Hi sorry but this is a bit of a moan, maybe a big one. Since 2008 I have been in and out of hospital, life threatening illness twice. Then in 2009 I woke up with double vision, went to Dr. who asked if I would go back next day as he didn’t know what was wrong and would look into it. He rang later after surgery and told me to get straight onto hospital, he had booked me a bed. Thought I’d had a stroke, a very nice Dr. came and looked after me for a few days, she dealt with stroke patients. Eventually Neuro turned up very cold just asked if I’d been told I had ms and if I needed more treatment it would be another hospital. He did organise a steroid drip and mri scan which I know nothing about and neither does my Dr. is this normal? not to hear about your scan or see it? I have only seen him 3 times and told me nothing apart from I won’t get meds until 2nd ralapse and I may have rsd too I’m pretty sure I have had another but symptoms were different. He’s just moved my next appointment on by 6 months as I don’t think I count, MS nurse and Physio are the same too. I cannot make myself any food or a warm drink, shower on my own or do the housework. My friends have gone and I hardly leave the house as I am very unsteady on my feet. I am very fed up and so is my hubby as I’m not always easy to live with. I thought R R MS was a slow moving illness but it’s racing with me.
Phew, you’ve been through the mill haven’t you?! With MS, there is no set path with anything, everybody’s different, but what the majority of people find is that stress does not help at all - even without all the other problems you’ve had, what you have to go through practically, emotionally, and all the rest, even to get a diagnosis can be fairly overwhelming, so that, coupled with everything else has made the last wee while a hellish time for you.
Don’t know what it is with consultants (for any speciality), there seems to be two types of them - cold uncaring lumps, or really nice ones who see you as a person, and it’s just pot luck which one you end up with.
People are strange - I was widowed last year and lost a few friends then, I think they just didn’t know how to deal with how they felt about me, and I think that I’m better off without them - if they’re that flaky and selfish, I don’t want to know them, and I hope that they never ever have to go through what I did, because they obviously won’t cope.
There are things you can do that might help - have a read of George Jelinek’s book on diet, have a look at hyperbaric oxygen - I go once a week and find that it can help with relapses, but even the social interaction with other people who know what I’m going through with this stupid disease is valuable, maybe some counselling might help you and your husband to deal with things, if you have a look on this site, I think there are links available. Even the act of doing something to help yourself will make you feel better.
I hope you feel better soon,
Luisa x
Sorry you are having such a horrid time. Small wonder you are feeling low. All can suggest is, keep a good note of your symptoms. If something definitely odd and new starts happening and you think it might be a new relapse, then alert them - they will almost certainly fit you in to assess you. Routine appointments are pretty useless generally anyway - the important ones are the ones that happen when there’s something new to report. Having said all that, of course your GP should have received the results of scans and so on - worth chasing this up?
I hope you get some answers.
Alison
x
I’m sorry to read about the difficulties you’ve been experiencing at the moment. Here’s my, short recent, medical history!
Looking back over the last 3 and a half years there were 2 Big Events (i.e. hospitalisation) which have affected me. The time I had surgery, which I thankfully survived (didn’t like waking up in intensive care though)… and yes… getting a diagnosis of RRMS (I was back in hospital for steroids and an MRI scan).
My wife is wonderfully supportive and I don’t know what I’d do without her…she has walked every inch of the road with me and further.
I was glad to resume work. Its good to be amongst people regulary. I’ve found, and still do, that the MS Society is invaluable. This is not at the expense of my Neurologist, the MS Nurses and neurophysiotherapist. My G.P. is very clued in to this MS thing and the practice has been able to give me medical and emotional support when I needed it.
I Hope you can get the support you should have,
Take care,
Jonny
p.s. What’s rsd?