Multiple Sclerosis (MS) Support Group
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Thought I would update on how the Botox has gone.
Quick recap - Right eye was very painful, almost closed, blurred vision & flickering/blinking constantly after a flare up in May. In a space of 2 weeks I lost the vision basically.
After Neurologist Friday - neuro-opthomologist following Monday & lots of tests, then eye & ear hospital for more tests on Wednesday, back to neurologist on the Friday & being in full flare as well by then, in hospital that night for the methyl/pred drip. Got out (because of MIL funeral) on Tuesday, then back very soon after to see neuro-opthomologist for Botox injections. Had 10 injections around both eyes on August 1.
Had good reaction with eye open for about a week then it closed again with very little misty vision. Went back to the neuro-opthomologist on about 15th & they said they were pleased because the constant fast blinking/flickering had stopped even though couldn't see through the eye was partially open sometimes. They said it still may come good so give it time. Very hard to do from my point of view when I just wanted to see.
This week the right eye has opened some of the time & very watery even though I don't have proper vision as it is very misty & not focussed all the time. Thursday onwards I had very painful left eye, from behind the eye & it was coming & going sometimes. Friday it was mainly feeling like it was burning behind the eye & started flickering some of the time too. Very scary as this is how the left eye started originally. Saturday it was still very sore & started watering too & at times I couldn't see through it too. Very hard to walk even in the house.
I have found it very hard to manouvre around even in the house so used the walker to try to stop walking into the walls etc. I have been struggling since the right eye started to close/flicker etc. I have been walking into corners/walls, not judging anything very well & a lot of the time had to close right eye to have any hope of getting around or seeing reasonably. I am lucky I have an apple computer as i can enlarge the print easily by just using the key pad.
Saturday I have mainly rested in my chair watching a dvd & when I move use my walker. Have gone outside to hang washing but had sunglasses on, using walker & basicaly a shuffle walk so I could try to judge where my feet are. (Both have gone numb as well since Wednesday) I have had a lot of pain to walk with pain & cramps in both feet & bad spasms absolutely straightening & shooting pain right up the left leg to groin & making it dead weight at the same time (if that makes sense, only way I can describe it).
Add to that both hands are cramping, left is worse as usual, & not being able to open the hands. Have felt nauseous a lot from pain & not able to tolerate the latest pain patches I am supposed to use. They are itchy & burning within 24 hours & peeling off on average anything from 2-4 days when supposed to last 7 days. I have 1x20mg &1x5mg norspan. GP said to use cortisone cream & hope body gets used to as my skin is sensitive etc as I get excema & have done form baby. Pain nurse said my skin has actually burnt & small blisters formed so in danger of infection too - just what I don't need.
With all of this fatigue has gone through the roof, (have dosed off several times while writing this) which doesn't help anything.
I phoned the pain clinic & have been able to get an appt this Thursday instead of end of September when I explained my reaction to the pain killers & the pain & fatigue I am suffering daily.
My speech, word finding, memory & control of emotions are really bad. I have been bursting into tears or getting really mad at the world & just ranting (even if no one there to listen) & been depressed for the first time in a long time (that I have admitted too).
Just to make life interesting & more scary I have also had more seizures/blank outs in the last few weeks & they are getting worse & some lasting longer. Some are only 30 seconds & others can be 10 minutes (these are the one's I know of when others have been around & timed them).
I have not been coping well by myself the last few weeks really, although for patches I will be ok, then reality & how it sucks & what I am missing hits me again & I go right down. I try to cover it in front of others & act like usual but it is real hard & I get real mad quick.
