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TOPIC: bad eye sight

bad eye sight 12 Apr 2012 21:19 #1733551

  • elmhirst
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I was diagnosed with MG last August and the first signs were my failing eyesight, it had gradually got worst over the last few months and am now struggling a bit ! i just wondered if others have had this problem and how they coped with it really. Will it get worst, will it get better or will it stay the same just bad ????
many thanks mia.

Re: bad eye sight 13 Apr 2012 07:47 #1733555

Do you mean that your lids are dropping down or double vision or something else?
What medication are you on?

Re: bad eye sight 13 Apr 2012 08:17 #1733556

  • CarolO
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Hi,

I have very blurred vision as well as a droopy eyelid and some double vision, but mostly blurred.
When I wake it so blurred I can hardly see and struggle to focus - the medication does help but it never becomes like it was prior to the onset of the mg.

Re: bad eye sight 13 Apr 2012 12:48 #1733568

  • elmhirst
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Hi there I have double vision, blured vision and a droopy eye lid. i am taking prednesolone steriods and some other meds for hyper thyroid, high cholerterol and v low blood pressure. Some days are better than others and some days i feel well like I dont have MG. suppose this is all part of it though.

Re: bad eye sight 13 Apr 2012 13:03 #1733569

Did they try you with Mestinon at all? Or is it contraindicated for the other things you have?
I did a little research last year when I first got diagnosed and found what is called a back door un-known help to GP's for vision. They recommended Sudafed tablets to help with Double vision and as these are also a vasoconstrictor, they will help to raise your Blood pressure a little as well. It may be worth trying some for say a month to see. GP should be able to prescribe them for you free under the quallification of myasthenia being one of those conditions. If you do not have a card yet apply for one via on line prescription help and then keep a receipt of all scripts/drugs issued before card arrives but after you apply. That way you can get charges of £7.65 refunded. The cholesterol tablets if a statin may not be 100% suitable as they can cause leg weakness and sometimes exacerbate the condition, so you need to talk to GP about that. The steroids should be having some effect by now. Have they upped the dose yet? I am on 50mg per day at minute, but if another drug begins to kick in, I am hoping that I will be able to taper down. Although I am advising you to try here, do discuss fully with your neurologist and GP, even if only by phone (neuro) and a GP visit. Sincerely hoping that some of this may help.
The following user(s) said Thank You: elmhirst

Re: bad eye sight 13 Apr 2012 15:43 #1733571

  • CarolO
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Which Sudafed tablets are they? I have a terrible blocked nose and regularly get sinus infections. I also according to my husband snore like a pig - very nice I know. I was wondering if I could speak to my GP about Sudafed and if it would help a few of the problems I have - kill two birds with one stone so to speak. He may be reluctant to prescribe as I have high blood pressure due to the steroids and the mycophenolate mofetil but I can ask.

I have had the sleep test but was just borderline - but to be honest I didn't sleep well with all the wires and things stuck up my nose like I would on a normal night.

Re: bad eye sight 13 Apr 2012 16:44 #1733574

  • elmhirst
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Thank you so much for the info, you have said more to me in your text than my GP has ever done !!!Actually, my GP doesn't know much about MG, and spent a good 3 months last year telling me i do not have MG as it is quite rare !! But by reading this web site i see that its not as rare as some may think and am not as alone as I first thought.
I also suffer from COPD which is exsasberated by MG, I'm on a few inhalers and with the prednisolone, i'm on enough steriods. My eyesight is now quite poor and to think that this time last year i didn't even wear glassess its a bit upsetting to say the least. Anyway i'm ok, and am learning to live with this strange illness,My legs ache and dont know weather its the statins that are causing it or the MG ???

Re: bad eye sight 13 Apr 2012 19:41 #1733578

They are ones that come in a tub from GP, not the over counter ones. 60mg type Pseudoephedrine Hydrochloride. Max dose 60mg x 4 a day. But there may be other sizes you could take or just take less of them per day and see if you get an improvement. So long as your GP keeps an eye on your BP, it may be OK. Definitely have a chat with them. They do seem to keep my nose clear of gunk and being blocked up.
One thing that might help with high BP is cutting out all sugar (white refined type) and lowering the amount of actual carbohydrates in diet. I changed the ratio of protein in my diet from one portion of proteins : 2 carbs to 1 of carbs - 2 protein. In effect I doubled protein content of main meals and halved carb content of same. This has helped me to maintain weight loss which has in turn helped lower BP over all. I am satisfied for longer periods of time as I do not get sugar(carb) cravings so much now. I also eat bananas and tomatos quite a bit as they are foods rich in potassium and often eat nuts as they are a good source of other nutrients. My GP is amazed that I am losing weight on steroid dose of 50mg per day.
The following user(s) said Thank You: elmhirst

Re: bad eye sight 13 Apr 2012 19:45 #1733579

Did your legs ache before MG diagnosed at all? If not then perhaps it is the MG, very difficult to tell. Could be worth asking about it, probably better with Neurologist than GP.
Perhaps worth asking for a break from the statins for a while and see if things improve or not?

Re: bad eye sight 13 Apr 2012 21:00 #1733580

  • CarolO
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Thanks, I will see my GP and try your diet suggestion.

Re: bad eye sight 14 Apr 2012 07:16 #1733583

Let us know if things get a bit better. I think with this illness we each have to find what suits us, while still being treated and hopefully getting back to a near "normal" life.

