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ON in both eyes now!!

Hi all

Started a new post as other one was getting a bit long…

Well it seems, according to eye dr he suspects I now have ON in both eyes plus blurred vision now aswell in both(last 2 wks).which is constant but gets worse through the day. My night vision in right eye is crap ie I cant tell where the pavements end and the road begins…when I am out on my trike…! Eye dr is going to speak to eye neuros today…and see what they say…maybe bring my appt to earlier than 30th march…I thought the blurred vison was due to the dry eyes but he says not…and after a week of steroid drops…dry eyes better…at least thats one thing sorted but continuing with the cellusivic drops as and when.

.My left arm is less weak but quite stiff and sore now…with reduced sensation also… The pain behind right eye is simillar to what I had in left.if not more so…no improvement as yet in ON in left eye…and both my eyes feel bruised and tender…and wobbly vision in both continues…I attempted some gentle yoga yesterday…which was a start but I soon felt nausea and the muscles in my legs were shaking…I think the physio called it muscle fatigue? which is evident in my neck also …stil it was good to do something after not being up to any excercise for 4 days…lol

em

Bummer

It’s really good that the eye docs are on your side and trying to be proactive. It does sound awfully like a relapse so hopefully they can get you in to see a neuro soon.

Muscle fatigue is a b****. Mine has improved with going to the gym regularly, so hopefully doing the yoga will help you too - don’t push it though; take it slow!

Karen x

Hi Karen. Thanks…it is a bummer plus my motability car has to go back next week…not that I can drive…but unable to order my new one until I can test drive it! So am keeping the allowence to use to get about until my eyes have settled down…how long that will be who knows…hopefully in next few weeks for the left eye… lol

it is re eye doc at acute care eye clinic…and bless him he did his best but its good to know hes on my side…but yes I think the eye neuros need to see me sooner…realised the main eye clinic covers Bham and the midlands too…so no wonder it`s hard to get an appt!!

Ahh yes re muscle faitigue…even my good leg was shaking…most odd…but yes wil take it steady…dont have much choice at the minute…Am keeping an open mind on the relapse aspect but as you say it could well be one… I want to keep as active as I can…as it helps all round re sleep too…right am off for a snooze and to rest my eyes… How long do you go to the gym for? I thought I might try swimming too once my eyes are ok…bit of a mermaid me!! lol

Em

I go to the gym with some others from the local MSS branch (http://mshillingdon.org/modules.php?name=Content&pa=showpage&pid=8). The usual times are Tuesdays and Thursdays at 10am and Monday and Fridays at 2pm so there’s something to suit everyone. Knowing that others are expecting you is a really good stimulus to get out of bed!

We are in the gym for about an hour I guess, then spend at least another hour over coffee

When I started I could do 5 minutes on the exercise bike (slowly and with some difficulty). I can now do 20 minutes!

The guy in the wheelchair in the photo on the website is not only using the exercise bike - he’s started using the treadmill!

I do a stint on the bike, then a shorter one on the rowing machine, use the machines to work my legs and then do core exercises with the gym ball. I finish off with a good stretch. I vary how much I do depending on how well I am. There really is no point in doing very much if it’s a bad day (and I don’t always make it there).

Our local leisure centre does a discount for the disabled, so it only costs £2.60 a gym visit and carers go free (and can use the gym while they’re there). I think it’s less for the pool. You should definitely find out about your local places once you’re doing a bit better - they probably do something similar. It makes it much more affordable (especially if you split the cost with a friend), and it’s really good to keep fit!

Karen x

Hey Karen…wow sounds like you have done so well and building up your strength and stamina… very admirable for sure…and all in your group sound motivated…I like working out from home and have devised my own workout…but the social aspect is important…so I know my local leisure centre does discounts for the pool…the gym isnt wheelie accessable…which is diabolical considering is council run!! The hour of coffee after sounds ace too…hehe…

Thannks for the advice and link…and I shall certainly look into that…mind is always willing but the body isnt…lol…as you say do what you can according to how you feel on the day…

em

Hi Em I too had ON again Oct and this time the return vision was less than last time.It is always blurry and even more colour washout,not good for a keen gardener but hey ho.I do find that I feel very vunerable now and understand your not knowing where pavements stop etc . I rarely go out on my own now which is daft at 44 and although my good eye means I could drive I really dont feel safe to as judging distances I find hard.Have you got any tips? Do you go to the eye clinic at City Hosp as I find the wait for appts there very long but they always say it to give the ON time to resolve.

From the exercise point of view I think im with you and the mind willing bit…I satisfy my guilt at my laziness by thinking its my good deed to the community by not inflicting my body on people. It wasnt a pretty sight before this crazy leg life started and couldnt be sure what sound effects might cover the music nowadays either…if you get my drift.

Pip

Hi Pip…gosh re getting ON again…I feel very unlucky to get it in left eye, and 4 wks later it starts in right one…left still same. at present.the blurred vison isnt easy either…as you will know. I think they eye hosp are great so far but as you say not easy to get an appt…when I first saw them they found an appt within a week of seeing the eye A&E drs…I am just a littel frustrated that I had a brain mri the following week and now have to wait till 30th march to discuss results…!! Seems a bit if wait and see approach at present…re the ON so know what you mean on that. I too feel more viulnerable due to the eyes but am going out on my powertirke each day with my dogs and to the shops too…cant drive until I have been back to see them…

I would say if you can drive short distances locally see how you go…take it slowly…maybe venture out at 4pm when the roads are quiet or on a sunday? it may take practice re judging distances etc and perhaps see how you get on…

lol re exercise aspect…if you can find something you like it helps either to do at home or at local leisure centre…? Bless you re your leg, I use a wheelchair due to a rta in 94…not confined to it as such but cant walk either and can just about stand for short periods…my balance and co ordination have been bad for a long time…so its safer and uses less energy to get about in the wheelie…!!

em

The practice bit is what scares me…its more target practice…so far a stationary car and bus have been the victims,so I am natrually a bit scared that the next one might be a person.I had only had the car two days and scratched it from front to back!!! I cant even blame it on being new and not used to it which is what I told hubby…he pointed it out that it was the same car and model as the last just a abit newer!!!

I do need to drive though or I will become a hermit. Hope you have a good day.

Pip

Hi Pip…thanks hun…taking it steady today…

I think you are right re driving…little and often…perhaps your hubby or a freind could go out with you intially…or maybe even book a few sneaky refresher driving lessons…with an instructor…? That way you will be with someone impartial,who can take control of the car if needs be…but let you find your way on this…an odd suggestion but thought I would mention it! Also maybe put the L plates on as if you have just passed your test…(the green ones)…??..please dont take that thr wrong way…you can drive you know it…I know it…but as you say you need to work on certain aspects…

lol re car…model etc…yes a hermit is not the road you want to go down on.!! pref a quite road with no pedestrains…and in anycase people should use the crossings etc… and if they dont thats thier fault not yours…lol

Em