Lost my temper a bit at work but held my tongue till calmed down & then spoke to the person who had offended/made me boil. He had been making a joke of his eyes getting sore, struggling to see, didn't want to wear glasses till "old" & didn't want to get eyes tested"incase" as couldn't handle a problem & then they were making a joke of going blind. I saw RED big time. When I had a chance I pulled him aside (team colleague & I get on well with him & he sees me as an older friend/mum sort of) & told him how he had offended me by joking about blindness with the others. Explained how I am struggling in the electric wheelchair, judging doorways/corners etc & working with paperwork as one eye not working. Challenged him to when home put a patch/gauze over one eye & see how it affected him with not only vision but other ways. I know I got through to him as he said he couldn't get to his eyes tested this weekend but would try either after work or next weekend & promised to do it within month. Thought I handled that ok, didn't lose my temper at him, butt into conversation & be rude, but got my point over to him in a way he understood & also explained a bit more about how ms can affect me/others & how important eye sight is without scaring him too much. I did also say that he may not even need glasses it could just be tired eyes & need rest/eye drops but needs to be tested at no cost.
That was a challenge for me & my temper for sure so was pleased I managed to control myself & deal it in a better way than jumping in without calming down & thinking about what to say, then approaching him on a one-one basis. If I had jumped in probably would have got into an argument & got into trouble with bosses.
I have at least asked for help this time & recognised that I am not coping. Have spoken/seen a social worker from ms society, been seen by chronic pain nurse at local community centre & been to gp (not much help there). Other times I have not admitted to it & buried head in sand etc. It has taken me a long time to get to this point.
Thanks for letting me vent & sorry for so much & different tracks. Needed to let it out where safe & wont be judged but understood too.
Quick recap - Right eye was very painful, almost closed, blurred vision & flickering/blinking constantly after a flare up in May. In a space of 2 weeks I lost the vision basically.
After Neurologist Friday - neuro-opthomologist following Monday & lots of tests, then eye & ear hospital for more tests on Wednesday, back to neurologist on the Friday & being in full flare as well by then, in hospital that night for the methyl/pred drip. Got out (because of MIL funeral) on Tuesday, then back very soon after to see neuro-opthomologist for Botox injections. Had 10 injections around both eyes on August 1.
Had good reaction with eye open for about a week then it closed again with very little misty vision. Went back to the neuro-opthomologist on about 15th & they said they were pleased because the constant fast blinking/flickering had stopped even though couldn't see through the eye was partially open sometimes. They said it still may come good so give it time. Very hard to do from my point of view when I just wanted to see.
This week the right eye has opened some of the time & very watery even though I don't have proper vision as it is very misty & not focussed all the time. Thursday onwards I had very painful left eye, from behind the eye & it was coming & going sometimes. Friday it was mainly feeling like it was burning behind the eye & started flickering some of the time too. Very scary as this is how the left eye started originally. Saturday it was still very sore & started watering too & at times I couldn't see through it too. Very hard to walk even in the house.
I have found it very hard to manouvre around even in the house so used the walker to try to stop walking into the walls etc. I have been struggling since the right eye started to close/flicker etc. I have been walking into corners/walls, not judging anything very well & a lot of the time had to close right eye to have any hope of getting around or seeing reasonably. I am lucky I have an apple computer as i can enlarge the print easily by just using the key pad.
Saturday I have mainly rested in my chair watching a dvd & when I move use my walker. Have gone outside to hang washing but had sunglasses on, using walker & basicaly a shuffle walk so I could try to judge where my feet are. (Both have gone numb as well since Wednesday) I have had a lot of pain to walk with pain & cramps in both feet & bad spasms absolutely straightening & shooting pain right up the left leg to groin & making it dead weight at the same time (if that makes sense, only way I can describe it).
Add to that both hands are cramping, left is worse as usual, & not being able to open the hands. Have felt nauseous a lot from pain & not able to tolerate the latest pain patches I am supposed to use. They are itchy & burning within 24 hours & peeling off on average anything from 2-4 days when supposed to last 7 days. I have 1x20mg &1x5mg norspan. GP said to use cortisone cream & hope body gets used to as my skin is sensitive etc as I get excema & have done form baby. Pain nurse said my skin has actually burnt & small blisters formed so in danger of infection too - just what I don't need.
