Multiple Sclerosis (MS) Support Group
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Update & bit of whine - sorry.
Realised I havent updated on here for a while. Been struggling since mid june with flare up just getting worse as time goes on.
left leg has been barely lifting since about late june & right eye shut or barely open same. Have had all sorts if tests by opthomologist at hospital & put down to ms, have seen neurologist 2 times. Had drip 3 days end aug & followed up wit oral from local gp mid september. neither helped at all.
I was basically a rag doll not in control of arms legs etc when gp put me on oral after trying to send me to hospital & refused -3rd time that day someone had suggested it & I kept saying no as nothing they could do to help that i couldnt do at home. Dr gave up & gave me oral tablets.
Neuro tested me for tysabri but went back & I jcv+ so when looked at other health conditions not safe & none new ones better than gilenya & could be worse side effects. nothing much can do except 1/1 physio & group when I can. eat healthier etc.
Speech varies from volume to husky & constantly can't find words or say them clearly. Memory just sucks all the time, no other way to put it.
I got this horrible spasm from mid spine - base of neck & down left side on saturday & it wiped out the whole left side to useless & pain. couldnt turn neck/head around much or put head down. Lasted more than 3 hours before I could even move my arm a little.
Had physio who did neck & spine massage which helped & had acupuncture who did it on the spine & neck area & that helped a bit later. It didn't last long as I cant remember what day it was but the pain & then no movement again on Thursday, I think.
I must have had another one last night & a big one as I have not been able to use left side at all today & it is aching. Can't turn head far or open mouth much (some would sat a blessing), left arm I have worked up to resting about waist high.
The right eye is mostly closed or open a slit & blurred & hot sting unless I use eye spray.
Wednesday the left eye decided to blur sometimes too & half open, makes seeing hard. It has varied since then.
Right foot isn't lifting much either. Shoe shuffle at the moment.
Looks like in for a fun night of try to sleep tonight as when things hurt like this get worse at night.
Just typical with the way things going for me now.
Really struggling not to get down about it all going to the crapper. I usually look at things positively but struggle now.
How do others cope when ms goes bad for long time & just keeps throwing more crap? This is almost 5 months of it, never had it this long. I'm really struggling
Realised I havent updated on here for a while. Been struggling since mid june with flare up just getting worse as time goes on.
left leg has been barely lifting since about late june & right eye shut or barely open same. Have had all sorts if tests by opthomologist at hospital & put down to ms, have seen neurologist 2 times. Had drip 3 days end aug & followed up wit oral from local gp mid september. neither helped at all.
I was basically a rag doll not in control of arms legs etc when gp put me on oral after trying to send me to hospital & refused -3rd time that day someone had suggested it & I kept saying no as nothing they could do to help that i couldnt do at home. Dr gave up & gave me oral tablets.
Neuro tested me for tysabri but went back & I jcv+ so when looked at other health conditions not safe & none new ones better than gilenya & could be worse side effects. nothing much can do except 1/1 physio & group when I can. eat healthier etc.
Speech varies from volume to husky & constantly can't find words or say them clearly. Memory just sucks all the time, no other way to put it.
I got this horrible spasm from mid spine - base of neck & down left side on saturday & it wiped out the whole left side to useless & pain. couldnt turn neck/head around much or put head down. Lasted more than 3 hours before I could even move my arm a little.
Had physio who did neck & spine massage which helped & had acupuncture who did it on the spine & neck area & that helped a bit later. It didn't last long as I cant remember what day it was but the pain & then no movement again on Thursday, I think.
I must have had another one last night & a big one as I have not been able to use left side at all today & it is aching. Can't turn head far or open mouth much (some would sat a blessing), left arm I have worked up to resting about waist high.
The right eye is mostly closed or open a slit & blurred & hot sting unless I use eye spray.
Wednesday the left eye decided to blur sometimes too & half open, makes seeing hard. It has varied since then.
Right foot isn't lifting much either. Shoe shuffle at the moment.
Looks like in for a fun night of try to sleep tonight as when things hurt like this get worse at night.
Just typical with the way things going for me now.
Really struggling not to get down about it all going to the crapper. I usually look at things positively but struggle now.
How do others cope when ms goes bad for long time & just keeps throwing more crap? This is almost 5 months of it, never had it this long. I'm really struggling
Has your Dr. suggested Tecfidera?
