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Advice and opinions please re medication

I have has MS for 11 years and two years ago diagnosed with secondary progressive after a massive flair up. Last week I had an appointment with a neurologist I had never seen before, the reason being I am having symptoms every day and just feel I am constantly in a flair up. The consultant said I am not having small flair ups it is that I have damage from my previous flair ups and that is causing symptoms everyday and I will be like this all the time basically. He has said my medications are doing me no good as they are preventative and can not treat damage that has already been caused. I have therefore been advised to slowly reduce the meds. I feel confused and would like to hear from anyone with similar dealings or advice. Many thanks and wishing everyone all the very best.

I too am sp and sadly your consultant is right there is no point in taking preventative medication. You didn’t mention what your daily symptoms are but there are lots of different medications that can help with various symptoms. If he didn’t advise of this maybe you could see your GP or MS nurse( if you have one ) to talk about the possibility of something that might help you I do understand that it can be really hard to think that this is how you will be now but I really think if you could get help with some of your symptoms it would be a huge help…I take various things that really are, mostly, a big help, sometimes it can be trial and error and sometimes you can try something that doesn’t work but when you do hit on something that works its fantastic. Good luck, Best wishes, Nina

Sorry! Just realised I’ve answered on a different thread to the others I too take LDN…it took me years to decide to take it…and now I too wish I’d tried it years ago. Nina

Hi

Does anyone feel alone and isolated with their MS. I do today. I have a family that does not understand or know anything about MS. My memory has go so bad I have to set myself a challenge to remember what I had for my tea yesterday.

Today I feel lost.

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Hi Littleoldme,

I was only diagnosed this year so sorry if I can’t offer any helpful advice but I am sure someone here will. I just wanted to say I am sorry that you are having such a rough time and feeling so alone.

Have you got an MS Nurse? If you have I would telephone and let them know how you are feeling. I would imagine that getting this kind of news is like being diagnosed all over again even though you have had MS for 11 years.

Is there a psychologist attached to the MS Neurology team who treat you? I have just been referred to one so haven’t tried it yet but am willing to try anything that might help me deal with this.

Snowqueen x

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Hi nina

what dosage of Ldn are you on and how do you feel it helps? Also can you take other antidepressants with it?

I take the tablet form now but the general liquid dose is 4.5 ml …you build up to that in tiny incremental doses.

I believe it helps different people differently but for me it solved my bowel and bladder problem, it also helps with skin problems, sore patches, manic itching , crawling skin etc and after taking it for some considerable time I now believe it’s improved my walking a little. I think I was taking it for a couple of months before I began to notice differences.

I had to stop taking it recently as it blocks morphine…I very quickly real used how good it it. I chose to stop the morphine and go back to LDN.

Pat has given details on how to get it on another post… It didn’t suit Pat (snow leopard) but I am very happy with it.

Nina

Hi Littleoldme & welcome to the board.

I think it’s very normal to feel isolated with MS, which is why this board is so helpful.

Have you tried to tell your family about MS? There are some great factsheets on this site that you could just leave lying around the house… hopefully someone might read them!

Do you live alone or with family?

Also maybe you could find out where your local MS Society meet. There are groups all over the country. Go to the top of this page and click on ‘Near Me’ & see if there’s a group you could go to. I think it would be great if you could make friends with some local people with MS.

Also hopefully this board will help you feel less isolated. This is a brilliant group… very supportive and friendly.

See you on here again I hope,

Pat xx

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Hi Littleoldme and welcome to the forum, you’ll find lots of advice here from a lovely friendly bunch.

Hope to see you again.

Pam. X

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l swear by LDN - it will help your memory - and give you a more positive outlook. Like Nina - l wished l had known about it many years ago. You need to give it at least 6 month trial. Helps you cope with MS symptoms.

Also like Nina - l had to come off it whilst in hospital with knee-replacement op - as they were giving me codeine and morphine - l soon got back onto it as soon as l was home.

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Hi, littleoldme,

welcome to the forum, hope that you will find that it helps you, it was a godsend to me,

Take care,

Nina x

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Hi Little Old Me. Like the others have said it is very easy to feel alone with ms. Because it’s an “invisible” illness people often forget that you’re not as well as they are and though they say they understand symptoms like fatigue (which let’s face it, is very debilitating) they have no idea. We all know what it’s like feeling tired after a long day, but what we try to cope with daily is much worse.

The others have given you really good advice and as Pat, Pam and Nina mentioned, the forum is a great place to come to because we genuinely do understand what that alone-ness feels like. Any time you want to just click on “New thread” and let us know what you want to talk about. It sometimes happens that people don’t notice your post on the end of a thread. There’s nothing wrong with it, please don’t think I’m criticising but you’re more likely to get responses. I was nervous the first time I started a new thread but everyone on here have been lovely and supportive. They’re a friendly bunch who’ve really helped me cope, I’m sure you’ll feel the same.

Take care

Cath x

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Hi littleoldme please don’t feel sad alone. All of us on this forum are in the same boat and sympathise like no one else can. Hopefully you feel better by now but any time you feel down send me a message and I will reply and try my best to help :slight_smile: I was diagnose three years ago and tried four different drugs as well as steroids. Then a relative told me about something that had really helped her cousin with MS. The stuff that helped is not a cure but was very highly recommended. So I very sceptically tried the stuff from America just because it came with a money back guarantee. Very surprisingly after taking it for one month, my husband couldn’t believe how much more energy I had! I have been very pleasantly surprised how my heavy dead arm and leg now feels normal, I don’t get as many headaches and brain fog has improved so much friends and family have actually commented on the improvement. It’s totally natural and can be taken alongside your medication, the great thing is I am now medication free :slight_smile: You’re maybe not interested but if you’d like to know more send me a pm and I’ll send you the info. Also any time you feel alone or just want to chat send me a message, I’m happy to help.

Hi Thankful,

Can you tell us what it is that has helped you so much?

Nina.

Hi Thanksful

I have only just seen your message. I am in the middle of anther flair up which is lasting now for three weeks. I am waiting to see the Neurologist but going to the Walton this time. I will send a pm. Liz