Multiple Sclerosis (MS) Support Group
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I am going to vent - sorry in advance but as they say sometimes it just gets too much.
I have been really struggling for over a month with a variety of ms issues. The worst of which was the eye trouble. My right eye basically went blind & left eye was following fast. It also closed & did the rapid blinking.
Did a rapid run around all the specialists with neurologist on friday then eye specialist at hospital the following monday & 4 hours worth of tests & different Drs looking at it with drops etc. Was told it was nerve damage & could easily go totally blind so freaked out. Then told had to wait for a appt at eye & ear hospital & that could take anything from weeks on, burst out crying as couldn't take thought of waiting. By time was leaving the registrar (head Dr) came out with the phone & the hospital had got me in that Wednesday for the specialised testing that they are the only ones in state to have the machine.
Went there on the Wednesday & by this stage all ms symptoms had kicked in so could not get out of w/chair much at all either. Had the testing done, blacked out during the kaleidoscope one of all these different things spinning & I was supposed to say yes when saw the right letter in the middle. They think that was seizures or similar. That appt also took hours as had 2 different lots of tests & then wait to see the specialist after it for results. Their decision was that I needed steroids & wanted me to see neurologist again to organise it.
Rang neurologist rooms next day & got an appt on Friday to see him. He took look at few of my reactions & mainly eyes, which were real bad by then & said - think you need treatment, when can we start. I thought he meant have drip & go home but when I said "well Im here now" & he replied I will get the bed manager & we will "create a bed for you" I was shocked as it is hard to get beds in our public hospitals.
Then I had to throw in another issue. I said I need to be out of hospital early next week as mother in law had passed away on the Wednesday night. We didn't know when the funeral was as the coroners had taken the body but thought early the following week. He promised I would be out in time.
Got room within a few hours & on drip that night. Saw neurology team that night & they were surprised I had managed till then as I literally could not lift myself to get on/off bed or to loo. I couldn't see out of right eye & left eye was constantly blinking & teary.
The next day (Saturday) I lost the plot totally. I could barely get out of bed & let them just come & empty catheter bag at the bed rather than get up with assistance, didn't have a walker so wasn't allowed out of bed by myself. Husband came in & brought me a few things & he was really struggling with me being in hospital, not being able to see properly, walk, speech was bad etc etc. He needed me at home too as he was was struggling with loss of his Mum, she was 92 but we were very close to her. She was more a Mum to me than mine is.
Later in day my leg decided to spasm madly but then my good leg joined in so both were spasming, tried to lay down, nurse tried to put piloow under them to help & that made them worse, then back went into severe spasm & I couldnt move at all. They ended up calling the Dr's giving me valium, tramadol & ended up with morphine through the drip. The legs went for over 1 hour & back didnt release for long time after that so couldnt move or move head etc.
I was in agony & just burst into tears & couldnt stop. They kept aksing me what was wrong & I felt like saying -where do I start? just wanted hubby there but we live about 1-1.5hr drive from hospital I was in so couldn't ask him to drive back & nothing he could do.
When tea came I couldnt move enough to take covers off food or open containers so had to get help with everything. Made me feel really useless to say the least. Had a really nice nurse looking after me which was good.
Had tv on just to take away from the boredom too.
Sunday was boring to say least, saw Dr's nurses & had tv on for background. Half the time couldnt focus on it but fell asleep with it on better. Had phone call from Sister in law with details of funeral for that Wednesday so I needed to be home by Tuesday at latest. I was reading a poem at the service that I had written about Mum & she knew that.
Saw neuro's on Monday & they were talking rehabilitation after the hospital, not home. I freaked out & said that I refused as had to be home to be with husband before & after funeral.
Had assessment by physio & ot's & they agreed I could go home as have modified house & local physio group etc. Was given a walker so that I could get out of bed & move around a bit. (I had been admitted after dr appt that I went to from work on electric w/chair).
Then had to wait for all the paperwork to be signed off by neuro's next morning.
I have been really struggling for over a month with a variety of ms issues. The worst of which was the eye trouble. My right eye basically went blind & left eye was following fast. It also closed & did the rapid blinking.
Did a rapid run around all the specialists with neurologist on friday then eye specialist at hospital the following monday & 4 hours worth of tests & different Drs looking at it with drops etc. Was told it was nerve damage & could easily go totally blind so freaked out. Then told had to wait for a appt at eye & ear hospital & that could take anything from weeks on, burst out crying as couldn't take thought of waiting. By time was leaving the registrar (head Dr) came out with the phone & the hospital had got me in that Wednesday for the specialised testing that they are the only ones in state to have the machine.
Went there on the Wednesday & by this stage all ms symptoms had kicked in so could not get out of w/chair much at all either. Had the testing done, blacked out during the kaleidoscope one of all these different things spinning & I was supposed to say yes when saw the right letter in the middle. They think that was seizures or similar. That appt also took hours as had 2 different lots of tests & then wait to see the specialist after it for results. Their decision was that I needed steroids & wanted me to see neurologist again to organise it.