With all of this fatigue has gone through the roof, (have dosed off several times while writing this) which doesn't help anything.
I phoned the pain clinic & have been able to get an appt this Thursday instead of end of September when I explained my reaction to the pain killers & the pain & fatigue I am suffering daily.
My speech, word finding, memory & control of emotions are really bad. I have been bursting into tears or getting really mad at the world & just ranting (even if no one there to listen) & been depressed for the first time in a long time (that I have admitted too).
Just to make life interesting & more scary I have also had more seizures/blank outs in the last few weeks & they are getting worse & some lasting longer. Some are only 30 seconds & others can be 10 minutes (these are the one's I know of when others have been around & timed them).
I have not been coping well by myself the last few weeks really, although for patches I will be ok, then reality & how it sucks & what I am missing hits me again & I go right down. I try to cover it in front of others & act like usual but it is real hard & I get real mad quick.
Lost my temper a bit at work but held my tongue till calmed down & then spoke to the person who had offended/made me boil. He had been making a joke of his eyes getting sore, struggling to see, didn't want to wear glasses till "old" & didn't want to get eyes tested"incase" as couldn't handle a problem & then they were making a joke of going blind. I saw RED big time. When I had a chance I pulled him aside (team colleague & I get on well with him & he sees me as an older friend/mum sort of) & told him how he had offended me by joking about blindness with the others. Explained how I am struggling in the electric wheelchair, judging doorways/corners etc & working with paperwork as one eye not working. Challenged him to when home put a patch/gauze over one eye & see how it affected him with not only vision but other ways. I know I got through to him as he said he couldn't get to his eyes tested this weekend but would try either after work or next weekend & promised to do it within month. Thought I handled that ok, didn't lose my temper at him, butt into conversation & be rude, but got my point over to him in a way he understood & also explained a bit more about how ms can affect me/others & how important eye sight is without scaring him too much. I did also say that he may not even need glasses it could just be tired eyes & need rest/eye drops but needs to be tested at no cost.
That was a challenge for me & my temper for sure so was pleased I managed to control myself & deal it in a better way than jumping in without calming down & thinking about what to say, then approaching him on a one-one basis. If I had jumped in probably would have got into an argument & got into trouble with bosses.
I have at least asked for help this time & recognised that I am not coping. Have spoken/seen a social worker from ms society, been seen by chronic pain nurse at local community centre & been to gp (not much help there). Other times I have not admitted to it & buried head in sand etc. It has taken me a long time to get to this point.
Thanks for letting me vent & sorry for so much & different tracks. Needed to let it out where safe & wont be judged but understood too.
I've often said that the biggest problem that I have with this disease i OTHER PEOPLE and the way that they treat me. I've been called a fraud, a liar, you name it.
I'm sorry to learn you are not feeling at all well and have continued to struggle so much. :(
You did good by calling that idiot at work out re: eyesight.
I saw someone making a joke out of Stevie Wonder yesterday and his blindness. It angered me.
Few people have a clue what it is like to be blind. I know and it is frightening as can be.
I don't know what else to say to you except try to hang-on and please, do try to get as much rest as possible.
I tend to get better faster if I get a lot of rest.
I'm not sure how much rest you are getting given your very stressful situation which I am sure is not helping one bit.
Again, get well soon Sue.
Your friend,
hope4acure
I was shaky & very upset so took some more pain killers & sat up for a while then went back to bed.
My pain patches were already painful - burning, itchy & hurting & I I had only put them on Friday night, supposed to last 7 nights. I was trying not to pull them off or scratch around them. At about 7am I was awake again & where the 20mg one was, it was too painful & I could not take it any more. Tried to get it off (like peeling a bandaid so not hard) but couldn't even get my finders to do that so had to get hubby to wake up & pull it off for me. Skin was already red underneath it & it was probably only 30 hours. I put cortisone ointment on it & tried to go back to sleep, dozed off mainly & gave up at 9am & got up.
Glad going to pain clinic end this week. Wont come soon enough!
Thanks again