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Drug trial update

Nov 19, 2012 - 1 comments

19 November 2012

I have decided to stop writing about every single hospital visit that I make as they are usually much the same and do not make very interesting reading.  However I will just add in occasional updates if anything occurs that I think may be of interest. The main thing that has happened is that the drug trial has been extended for a further three years until 2015 which I hope is good news.   I am guessing that as long as there are no adverse side effects the pharmaceutical company are going to look after us for a long time as they will want to see if there are any long term side effects for their guinea pigs! The other significant change is that they has withdrawn the strongest strength 40 from the trial so we are all now on strength 20 or 10 but do not know which. One day we may find out but none of us from this stage of the trial are on the placebo. I have not had a relapse since last year so fingers crossed this continues. I still get very regular fatigue which is often related to being very active and overdoing things.. but can also come unannounced for no reason at all.  I just know when I am really tired I have to rest and that fighting it does not help.

I am getting on with my life, not letting MS rule it and have not found the need to come on the forum regularly mainly because my time is taken up with busy family times, but also a conscious decision to put MS on the back burner when possible.  I have joined an MS Therapy Centre in the last 6 months and see a physio from time to time as well as a reflexologist/aromatherapy masseur and attend a weekly physio exercise class. I am also enjoying going to the theatre more frequently to see plays and opera and I have taken up singing lessons again. So life goes on, my eldest son 22, achieved a distinction in his Masters Degree and is now back home and my two younger kids are applying for university and music school....and they'll keep me very busy as my hubbie is often away on business. That is all for now and I cannot promise when the next update will be, but even if I may not write much regularly I still pop in from time to time. xxxxxxx

Visit E10 - BRAMS Neurology check up  60 weeks

May 29, 2012 - 0 comments

Wednesday 16 May 2012

I went for my three monthly check up and saw Dr W (the Registrar). I said that I had felt Ok for the last 3 months apart from the usual fatigue and muscle ache. I do wonder what is "normal" for MS and what other people experience on a daily basis as some people do not seem to have many ongoing symptoms and yet are in a more advanced stage, while I am on constant medications and always seem to experience constant reminders in the shape of pain and stiffness and occasional tingling which comes and goes. I don't think there is a "normal" as I think it seems to manifest itself in different ways and we all have our own personal pain thresholds.

I was advised that there is going to be a change to the "Ponesimod" drug trial in the next few months and they are taking out the 40 strength (there are three strengths of 10, 20 and 40 and none of us know which we are on). Apparently there have been the most side effects in people who have been on the 40 strength (so don't think that can be me as I have had few side effects that I am aware of). So in July I have to go back to resign contracts and enter a new phase of the drug trial where participants will either be on 10 or 20 strength but it will still be double blinded so no--one apart from pharmaceutical company knows what strength we are on. I will have some questions such as will this go on for longer (as the trial I was on was due to finish in March 2013) and when will we find out what strength we have been on. I am sure I will find out on my next visit.

Anyhow I then saw D my MS Nurse and she did an ECG, took bloods, checked blood pressure, did pulse, temperature, and urine. She had done a half marathon with one of the other MS nurses for the MS Centre in April which was an amazing effort.

Visit Time          1 Hour 30 mins
Travel Time        1 Hour
Travel Distance 40 miles

Emergency Visit

May 29, 2012 - 0 comments

Friday 4th May 2012

I had a complete disaster last night when I went to refill my weekly tablet pots and realised that I had accidentally thrown away my full pot of drug medication the previosu week instead of the empty pot (it is very light and was full so did not rattle). So I had no medication to take and had to ring the emergency number and luckly got through to the drug trial secretary who arranged for me to go straight into hospital.  I was very lucky as it was a Friday and if it had been the following day I would not have been able to get my medication until the following Tuesday as we had a bank holiday on the Monday. Anyhow I felt very foolish but was relieved that it was sorted out without a break in the medication that I have now been on for over 18 months. Brain fog or what!!!!!

Hospital Time     45 minutes
Travel time         1 Hour
Travel Distance 40 miles

Visit E9 - Lung Function Test and Echocardiogram of Heart

Mar 08, 2012 - 0 comments

Thursday 8 March 2012

I went to Southmead Hospital today (accidentlaly directing Mum the wrong way to Frenchay Hospital so we had to do a detour). All went well and first was weighed - (DID NOT ASK HOW HEAVY!!!) and measured and then did the basic lung funciton test of three separate blowing tests. I then went to a different area and had an echo done of my heart and blood pressure taken. Everything was fine today and not too long waiting so this was good. This was the last test for the next three months

Travel Distance      40 miles
Travel Time            1 Hour
Appointment Time  1 Hour