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The bureaucracy is a joke

Where to start? Cant have DMT’s till 2 documented relapses. I was able to google the symptoms an deduce what I had before my 3rd major relapse (which happened to be optic neuritis) - thank God it was finally that so these idiots figured it out and finally admitted i was right for about a year. Not before it severally damaged my right leg.

Then the pain. The number of times they tried to get away with giving me amitriptyline is comical. They can stick that amitriptyline up their arse. Now I have graduated to Gabapentin which does nothing more than help the burning feet. Really? There is nothing else i can try? Nothing??

I’ve had a relapse since tecfidera however they are unwilling to try anything else. Hard to get a lot out to the neurologist during my allotted 4 minutes every 6 months.

The muscle seizures after showers. God forbid the local doctors give you a muscle relaxant for that. Oh but they dont want you to get addicted. But its ok for me to be addicted to pain everyday and dread showers like i used to dread the dentist.

And the steroids. The hoops some doctors make you jump through are a complete joke to another just giving you a script.

So I have decided to take matters into my on hands, since the health care system has completely let me down. I am searching websites and EU doctors to find out what else can be done. As long as we are apart of EU we can use their doctors right? I am making some headway and wondering if there were any like minded people sick and tierd of the ridiculous bureaucracy that is willing to sit there and watch me deteriorate in cruel and painful way. I know I am not the only one out here after reading these boards

hiya

before u stick that amytrip somewhere that it shouldnt be please throw it my direction as i find it helpful…

i totally understand your frustration/anger i truly do. but the bottom line is there is no cure as yet. there are some effective treatments in the hope to slow ms down in its tracks but as an ''oldie on these boards i have seen many of the whacky ‘cures’-all false as time has shown.

i have heard this man speak several times since diagnosis-most recently in sept 2018. maybe try and read some of the things that he has been involved in? (Professor Siddharthan Chandran)

outwith the uk am sure theres many who want to ‘help’ you cos they want your money for something that they know there is no cure yet…

its possible to take charge of your own healthcare here-that is what is encouraged-but its better to do that with the support available to you which i am very aware varies within healthboards never mind counties!

here is a good place to vent and asks questions then decide for yourself what is the best option to try.

*breathe…

diagnosis is hard for everyone to get their head round-you and those who love/care for you-you will find your way.

take care, ellie

Hello Tony

I’m with Ellie, I find Amitriptyline helps with burning type pains, so long as you take it at the right time of day (early evening).

But no drug works for everyone. It depends on what type of pain you have and when you get it. You could ask for Pregabalin, many people find that works on their pain. There are plenty of other drugs too. If you have an MS nurse, ask him/her for advice. Or you could look at https://www.mstrust.org.uk/a-z/pain

In terms of stiffness and spasms, most doctors will prescribe Baclofen or another muscle relaxant, eg Dantrium. Again see https://www.mstrust.org.uk/a-z/spasticity-and-spasms for drugs and alternatives to help with pain.

I honestly can’t see that right now is a good time to be trying to get treatment from elsewhere in the EU. Without mentioning the dreaded B word that has an X in it (and not the misspelling that would get me moderated), you are unlikely at this point to get help from Europe.

It may be that you need to change doctors. If you’re seeing a rubbish neurologist, then try to switch to another hospital or another doctor within the Trust. If your problem is with your GP, again, try to switch to a different GP within the practice, or swap to a completely different practice. You do of course have the option to get some help from PALS (Patient Advice and Liaison Service). Look at your hospitals website for details.

Best of luck.

Sue