Re: bad eye sight 14 Apr 2012 10:35 #1733589

  • dusty
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Hi Mia,

I have sero-negative ocular myasthenia - and because I have other health problems - I have chosen not to take steroids (or any other immuno-suppressants) for my eye symptoms...which are 'severe', according to my neuro. I have constant crazy double vision and a droopy eyelid.

I have coped with my symptoms for over 4 years now - I patch a lens of my specs or wear an occluding soft contact lens for the double vision and have a ptosis crutch (Lundie Loops, which are detailed elsewhere on this website) for my droopy eyelid. I also have two pairs of bi-focal specs - one prescription for the mornings to mid afternoons and the other pair, with a different prescription, for the late afternoon and evenings when my un-patched eye cannot focus as well.

Not much consolation, I know, but I too had always had good eyesight and didn't start wearing glasses until my late 40s - just for watching the telly (didn't need them for reading) - so I sympathise, I know what a shock it is to suddenly find yourself with sight difficulties. The thing I found difficult is that when you have to patch an eye due to double vision your depth perception goes to pot - still sometimes have difficulties with that, e.g. misjudge kerbs and steps and think I'm pouring out a drink from a bottle into a glass, but find I've missed the glass altogether!

Hopefully though, the steroids will kick in and eventually help you.

All the best,

Dusty
Last Edit: 14 Apr 2012 10:45 by dusty.
The following user(s) said Thank You: elmhirst

Re: bad eye sight 14 Apr 2012 13:31 #1733596

  • elmhirst
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my legs have omly been acheing for a few months so as you said, i assume it is the MG and not the statins, I'v been on the statins for 4 years now, i suddenly develoved high cholestrol after being in hosp for breathing difficulties and ended up in ITU in a coma after i stopped breathing.It was a terrible experiance and it happened again 2 years ago but was not ventolated that time.As i suffer from COPD (we think) but after reading all the info on MG i now think its related and not COPD as i have never suffered with anything like this before.My health has been up and down for a while now and I think as i'v finally been diagnosed with something(MG)i can start putting the jig-saw together at last ! sounds crazy but it does feels good to know i have a name to what is actually wrong with me .All the times i have tripped up pavements and pored drinks over the counter and been seeing double and blured makes me quite happy to know I'm not mad .

Re: bad eye sight 14 Apr 2012 15:36 #1733598

You've definitely been through it with the COPD thing. And I think you may well be right about it being MG related (the legs and one or 2 other things). It is nice knowing one is not mad though is it not? It is now just over a year since I had the eye troubles start, which I thought was related to getting varifocal lenses of all things. Then I thought it was to do with a fen blow we had. Finally things got so bad I had to stop work as a bus driver and go sick. Had no choice. Finally got blood test confirming in Early Oct last year. Sero positive for antibodies, so simple to diagnose, so my case was easy compared to some who have posted here and are still waiting for confirmation. If you wish to befriend me, click on my name and it should I think take you to a screen which will tell you how. Not done one for a while, but that way we can talk without everyone getting involved if you wish. Off to work now as I am back to driving 2 days per week for a total of 12 hours work. All I can manage now. Whacks me out doing that. Used to do well over 45 hours years back. Only about 5 hours driving on the 2 shifts. Not allowed to do more due to hours and money restriction rules of ESA contributions. Am on the assessment rate, but it should go up to proper rate after approx 13 weeks which is about 26 May I think? We will see.

Re: bad eye sight 14 Apr 2012 15:54 #1733600

  • deblems59
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Hey There I have bad eyesight too It`s kinda hard to explain really.Ihave Lambert Eaton Myasthenic Syndrome one of the first signs was blurry vision and I hadn`t been at the vino.. Now it`s the medication thats giving me the blurred vision as it is listed as one of the side effects. We can`t bloody win here can we haha. Someone up there is just taking advantage of our good nature.Hang in there

Re: bad eye sight 14 Apr 2012 16:17 #1733603

  • kate38
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Hi

Have you asked your Gp to be referred to a neurologist, or even better, a specialist MG neurologist? GP's may only come across MG once in their whole practicing career and know very little about it. Some neurologists know a lot more, but a specialist in MG is what you really need. I think you can find out this information on this website. The MGA also fund Specialist Nurses who can help too. Use them, they are brilliant! Hope this helps.

Re: bad eye sight 14 Apr 2012 18:28 #1733613

  • dusty
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Now it`s the medication thats giving me the blurred vision as it is listed as one of the side effects.


I was shocked by that, i.e. Mestinon raises my droopy a little bit, but does nothing perceivable to help improve my double vision, in fact my eyesight gets blurrier. (Have tried all sorts of doses and timings of doses - same thing still happens )

Re: bad eye sight 14 Apr 2012 22:31 #1733617

  • elmhirst
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I wonder....do any of you know how wonderfull this is for me.. to here all you lovely people talking about this stupid illness MG. its like a breath of fresh air for me !!I have learnt so much from you all this last week than i have ever learnt from all the doctors i have seen in the last 6 months !!Thank you Thank you to you all. I feel i have made some 'real'friends on this web site....And even as I sit here and write this I am in pain and I can hardly see but i am happy to know that at last I can confide and talk to people who understand what i am going through.lovely truth at last.xx

Re: bad eye sight 08 May 2012 11:00 #1733838

  • yaz
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often when you have mg it is difficult to separate its symptoms from those of other conditions.

i had problems with extreme tiredness , aching muscels and blurred vision. i thought it was the mg flaring up. my friend who had a blood sugar montitor decided to check my levels and found they were 18mmols. got some treatment and those symptoms went away.
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