Multiple Sclerosis (MS) Support Group
This community is a place where members can discuss current events and weigh in on what's going on in the world.
I am so fed up with so much going wrong constantly.
I thought I was doing well. I have healed ok after the bowel surgery & complications.
Adapting better to the catheter than I thought I would. It has actually made life a lot better for me without the "accidents" etc.
I have been having these "blackouts" & what looks like seizures for almost a year & getting worse so I have had eeg's etc. & lots of tests. I was told not to drive at all, as not safe so that was a big thing for me. I am used to being independent & now have to use the scooter or get lifts/taxi. This means it me longer to get anywhere & more organising. I have still been having the "episodes".
I had a week monitoring to try to see if it is epilepsy.
I went to the neuro for the results & as usual I dont fit into the "box" eeg didnt show enough so no dx. They did see the "episodes" that look like seizures & black outs but now saying that it could be caused by ms??? WTF
Because of this there is no medication he can give me to help. If it was epilepsy or anything else he could give me something but wont now.
Next bombshell - with the blackouts I have been having I shouldnt be out on my scooter by myself. He said I could black out & be in danger like ride over the gutter to the road or tip etc. How am I supposed to get out. I tried to explain that if I stop the scooter stops but he said I could spasm & hold the lever down. He was not happy when I said that I had used the scooter to get there (I had gone in on the walker), he couldnt work out how I had both & I told him that I carry the walker on the back. He told me it was dangerous for me to scooter to the train then hospital etc.
When I said "but I do that to the city 3 days a week for work" he was dumbfounded. He thought I had given up ages ago. Then he said that the level of fatigue I am having could just be an indication of the fatigue but my body & brain are tryong to shut down???? I still dont understand how that can happen & couldnt understand his explanation.
He ended up just saying that I am pushing through the pain & fatigue barrier & that could be why I am having the issues.
Next statement - he wants me to see a counsellor or pschologist to see if I have other issues. Hello, I have already done that & there is nothing that they could find other than the normal crap that goes with dealing with all the changes that ms has made happen to me & affected both of us. I told him if he looked back he would see reports from neuro-phsche, & counsellors, he did this & then backed down on that.
I pushed him for how did he expect me to get around if I wasnt to use the scooter, he said taxis, family, friends - that doesnt work for me as Mum wont drive me around & I dont like imposing on friends (the few that will help). l was not happy for sure. He ended up saying he would prefer me on an electic w/chair which only operates with hand pressure but to be careful on the scooter.
I am in the process of trying to get one through a work program funded by the government through the ms society but of course it will take time.
Oh well I have had my rant now. Now I have to go to gp LOL. Got to get a certificate to state I can go back to five hours a day.
Thanks for reading.
I thought I was doing well. I have healed ok after the bowel surgery & complications.
Adapting better to the catheter than I thought I would. It has actually made life a lot better for me without the "accidents" etc.
I have been having these "blackouts" & what looks like seizures for almost a year & getting worse so I have had eeg's etc. & lots of tests. I was told not to drive at all, as not safe so that was a big thing for me. I am used to being independent & now have to use the scooter or get lifts/taxi. This means it me longer to get anywhere & more organising. I have still been having the "episodes".
I had a week monitoring to try to see if it is epilepsy.
I went to the neuro for the results & as usual I dont fit into the "box" eeg didnt show enough so no dx. They did see the "episodes" that look like seizures & black outs but now saying that it could be caused by ms??? WTF
Because of this there is no medication he can give me to help. If it was epilepsy or anything else he could give me something but wont now.
Next bombshell - with the blackouts I have been having I shouldnt be out on my scooter by myself. He said I could black out & be in danger like ride over the gutter to the road or tip etc. How am I supposed to get out. I tried to explain that if I stop the scooter stops but he said I could spasm & hold the lever down. He was not happy when I said that I had used the scooter to get there (I had gone in on the walker), he couldnt work out how I had both & I told him that I carry the walker on the back. He told me it was dangerous for me to scooter to the train then hospital etc.
When I said "but I do that to the city 3 days a week for work" he was dumbfounded. He thought I had given up ages ago. Then he said that the level of fatigue I am having could just be an indication of the fatigue but my body & brain are tryong to shut down???? I still dont understand how that can happen & couldnt understand his explanation.
He ended up just saying that I am pushing through the pain & fatigue barrier & that could be why I am having the issues.
Next statement - he wants me to see a counsellor or pschologist to see if I have other issues. Hello, I have already done that & there is nothing that they could find other than the normal crap that goes with dealing with all the changes that ms has made happen to me & affected both of us. I told him if he looked back he would see reports from neuro-phsche, & counsellors, he did this & then backed down on that.
I pushed him for how did he expect me to get around if I wasnt to use the scooter, he said taxis, family, friends - that doesnt work for me as Mum wont drive me around & I dont like imposing on friends (the few that will help). l was not happy for sure. He ended up saying he would prefer me on an electic w/chair which only operates with hand pressure but to be careful on the scooter.
I am in the process of trying to get one through a work program funded by the government through the ms society but of course it will take time.
Oh well I have had my rant now. Now I have to go to gp LOL. Got to get a certificate to state I can go back to five hours a day.
Thanks for reading.
Sorry you are going through so much. (((hugs)))
Giving up driving has been the hardest thing to do. We have no bus service where i live so I'm dependent upon my husband or kids for rides eveywhere I go. But you have nobody, and for that I'm sorry. I worry one day that I will be in your shoes, not having my husband Dennis to take me somewhere or my kids and here I've gone and given up my drivers license, but it has to be. Just like you, it has to be. You could hurt yourself on your scooter, or heaven help, somebody else. I know this is not an easy thing for you to do, but maybe the time is now to give up driving around?
Does your town have any support system for non-drivers? I know we have something called Metro Access in the US, which will take non-drivers with ageing or handi=caps around town as needed. Look into it, and see.
Good luck sue. I feel for you,.
I am still using my scooter but trying to get an electric w/chair through ms society & an employment program.
It is just another kick when down to my way of thinking.
Thanks Nahile & Tickey too, sorry you are having black outs too Tickey & do try to get them investigated at least even though I didnt get answers.
I am just very frustrated at the moment & feel like things are just getting too much sometimes, not much help but lots of people to say dont do things.
Struggling to cope at the moment.
Thanks for reading & responding.