsen with continual use of such a drug.

Here is info about the dangers of using cannabis

https://www.nhs.uk/Livewell/drugs/Pages/Cannabisdangers.aspx

https://www.thegooddrugsguide.com/cannabis/dangers.htm

[Mudskipper]

Thanks for the links.

I'm starting to get a handle on it now but need to read more about the treatments used, I tried to read some info last night and it made my head spin.

Not really concerned about the 'dangers' of cannabis though at this stage (15 years of use and not mental yet) just want to find more out about the studies tbh.
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"You're clumsy, you eat too much and you behave like a 12 year old boy. But you know what? Every once in a while, you find a thumb."

[Suitor_Stu]

Wow, that's quite a heavy one to take. On the up side though, there are much better meds available today than there ever have been before and it is a whole lot less debilitating as a condition than it used to be. Everyone is affected in s different way too, and as with most chronic conditions there is always a period of adjustment (for everyone involved) right at the start where things can get a bit tense - due in combination to actually getting used to the diagnosis and whilst everything gets straightened out with the meds/treatments (as you have seen there quite a number of different combinations and therapies on offer) - so just be there for her at this point, but realise that she may need a bit of space too...

Oh and FWIW, I believe the cannabis in MS thing is more of a painkiller type effect rather than actually curing the disease per say.

Stu

[GhostRider]

These might be more helpful than teaching you how to use google and "Oh Noez dont doooz the drugz!!!111oneone!"

Real people, real stories FTW:

https://www.youtube.com/watch?v=t4nl5h2Hn0U&feature=related

https://www.youtube.com/watch?v=fNthwTv2LjI

https://www.youtube.com/watch?v=NEOoa6Q4Bds&feature=related

https://www.youtube.com/watch?v=91W4GwHqKpA&feature=related

Sorry to hear about this, my Nan succumbed to MS, though this was before I was born, however, my mom told me more than enough to be able to sympathize with you.

GhostRider
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[Annabella]

There was a write up of a study in New Scientist Magazine a few years ago, took a while to find it as I couldn't remember when it was!

https://www.newscientist.com/article/dn6387-cannabis-truly-helps-multiple-sclerosis-sufferers.html
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[Mudskipper]

Thanks, I'll get my teeth stuck into all that info.

Annabella - that looks interesting, seems to tally with what I've read so far, in that some people think it's pretty much just a pain easer/de-stress effect but there is some evidence it can reduce the damage to nerve cells.

The trouble with studies is the stigma cannabis has as being illegal/a loser drug for hippies and therefore there's reluctance to treat it without prejudice in trials etc.

Which in my view is fucking pathetic, NHS will dish out nasty addictive opiates left right and centre, but anyone suggests that weed might have medicinal use and they get all uptight (this further fuels my conviction that there is a government conspiracy and propoganda war regarding weed, but that's for another time).

She is taking it really well at the moment, she also has some good friends and family who have already rallied round. It's just such bad luck as she's such a healthy, active person normally, full of energy and always racing round at 100 mph organising everything. Seeing her wobble along a corridor at snails pace was quite a shock.

Shall continue with the suggested links, thanks again
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"You're clumsy, you eat too much and you behave like a 12 year old boy. But you know what? Every once in a while, you find a thumb."

[killa]

Cannabis helps my friends dad with his back problems. Sound as you like and someone who has now looked more into the positive effects of weed.
Don't just read government links about weed, it's not the whole story, doctors dont recommend weed obviously.

Continue with the smoking i say, it won't do more harm to someone with MS, just the obvious dangers of smoking in general.
Look at accounts from real people, not government fed literature.

All the best to your good lady
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[Blackwolf]

My mum has MS, i know its a bit of a shock at first. but i guess with everything you learn about it and live with it. there is aid you can get and in a way small thinngs that make life easier.

i think it is steroids she will take. my mum went down on the left hand side, can/hsa she regained contorol? she may not bealbe to fell things as well as she used to to you wuill have to wathc ot make sure she dosnent burn her hands.( had to remind my mum several times)

will add more later bit strapped for times ATM. anything you wan tto know? i can send an email to my mum


Just be strong fer her now
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[Mudskipper]

[Mira]

My mum has had MS for 28/29 years!She's a trooper, she is still walking round and doing stuff. She has always said her method is that she has a strong will and has decided this won't beat her. Also don't let things stress you out (if you get depressed/stressed about it you seem to go down hill faster). Learn new limitations and don't over do it.

As said earlier keep an eye out for hot things my mum is always running water too hot!

B12 supps could also help with MS symptoms. (I recommend buying from iherb (us net shop) get the Jarrow Formulas, Methyl B-12, 5000 mcg) and Vit E is also recommended by my mum.

Has your missus had her B12 levels checked? Pernicious Anemia can mimic symptoms of MS but is treatable with B12 injections and folic acid and iron. Try and get blood tests to include B12, Folates and ferritin levels.

