Hi everybody i have had my MRI done and told i have areas he didnt like on my spine and in different areas of my brain. I was then sent for a LP and other tests. Just got a letter that i have an app with the neuro Monday week. My right hand side was numb down my leg and around my stomach and back on the right but has all returned to normal. But since i last seen the neuro about 4 weeks ago my left leg went numb although didnt affect my walking and is starting to leave and get better now. Just wondering what will happen at this app. If he gives me a dx what happens then? Will i b given meds are just left to see how things go? Also i returned to work last week i just did two days as i am doing a phased return i was wrecked! After two days i could not believe it i use to work full time hours with lots of overtime!! I also have to see OH before i am aloud to do nightshifts or over time has anyone else been threw this? Any info would be great. Thanks, Charlene
Hi Charlene,
If, indeed, you are diagnosed at your appointment, not a lot else will probably happen there and then.
They know it’s a huge piece of news to digest, so my experience was my neuro did not want to burden me with talk about what we were going to do about it - apart from anything else, it’s questionable whether you would be able to pay attention, or make any rational decisions - the conversation should NOT be moved on to treatment decisions, whilst you are still in shock.
What happened to me was I was given a load of leaflets, and told a second appointment would be made to discuss next steps.
I admit I was diagnosed on BUPA, and only then referred to the NHS, but I don’t think this affects the principle that they wouldn’t expect you to make any tough decisions or take in a lot of new info, immediately after being diagnosed. It’s likely that the scope of the consultation would be chiefly the diagnosis, and that’s that. You wouldn’t be banned from asking questions, of course, but you wouldn’t be put on-the-spot and asked to decide anything important.
Even though I’d been expecting the diagnosis, I didn’t go armed with a load of questions. I do remember asking: “We don’t know what causes this, do we?”, and he replied: “It’s nothing you did!” I think that was about it - I was in and out in five minutes.
I only discussed treatment MUCH later - in the event, it was nearly a year later, because the person who was supposed to assess my eligibility/suitability was herself seriously ill, and off work months and months. Nobody seemed to cover her caseload in her absence, so I was left in the queue.
You will gather from that not everyone is automatically suitable/eligible for treatment. The rule of thumb is you must have had two clinically significant relapses in two years. “Clinically significant” is not defined, but some consultants treat it as synonymous with “disabling”, meaning that if you had a minor sensory relapse - say just tingling - they might not count that as “clinically significant”.
If you haven’t had two clinically significant relapses within two years, or there’s some question whether you have, they might decide to watch and wait.
You also need to be still able to walk a certain distance, though the exact distance is different for the interferons than copaxone (I think the copaxone distance is shorter, but I’m not sure). I think the harsh logic behind this is it’s not considered “cost effective” to give treatment to try to preserve walking ability, if a person has already lost that ability - i.e. you can’t stop what’s already happened.
I assume, from what you’re saying about work etc, that you’re not already in a wheelchair, and even if you’re finding walking tougher, it’s probably not so severely compromised that you wouldn’t qualify for treatment.
They also look at things like whether you have a history of depression, as some treatments are not recommended in that event, and that sort of thing.
I hope your appointment goes OK. Try to remember that diagnosis does NOT make you a different person to the one you were the day before, or mean you’re any sicker. You will still be you, and whatever disease you’ve got has already been there quite some time, so the only thing that would change would be your knowledge.
Try not to be too upset, too, if he doesn’t diagnose. Do mention that you have had a further episode since last seeing him, even though this is getting better now. This could affect both diagnosis and treatment (the two in two years rule).
Tina
x
Thanks Tina I think it will be bad news from all the test results i know about and he said it was highly likely i had MS but would not comfirm until i had the LP results so in a way i have prepared myself for this but there is still a little bit of me hopeing its all been a big mistake and it will all go away lol. i have had what i consider mild episodes over a year and a half ago i had what they thought was carpel tunnel but turned out this was not the case. Then the two episodes with my legs none of which affected my walking so not too bad considering. Still feel like me except for the depression i have had but started meds for this so hopefully they will work. Thanks again for all the info Tina has given me lots to think about and some questions to ask if it is bad news. Hope u r well x Charlene