Rang neurologist rooms next day & got an appt on Friday to see him. He took look at few of my reactions & mainly eyes, which were real bad by then & said - think you need treatment, when can we start. I thought he meant have drip & go home but when I said "well Im here now" & he replied I will get the bed manager & we will "create a bed for you" I was shocked as it is hard to get beds in our public hospitals.
Then I had to throw in another issue. I said I need to be out of hospital early next week as mother in law had passed away on the Wednesday night. We didn't know when the funeral was as the coroners had taken the body but thought early the following week. He promised I would be out in time.
Got room within a few hours & on drip that night. Saw neurology team that night & they were surprised I had managed till then as I literally could not lift myself to get on/off bed or to loo. I couldn't see out of right eye & left eye was constantly blinking & teary.
The next day (Saturday) I lost the plot totally. I could barely get out of bed & let them just come & empty catheter bag at the bed rather than get up with assistance, didn't have a walker so wasn't allowed out of bed by myself. Husband came in & brought me a few things & he was really struggling with me being in hospital, not being able to see properly, walk, speech was bad etc etc. He needed me at home too as he was was struggling with loss of his Mum, she was 92 but we were very close to her. She was more a Mum to me than mine is.
Later in day my leg decided to spasm madly but then my good leg joined in so both were spasming, tried to lay down, nurse tried to put piloow under them to help & that made them worse, then back went into severe spasm & I couldnt move at all. They ended up calling the Dr's giving me valium, tramadol & ended up with morphine through the drip. The legs went for over 1 hour & back didnt release for long time after that so couldnt move or move head etc.
I was in agony & just burst into tears & couldnt stop. They kept aksing me what was wrong & I felt like saying -where do I start? just wanted hubby there but we live about 1-1.5hr drive from hospital I was in so couldn't ask him to drive back & nothing he could do.
When tea came I couldnt move enough to take covers off food or open containers so had to get help with everything. Made me feel really useless to say the least. Had a really nice nurse looking after me which was good.
Had tv on just to take away from the boredom too.
Sunday was boring to say least, saw Dr's nurses & had tv on for background. Half the time couldnt focus on it but fell asleep with it on better. Had phone call from Sister in law with details of funeral for that Wednesday so I needed to be home by Tuesday at latest. I was reading a poem at the service that I had written about Mum & she knew that.
Saw neuro's on Monday & they were talking rehabilitation after the hospital, not home. I freaked out & said that I refused as had to be home to be with husband before & after funeral.
Had assessment by physio & ot's & they agreed I could go home as have modified house & local physio group etc. Was given a walker so that I could get out of bed & move around a bit. (I had been admitted after dr appt that I went to from work on electric w/chair).
Then had to wait for all the paperwork to be signed off by neuro's next morning.
I certainly hope that you feel better - emotionally and physically - very soon. I'm glad to hear that your doctors were working so hard for you, and I can only pray that continues as you go through the remaining frustrations of this relapse.
I'm glad to hear you're back at work - work can be theraputic in a way - just remember not too get stressed or push yourself too far!
My condolences to you and David on the loss of his mom, that can be such a hard burden to bear.
I am so sorry that this is happening to you.
I hope you get better very soon, I will pray for you.
God bless you.
I just tried to read what I wrote last night - so sorry for typos & hope it was understandable. I was very tired & my eyes are giving me more problems too.
Thanks shellytab & rodrigo too for your lovely messages.
All are appreciated.
Went to work today & should have stayed home. Nothing I did went right but at least I got some laughs.
I got caught with the footplate of electric wheelchair swinging out as I tried to get it manually through a door (have to hold a button to get door to stay open). Now the foot plate is pointing inwards & not locking in place. I had presumed that with a new wheelchair there would be some maintenance/service worked into it. It hasn't got any sort of repair type thing & anyway they say it is user damage - can't really deny that.
Have got onto the original salesman & he said if we take the legs off the chair & drop them in to him at work (not far from home), he will get them looked at, straightened & give them back to me, that was much better service I thought so just hope it all works out.
That was start of day.
Then because I hadn't been into work since Thursday there was a couple of large piles of work on my desk. I tried to move one pile to a different place on the desk, took a step backwards & of course - no balance so stumbled backwards, landed in chair so that was ok, but the pile of work I had in my hand went all over the floor. Lucky it was still all stapled together but made a mess & had to resort it too. Had to laugh at how much mess I had made in first 30mins.
I am in an office by myself & the others heard me & supervisor came in to see what I was laughing at - saw me sitting in my chair, papers all over the floor in all directions, walker out of my reach - pushed away & even keyboard moved to weird position. He looked at me & asked if I was ok & I asked "could I go out of the office & come back in & start the day again?"
When i told him what happened with the papers he said I should have asked for help - bit hard when i am separate (wont be when we move in August to new building). Anyway he got down on the floor & picked up all the papers & put them on the desk in the right position on my desk.
You have to get a laugh out of it at least.
Anyway to end on a positive (sort of), hubby got home & looked at chair & he has managed to move the leg & foot plate back into an almost right position. He said he didn't have time etc to be able to drop them back at the place we got the chair from.
I am tired so not cooking tea - pizza from the freezer tonight!