said86 17/11/17
Last reply 8 months ago
It's hopeless! Any info could be helpful

Hey,

My brother 33 year old has struggled with MS for 12 years and he is in bad shape. We moved to Sweden for two years ago and he hasn’t had any medicine since because doctors here are so painfully overprotective about writing medicine, He is getting worse every day and we are wondering if there is any type of medicine that give him some energy to go through the day, and be able to do simpler things like lifting his mobile phone to his ear.

All answers are appreciated! Thank you all in advance!

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stumbler
8 months ago

@said86 , it’s good of you to join us on behalf of your brother.

Fatigue is one of the most frustrating symptoms of MS. And, unfortunately, there’s not much that’s available to counteract it. The drugs Amantadine or Modafinil may provide some relief, but they don’t work for everyone and they are prescription meds.

Otherwise, gentle exercise is needed to try and build up/maintain strength and avoid muscle wastage.


hmcampos
8 months ago

I hope that what you mean is that is is without meds for fatigue and not for MS itself, correct?

On the long-term maybe vitamin D supplements can be of help, but on the short term, apart from exercise like @stumbler said, I do not know of any medicine hat would help. Sorry.

Hope it all goes well for your brother @said86.

H


nutshell88
8 months ago

Hi

I had MS for 13 yrs
I havent had any meds my whole life altho all drs were pushing me to
I felt its like adding toxic tobthe woond and today i applied for a second job

Im not expert about meds since ive never tried any
Just advise him to consume healthy vitamins and food cut alcohol and smoking

Be safe
Reem


mmhhpp
8 months ago

@said86

Do not feel bad about not having had any meds. I have had ms 7 years and i have been on fingolimod from the start of my ms and I am also rapidly going down….even holding on iphone is tricky and I am wheelchair bound.

I am seeing another specialist at the end of the month.

I am spms now

I wish i could be of more help…..

Xxx


salvador
8 months ago

When I think of Sweden I think of long dark winters, which would make me utterly exhausted, as the thing that fatigues me most is lack of sunlight.

I’m going to Tenerife next week for my regular dose of winter sun, which makes a huge difference to my general wellbeing.

Do you have the opportunity to do the same for your brother?


cameron
8 months ago

One of my family lives in Norway and although she loves the life there says that a downside is the paternalism of the medics. I wonder if it’s the same in Sweden – certainly in Norway, she says you ‘take what you’re given’ and there is no concept of patient choice or asking for second opinions. She had to persist for 18 months before her doc would make a referral. It was for her son and she was so desperate she even considered getting him back to the UK. It seems to be not any lack of money but just the way it’s done. Could this be part of your brother’s problem?


annasweaze
8 months ago

Research OMS Overcoming MS diet. I have been on it for the last six years with no relapse or progression. I don’t take meds. OMS works really well, just takes a bit of adjusting to but he should feel gradual improvement. Hope this helps


potter
8 months ago

You might do some research on Low Dose Naltvexone or LDN. It is a low dose opiod so you need to take that into consideration. A doctor started using it on his daughter that was having a difficult time with her MS. It doesn’t slow down the progress of the disease but it helps with the symptoms. It is a very inexpensive medicine, take a look at the research and results. Do they have any medical advocates that your bother could get or a medical board you could make a plea for help? Potter


bok2bjan
8 months ago

Hey @said86 – as stumbler said – modafinal is often prescribed – I tried it years ago, but it woke me up toward evening – not what I wanted! I’m prescribed methylphenidate (Ritalin) – but don’t take it often. It does help though, when I really need it, and my neuro is very happy to prescribe it. It’s not covered by my insurance though. I figure it’s worth a try to ask his Dr. It’s great you’re helping your brother.

@potter – I considered LDN many years ago – worth a second look. Lack of energy is such a difficult issue! I think I’d be better if I could just sleep! I feel like I’m a zombie, lol.

I hope your brother finds something that will help. Blessings to you both, Jan

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