I am allergic to a lot of foods as it is so eat healthy as allergic to acidic, spicy, certain colours,
My left side is useless more than not & hubby has to cut meat for me & lift legs in bed. He also has to help me get drinks as I spill when pouring as not steady, I leave mess on bench if try to pour there si pour over sink during the day.
I am getting more of the pain shooting from back to neck & down left side & it is real bad as stops me from moving at all.
My right eye is starting to blur & close too so that makes everything real hard.
I went in to see the neurologist on Friday 6th for an emergency appt. (rang day before). He took one look at me & knew I wasn't very well at all. He did a few tests & then said "you know what this means" & it meant I was being admitted.
He wasn't sure if I had some infection as well as I was so low & also coughing.
I was at the point where left leg was dragging, right leg was starting to do the same so was restricted to wheelchair. My speech was really bad, I was confused & couldn't remember things. My left side didn't function much at all.
I was admitted & seen by Neurology teams & they thought I was definitely having a bad exacerbation so put me on 1000mg methyl/prednisolone drip for 3 days.
In the meantime my left leg was swelling from knee down again & I had open excema on my feet & the skin on the legs was breaking apart basically. It turned out I had cellulitis in both legs & they were infected as well which is what made my ms worse as any infection makes the ms worse.
I had the 3 doses of methyl/prednisolone & they did help. I am able to walk a bit better but it is going to take time for me to regain strength though.
I did see the physio a couple of times & the occupational therapist too. They didn't do anything other than to get me walking better & tried to do a step. They will be the hard part for me as I have not got the strength in left side to lift leg much.
On Wednesday night (I think), I got a big problem with my left eye with pain & black floaties/spots where I couldn't see.
I t is still restricted vision & left side soesnt see anything till right there at the eye as oerioheral vision is shot.
Finally saw any eye Dr Friday at 1pm (approx) & she could see the issues I am having. Unfortunately because it is nerve damage it wont repair either so got to get used to it.
Got home last night (Friday) as David picked me up from hospital when he finished work & glad to be home.
Mum had phoned on mobile in the afternoon & phoned again at noght. I really didn't want to talk to anyone but figured I better ring her. She got on her inquisitive stage & asked if eye was fixed (LOL) & i told her ""no its nerve damage so permanent" ske kept asking what caused it & because I was tired & didn't want to "play nice" I just told her it's ms & we don't know the cause. Mum kept on about so long as you have come out better - how with loss of most vision in one eye? that's good. I didn't ask about her or anything else just said going for a cup of tea. She really knows how to make it hard to be nice a lot. She even asked again if we were going to make Christmas lunch on Christmas eve. I said -I told you no & you know David works weekdays. Then she cut short as if I had upset her. DONT CARE!
Home now & resting.
Was nice to sleep in my own bed with hubby too. Very tired today.
I got home & left the wire door locked but main door open & when my carer for cooking arrived (& she is one that does personal care weekly) she could hear me snoring. Called out to me but I didn't respond so she used the key safe on the front door to get keys & let herself in.
I was directing her to cook & what etc & kept just losing it & falling into a sleep like reaction but eyes still open. She poured me a cordial then a bowl of yogurt then asked if I am hot & wondered about that so shut the door & turned air conditioner on, heater control said it was 27'c/80.6f Once that was on I improved quickly & got some cold drinks into me.
I am now having a cold drink beside me & drinking heaps every day. It's scary with everything going on at once.
your a strong person and you have used your strength well in dealing with your ms and all the complications from ms.
Definitely do your best to keep cool. . . I got myself various cooling paraphernalia, which I look forward to trying (it came just as the summer was ending up here).
Like Chrissy suggests, maybe doing an adjustment to diet might help. However, I totally admit that I think most of the extra things are not really helping. The only thing I have definitely improved/reduced is the pain in my legs. Since I am taking so many supplements etc who knows WHAT is doing the trick. I am trying to be gluten-free (suspect that really isn't my problem), am eating a fair amount of nuts for the magnesium, and turmeric mixed with honey in yogurt in addition to my 5 supplements. (D, B, magnesium, COQ10 & multi). Legs not hurting so much anymore, but nothing else has improved. . .
Good luck!