I thought people might be interested in details of this trail
About MS-STAT2
WWW.UCL.AC.UK
For people like myself who are SPMS this seemed very interesting and I am currently on this trail. Let's wait and see what happens!
Being on any trail does have the benefit of having closer contact with neurologists and of being monitored more closely that would otherwise be the case. This is I feel very beneficial to me and even if I am simply on the placebo, or that the outcome of the trail is unsuccessful, the net benefits are clear.
Nick
Hi all
So suddenly last month I started having strange neurological symptoms, starting with a sensitive patch on my left arm then numbness and pins and needles in my right arm and hand. I had such exhaustion that I could barely function. I also had lower back pain and electric shock sensations down my spine. I had other strange symptoms that came and went over three weeks like a pressure on my right ribcage and tinnitus. I was referred for MRI. Anyway, after 3 weeks I started to feel much better, I should add I had pins and needles and exhaustion for a month last October.
I just had a phone call from the neurologist who said he'd like to examine me but said I have optic neuritis on my MRI but can't see and other lesions, so it's not ms. Although he mentioned Evoked potential testing. I'm just feeling a bit confused now as I know optic neuritis is often a sign of ms, and not even a symptom I had noticed. Would it be impossible for me to have it on the basis of seeing nothing else? Googling it, it seems a coincidence that it is very linked to ms. The Dr sounded like he was only looking at the scans on the phone and was making his mind up about it. Has anyone else experienced this?
Of course as soon as I got off the phone I had loads of questions!
I recently went to see my MS consultant in London to discuss treatments that were available to me... or so I thought.... when I got to my appointment, which had cost me (and my husband) £63.00 for the train to London to travel in peak time, I was told that my MRI results had not been sent to them and therefore they were not able to help me. I felt so frustrated that this was a waste of NHS time as well as mine, as my husband and I had taken the day off work to attend but this was also a waste of money. The only useful information I got was that I am able to request of copy of my scans to keep for myself.
This was more a piece of information for others, to request a copy of your scans from your local hospital to be able to take with you to appointments.
Moaning over!! I hope that this will save someone else from having the same frustrations.
Founded in 2004, MS People UK is a community website and discussion forum by and for people with Multiple Sclerosis as well as for friends, families, supporters and those interested in this disabling condition.
If you’re newly diagnosed or want to ask about possible first symptoms, or if you’ve had Relapse Remit, Secondary or Primary Progressive MS for some time, a welcoming group of fellow MS sufferers is here to chat with you about MS symptoms, diagnosis and treatments.
The atmosphere is friendly whilst being compassionate, supportive and caring. Members also post about a variety of subjects not related to MS, as well as share jokes, talk about their hobbies, have fun, and more.
The MS People Forum is not responsible for advice or information supplied by members. We suggest you seek medical advice before trying anything.