Hope she's feeling better soon!

(If she wants any more advice on living with MS my mum has said she is happy to answer any Q's. pm me and I'll pass them on!)
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[Blackwolf]

[msgander]

Sorry to hear about your other half, its quite a shell shock at first and quite daunting.

Blackwolf above is my nephew his mum is my sister (if that makes sense). Sister was diagnosed with MS a few years ago, not at any real age to be honest. She had an inkling having had numbness and tingling in her hands for some time, and her toes. She then had further problems resulting in numbness down one side and then just went weak and ended up in hospital from there. Even then they still couldnt officially diagnose it until MORE symptoms appeared, hence the very difficult diagnosis period takes ages until they can confirm 1) its MS, 2) the type...which they still wont be sure on probably at this stage!!

It is great that you are finding out about it and being supportive, that is the main thing, my sister didnt have that support and still doesnt from her OH, so, she had to do pretty much all research and asking of medical experts on her own, and still pretty much keeps day to day stuff going in the house, not to mention holding down a job for HMPS!!!

She didnt work for some time, and a lot of the issues were due to confidence. Getting MS is such a knock back, but please dont see it is as "the end". Think of it as more of a "condition", something she will have to learn to live with and deal with on a day to day basis. Initially I was mortified when my sister spoke to me, but if i had known how well she would cope, I wouldnt have believed it.

Some cases are obviously worse, but your OH sounds very similar to my sister and the road she travelled.

Its not easy (obviously) and emotional stress is far worse for MS sufferers than physical stress, however, too much exertion can affect them. Your OH will find her weaknesses over time and MUST listen to her body, if it says I need sleep, she needs to sleep and not fight it type of thing! If it says I'm walking too fast, slow down. Her body will tell her what it can cope with which will be less at the moment and she may be surprised if "episodes" disappear or come back as they please.

My sister sometimes has "pain issues" which drugs can assist too. Sometimes they just go away as fast as they came, sometimes they are hellish. Sleep can be a problem, she can wake up anytime wide awake ready to go, then be exhausted for the rest fo the day or night.

Your OH will feel really knocked out by the gradual acceptance of having MS, she will probably feel really unattractive and lack confidence because of the condition as she just wont feel lively and 100%.

Your support and love unconditionally is the greatest thing you can do for her. Your understanding of the condition and your willingness to support her is fantastic.

Any questions PM blackwolf or me, my sister did a LOT of research at the time and continues to (she is currently on disease modifying drugs which "can" halt the condition, not guaranteed obviously), I have no doubts that she could always point you in the direction of assistance of good professionals that know the "system" or the MS society are also really good.

Several years on, you wouldnt know my sis had MS other than she gets tired still, concentration isnt as sharp as it was sometimes, and we all worry about her incessantly and drive her nuts!!! - she works full time again now and is one very amazing lady, who sorts out everything including her 3 kids (3 teenagers), 3 dogs, finished building a house over the last few years and generally helps everyone else out if she can!!

Hugs to you and your OH, and do shout if you need any pointers.
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[Blackwolf]

Just the person.. didnt know you where on here

I hope is will all be ok and sorted( to as best as possible)


Dont give up, keep strong
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[Wafer_Thin_Ham]

My aunt has MS, and I'm pretty sure she smokes a bit of pot, although I'm not 100%, seems to work for her though.
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[Leggy_Girl]

I'm sorry to hear that your gf has MS. You sound like a fantastic partner though because your already doing everything possible to help her and that's brilliant

I'm sorry if this is a little off-topic. I don't know anything about the weed side of things so i can't give any advice or an opinion either way. My advice is that exercise would probably be of benefit (once she gets the right meds and is settled). We have a few ladies with MS who come to the gym that i work at and they have gone from strength to strength. One lady in particular lady went from a wheelchair to 2 walking sticks in the space of 4 months, and she now only using one stick (6 months in). This lady always says that she's so much better since she started doing an exercise routine 3 times a week, and she's had MS for 9 years (been going to our gym for a year now).

If she wants to do some mobility and strengthening exercises at home i'd be more than happy to create a program/ regime for her. Nothing strenuous, just something to help her day to day. Start light and progress from there. No problems if not though! The offer is always there if you want it!

Take care!
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[m0l0t0v]

My mother suffers from MS. She was diagnosed at the age of 19 if I remember right. She could walk for quite awhile but as she grew older it did get worse. She used to play the piano brilliantly as well but her manual dexterity has since gone. Now she's stuck in a wheelchair pretty much 24/7.

I can't comment much on the meds or anything. All I know is that she's on a lot of different ones and she used to take steroids (prescribed) but didn't do much/anything. Heard about the weed thing and strangely enough a guy on a wheelchair on a sunny day in Milton Keynes offered her some of "the good shit" and it will ease her off pain . With MS I've tend to find that different meds work for every person. For some people, steroids work, for some people weed works but for most (or what I assume) it doesn't unfortunately.

