Need Help

Primary progressive MS
1

hi

i was diagnosed last year with primary progressive ms i have tried loads on medication on which none have helped

i went to pain clinic today again and now they have told me there is nothing more they can do for me

i am currently on no medication because none helped of which i have tried

i just dont no what to do any more my scale of pain is either a 8 or a 9 and thats

every day i feel let down by the nhs and was wondering if any one out there can help me or give me any advice

i am 23 years old and need to get my pain under control now

any advice would be much appreicated

thanks

sherrie

2

these are the meds i have tried iv steroids, carbamazepine, gabapentin, pregablin, amitriptyline, duloxtine, baclofen, morphine, morphine patches, tramadol, oxycodone and naloxone, palexia etc these are the ones i can remember

thanks

3

Hi Sherrie, oh darlin’ you really have tried the lot haven’t you… and SO young to have PPMS.

Many hospitals have what are called ‘pain management clinics’. You will need a referal from either your GP or your neuro.

These clinics have doctors who specialise in pain and how to manage it. They work on several levels… drugs yes, but they know more about how combination of drugs might help… or a different dosage. They also work with you to deal with the pain on an emotional and psychological level.

Many years ago I had a good friend who had AIDS and was in terrible pain. GP and consultant had tried everything. Eventually he got referred to a pain management clinic and before long things were MUCH BETTER for him.

Ask your GP or neuro to refer you.

I’m so sorry you are going through this hon. There is nothing on the earth worse than living with chronic pain.

Hope this helps love,

Pat xx

4

Hi

Thank you for your reply, I shall take a visit to my gp on monday and ask to be refered

anything is worth trying I cant give up thank you

5

No hon. Don’t give up. You know what MS is like, because you have so much pain now doesn’t mean it will always be like that… and in meantime pain management clinic might be just what is needed.

Good luck. Fingers crossed for you.

Pat x

6

Hi Sherrie Just wanted to let you know that I am thinking of and am so sorry that you are suffering so much. Pat’s advice appears sound and hopefully someone at the pain clinic will help you. Teresa xx

7

Hi again Sherrie, another thought occured to me. Have you tried LDN?

I’m not on it myself, but given your age and the pain you are in, I think you should consider it. Check it out:

Lots of MSers do use it and if you post about it on Everyday Living you will get good response with advice etc.

Worth a try I think.

Pat x

8

Hi

Yes I have heard of it i shall write another post and see what other people have to say

thank u for all ur help

9

My experience of ldn has been nothing but positive and the site Pat suggests is well worth checking out. Some people claim it helps with pain, but this is far from guaranteed.