Anonymous 21/05/17
Last reply 1 year ago
Any advice?

Hi, I am new to this site. I am 26 and have had relapsing remitting MS since I was 15. I am taking Fingolimod but have been told by my hospital to stop taking it for the moment as my liver count has been high. So at the moment I am not taking any medication, my legs have been quite weak the last few weeks (I am unsure whether or not this ha anything to do with not being on any medication). I try and keep active and go to the gym, has anyone had any experience with alternative therapies that actually helped?

Thanks

Morris

Add categories

Browse categories and add by clicking on them

You can remove current categories below by clicking the ‘x’.


jolou
1 year ago

Hi Morris

I’m new to this site too. I was diagnosed in 2011 and am nearly twice your age :-/ It’s a tough situation to deal with but take heart that progress is being made to help sufferers (most recently that Statins may help) and you have youth on your side which means your body is better able to regenerate and repair.

As you are now in a break from disease modifying drugs you may want to consider looking into Low Dose Naltrexone therapy. This will have zero affect to your liver and has been shown to have an immune regulating effect which may stop your body attacking itself and causing the inflammation. Many testimonies report that it improved their energy, walking ability and cognition. I have been taking it for 7 weeks and have found improvements in all three departments!

Ask your doctor about it and you may find he will prescribe for you but this is unfortunately unlikely as it is not a standard recognised treatment. However, you can get it mail order for around £20 a month.
This is the best website to find out all about the use of Naltrexone for MS: http://www.ldnresearchtrust.org/are-you-a-patient
and this is the website I went to http://www.prescribe4me.co.uk/Home/Default.aspx that will organise getting a prescription. ( note another organisation seems to have taken over prescribe4me as I then got emails from ‘Clinic 158’).

Basically once I’d requested a consultation on the Prescribe 4 me website, I got an email asking me to email any documents that state what my condition is, then wait for a Doctor to get in touch as they have to check you are a valid patient. They then notify the dispensing chemist (Dixon Chemist Glasgow), you have to register with the chemist and then for £20 a month they post the drugs to you. The whole thing to register, speak to a doc and a months supply cost me £100.

I strongly advise giving it a try, but if you are taking one of the DMD’s they apparently cancel one another out and the LDN will not benefit the patient.

Apart from that keep up your exercise and stay strong!
Blessings

Jo


mmhhpp
1 year ago

Anonymus , i also had to stop fingolimod few years ago for some liver parameters going high and after 3 months I started relapsing. It is well documented in the scientific literature the re-bound effect. I would contact ms nurse/doctors as soon as you feel bad.

In my case i was using at the time asthma inhalers wich i believe they were responsible.

Take carexx


Anonymous
1 year ago

Hi @anonymous I’ve tried several alternative medicines from acupuncture to Chinese medicine and kiniesiology. They all have their benefits and some worked better than others. The one thing I’ve stuck with for 12 years is what I eat (or actually what I don’t eat) and yoga. You’re unlikely to be informed about Diet by the medical profession, but there’s plenty of information online. Dr Wahl, Dr Embryo (I followed this for 11 years), ketogenic diets (I’m on this now), paleo, SWANK, Ms diet for women… you’ll know which one works for you although it will be trial and error. I also do yoga everyday. My main symptom was fatigue and cognitive issues, I’m now starting to feel ‘normal’. Stay strong.

Post Comment

You must be logged in to reply to this topic.