3 posts Page 1 of 1
G'Day,

I am a 41 year old Australian Cypriot whom has been living in the UK for the last 12 years.

As someone whom has been recently diagnosed (July 2014), my experience with the two neurologists that I have seen (one at Moorfields Eye Hospital treating my second episode of optic neuritis (ON) and the diagnosing neurologist) seem to have many fluctuating positions regarding DMD's. In all honesty, they were both more concerned about which London hospital I was going to be referred to: either The Royal London Hospital or Queen's Hospital. I did not know the existence of the harsh competition between the two institutions until diagnosis. Bless them both, they made me feel like an expensive football/soccer player who was up for grabs during a transfer period.

Following my diagnosis, I was referred to The Royal London Hospital, which I will be attending tomorrow. The diagnosing (referring) Neurologist recommended I commence with the more potent DMD's, namely either Tysabri or Gilenya. When I went to Moorfields for my follow up regarding optic neuritis (ON), the neuro-ophthalmologist was too busy in expressing his array of doom and gloom scenario's once he established I was not going to Queen's Hospital.

Despite me conveying to both at them on my respective visits that I am a strict follower and believer of the OMS programme and that I will be opting for a first line DMD that result with lower side effects (namely copaxone or tecfidera - which will be available at the end of November in England), I unfortunately got nothing much but dismissal and weird looks.

I was vitamin D deficient during the time of my second episode of ON (36 nmol/l), where I had boosters. Ever since that and my adherence to the OMS programme in general (even though I know it is early days, I think exercise and mediation have been extremely beneficial), most of my symptoms have currently resolved (numbness and tingling of hands, burning sensations on right leg, pulsing and twitching in lower body). This is in addition to a particularly good recovery from ON.

My approach to DMD's is to make use of one with lesser side effects as a complimentary measure to the OMS programme, as we all know that it could take 3-5 years for its benefits to kick in.

Thus I was wondering if any of you whom have already been through this experience could kindly provide any advice. That would be much appreciated.

Respect to all...
Hi
The only thing I can comment on is whether to take a drug and which one to take is your choice and don't be bullied into taking a drug you do not want to.
Copaxone appears to be well tolerated and you don't hear of rebound issues when the drug is reduced/stopped.
Glad you are sorting your vit d level.
Don't lose faith or feel negative about what you are doing by following OMS you do not need to explain your self to the Neuro or have their support and if you encounter negativity move the conversation on.
Good luck.
Cheers veg. I will definitely make an informed decision regarding my choice.

Thanks for your reply and kind wishes.

All the best..
3 posts Page 1 of 1

Who is online

Users browsing this forum: No registered users and 1 guest