anyone out there with ms?

[hatter]

having a bit of a bad time, have posted on an ms site and no responses. Anyone on mumsnet for me to talk to?

Although I don't have much knowledge of ms, I have a good friend who was diagnosed earlier this year, and I wanted to acknowledge your post. How are you at the mo?

thanks Freida, Sorry to hear about your friend. It would seem I'm having a relapse - the first serious one for about 5 years. And for the first time it seems to be affecting my walking. So, not feeling too good to be honest. But, on the other hand, it could be a whole lot worse.

Sorry to hear you're having a bad time hatter Do you use the MS Resource Centre website? it's here . Dp's brother has ms (diag when he was in his late teens and he's now in his mid 40s), but I don't really have much knowledge of this myself. I really hope you are feeling better soon.

Sorry to hear that you're not well Hatter.I haven't any experience of ms,but thought I'd give you a bump.

you need issymum, her dh has ms, diagnosed a good ummmmmm 15-20 years ago. issymum, where are you?

sorry to hear about this hatter. is there anything in particular that may have triggered the relapse? are you particularly stressed/busy at the moment? Can you take some time to slow down and rest?

Sweetie,
sorry you're having a bad time. Please let me know if there's anything I can do.

Issymum..your advice I think is spot on.

I am so very sorry to hear that you are having a bad time of it hatter...Is there anything specific that you would like to know that could help. For example are you having a lot of spasms and if so what anti-spasmodic are you taking, if any?

I so much want to write something positive, but it is hard and I know that when you are curled up crying and in pain it seems as if the world should end and this will bring an end to your discomfort. I can only tell you that it will pass. Try and focus on something nice...it does work but it takes mental energy that you often feel too tired or drained to use.

I often look at photographs of 'happy times' end up in tears but it is a release and I think that everyone has a different coping mechanism.

Without knowing what type of MS and everything I am finding it hard to give you definitive advice, all I can say is that trying, and I know it is hard, to feel positive in yourself and keep occupied and also to remember that it will pass may help you. Have you been taught any coping mechanisms?

I really do wish you all my love and best of luck in the days to come...but Mnet is here for you so moan away and we will understand.

Love from Bunglie.

PS if you want to email me you can ask Janh (by sending her a CAT for my email address and maybe I can be more constructive, as I feel that this posting is not really that helpful....sorry

Issymum, I understand this and have used this 'service' it does work. You do however need your doctors consent if it is the people I am thinking of.

Do you take baclofen? as it is not as effective but is does help.

Oh how I wish I could be more constructive as I know how you are feeling....just keep telling yourself that it will get better. Honestly.

I understand fully. When I lived in London I was part of the cannabis trial but having moved I lost that so I then was put in touch, by the doctor with another group. They asked to have my Dr's consent and there was a bit of paper work. I will see if I can find a web link to them.
I do not agree with smoking cannabis as you do not get much of the right chemical that way, but you can get cannabis chocolate and cookies, and they do work.
I will try and find that link....
I hope your dh is OK at the moment Issymum, Hatter It is horrible but remember that people here do care about you.

It has suddenly dawned on me that some people may well be justifiably horrified at the suggestion of someone taking cannabis.

Firstly all I can tell you is that when you are curled up in a spasm crying because it is so painful and not able to move you will take anything. What can the medical profession offer....well there is a common drug called baclofen but it is not all that good, however I am prescribed 35 ampoules a week of diamorphine hydrochloride. That is 5 ampoules a day of pure heroin.

Now you may think I am wrong but to me it is stupid that I can be prescribed and self administer a class A drug, heroin and yet it is illegal for me to have a class C drug, Cannabis.

I do not agree with drugs and I think that we should always protect our children, but I do say that there is a place for cannabis in medicine, I am not so sure that I should be prescribed heroin, as to me it is a bit like taking a sledge hammer to crush a walnut. But the doctors hands are tied and at the moment it is illegal....however there is not a case I believe of an MS sufferer being prosecuted for using cannabis....but I stand to be corrected.

I personally think that the law is an ass in this case but I just wanted to explain why I was advocating that hatter should try cannabis.

Hi everyone,

thanks soooooo much for your messages. I think Bunglie and Issymum will understand when I say that one of the things that's tough is knowing how to handle this emotionally and knowing how to be with my dh. DH is fab, don't get me wrong, but I kind of envisage that he's going to have to deal with quite a lot of off-loading over the coming years and if you guys can effectively help share the burden, as it were, that can only be a good thing.

Issymum - your dh sounds inspirational, thank you. I don't have a whole load - physically - to deal with at the moment. I can see that issymum and her dh and Bunglie have far more to cope with than me. But i's still a bit scarey - the uncertainty of it all. If my doctor said tomorrow - ok, your leg hurts, there's nothing we can do about it, it will be like it is now for the rest of your life, then I would come away with a smile on my face, thinking, yep, if this is it I can cope. And whilst I know it's stupid to worry about the future it's really hard not to.

I am a bit cross today with my gp surgery. I saw a locum last week, and without even prodding me or asking me anything about symptoms she said she'd get me an "emergency" appointment with the neuro. I phoned the neuro's secretary today - and they hadn't even received the referral. How can they call it "emergency" and not have even have got round to sending a bloody fax 6 days later? .

I'm afraid I'm at work at the moment, so I can't really re-read all your notes and respond but it really means a lot that you've posted - and thanks pph for alerting issymum.

Hatter, I just want to say that I have 'off-loaded' onto mumsnetters too many times, but it has saved my sanity, seriously.

Anything that I can do to help you please feel free to offload on me.

I do understand what you mean about being told that there is nothing they can do, but there is and please do not give up hope. I do know that it is very hard sometimes as the sheer energy of trying to keep it all together can take a lot of energy that you do not have.

Take lots of rests at the moment and indulge yourself. It is not selfish for you to take time out for yourself and it will help both you and dh in the long run IMHO.

Just do what you can when you can, and remember that you are not alone and a lot of people do care about you.

isn't issymum stupendously fabulous? as is her dh...