And as someone else posted before MS affects everyone in a completely and utterly different way. My mother cant use her legs, but she still has feeling (quite often a lot more than normal). Her manual dexterity and handwriting got worse but she's fine for everyday life. Handwriting wasn't always her forte from what I've been told anyways.

One thing that just comes out of nowhere is how it affects her mentally. A lot of people sometimes think that she isn't disabled and don't notice the wheelchair because of the way that she is. She's a really bubbly and friendly woman. I'd say most of the time TBH. But there are times where she gets completely and utterly fucked off for no reason. And it's not PMS

Conditions of the wind can affect how she can manage to stand up and transfer. Same with temperature and how wet/dry/moist the area is.

Also, just for some of the unclear, the steroids and cannabis is prescribed

What I would say is the bets bet is what Leggy_Girl suggested. My mum got worse from when I started growing up. In Colombia she used to walk around with 1 or sometimes 2 sticks. Then moved back to Scotland and it was harder for her to do so, so she used a wheelchair more often. Then moved down to England and she really did start to use a wheelchair more often than not. And a few years ago got an electric wheelchair. And she used to be able to climb 2 flights of stairs. Not easily. But now, I don't think she can do 2 steps

I don't blame her. She's been really really strong and focused on everything else other than being able to walk. She's helped raise money for the MS society. Recently had a "cake bake" day where she managed to raise 600 in our home. All by her wee self. With little (and I mean little) help from me. Also been fighting against councillors and parish councillors to get buses go through our rural village and other villages as well. Apparently, they've never met such a feisty women before who gets things done

Bless my mum, proud of her.



Even though she can still be an utter bitch at times and extremely unreasonable.

But like I said before, exercise is the best bet, in my opinion and experience with my mother. Best of luck with everything
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[Blackwolf]

Reading Pablos post reminded me of something.

i know its a bit of a dirve for you. But here in little old ofxordshire, there is a place called miltonpark. they has this MS thing. my mum went said it was realy good. i think they give you some drug combined with (i think almost pure oxygen) that does something. im a bit vague. will have a quick look to see if i can find a link...




Bingo!:


Pharmaceutical.
The MS Therapy Centre (Oxford) Ltd

37E Milton Park
Abingdon
Oxon
OX14 4RT


Tel: 01235 832023


Hyberbaric oxygen, physiotherapy, reflexology and counselling for people with multiple sclerosis.


Found this too:

https://www.msrc.co.uk/index.cfm?fuseaction=show&pageid=258
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[The Shaggy D.A.]

The site's been down for a bit, but I just got an email saying it's back up again. You may find additional information regarding cannabis and multiple sclerosis here :-

https://www.lca-uk.org/lcaforum/

They're not all pot heads there
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[SoND]

[Clanger]

My friend has MS, and since 2005 it has got her really badly, and she cannot get around now without a wheelchair. But right up to then she was still driving and riding her motorbike, and using the stairs.

She uses cannabis to help alleviate the pains, but also uses it in cooking as it affects the body in a different way...like a warming sensation which left her feeling like she was walking around on marshmallow...she says this is like a huge relief from the usual pain, and only addictive prescription drugs can remotely copy this feeling.

Along with the use of cannabis, she also changed her mattress to the softer memory foam - which helped stop the aching instantly. And thus making laying down a more pleasurable experience.

She said the combination of the mattress and after having a smoke was pure bliss!!

She is not worried by the affects that 'scientists/government' believes because she has lived a full and varied life, and to be able to choose to be pain free from using something which isn't addictive is her choice. She doesn't condone the use of 'harder' drugs, and has no desire to try anything else...despite the claim it is a gateway drug.
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[Mudskipper]

Realised I haven't avctually posted in here for ages.

Thanks very much all who have posted links, anecdotes and suggestions. It's all very helpful, she's read the thread so far herself too.

Not much has changed dramatically, good days (days of energy, some feeling on the left and decent balance) and bad days (really bad vertigo, pain, total numbness on left) and we are both kind of adjusting to the early days.

We had a good weekend with plenty of 'normal' stuff like shopping and cooking etc and chilling and giggling like twats.

Which was nice not to have this thing, like a big neon 'MS' sign hanging over us constantly reminding us every 5 mins.

It's still there, and always will be, but I think it is sinking in more now, no point being miserable all the time, life goes on, just in a slightly different way.

She had an excellent climbing/bouldering session on Thursday (a 'good day' ), she really got on well and enjoyed it immensely.

Said it set her right for a good few days, wellbeing-wise, which goes to show what has been said about exercise. So she'll probably be resuming that weekly so long as she's able.

She's seeing the neurologist this week, hopefully he'll be able to give some idea of where we go next, treatment wise.

Thanks again all
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"You're clumsy, you eat too much and you behave like a 12 year old boy. But you know what? Every once in a while, you find a thumb."