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whats going on?!

Hi everyone, il start by appologising for the essay im about to write… Back in march i was experiencing double vision…it got that bad that i went to see my gp, who told me it was just an inner ear infection and sent me away with antibiotics…i didnt take them as i wasnt convinced i had an infection…3 weeks later i went completley blind in my right eye over night! I was terrified and went to a&e straight away…they done a visual fields test and the eye doc told me i had severe swelling on my optic nerve and he said he would refer me for an mri, however after a few weeks i hadnt heard anything so i called the mri unit and they had no record of a referal! I went back to my gp who refered me to a different opthermologist and finally i was refered for an mri and have an appointment this wednesday…however while this was qll going on my sight had returned almost 60% but other symptoms had occured, my right arm felt constantly numb and heavy to the point i coulnd sleep, my left arm started to have regular tremours, i felt vibrations in my lower back and legs, i feel constantly tired, have severe pain in my shoulders and just feel ‘ill’ my gp has now said ms is a big possibility. I dont know where to turn…iv had to practically beg my docs for an answer i feel like im going mad…has anyone else experienced anything similar? Thanks, kait x

Hi Kait, it is all a bit overwhelming isn’t it?

There are many conditions that can give the same symptoms and it usually takes lots of tests and appointments to sort it out but your GP has suspected MS. From what little I know it does all seem to fit in with MS.

I had optic neuritis (ON) that is inflamation of an optic nerve 2 years ago and had no other symptoms until this year. I am not diagnosed with MS, but because, ON is a common presenting symptom of MS and because my other symptoms could be MS related (fatigue, weak leg and arm and balance problems, also some numbness, itching and prickling) my GP suspects MS and referred me to a neurologist (neuro). Who I saw yesterday and thinks it is MS and is arranging an MRI scan to look for lesions. Lesions are where the myelin is damaged. Myelin is a fatty substance that insulates the nerves electrically. Keeping the signals from leaking to other nerves causing crossed signals and causing less signal getting to the actual destination. The damage is caused by inflamation (that causes swelling, re. your optic nerve)

Optic neuritis (ON) (inflamed optic nerve) is quite a comon presenting (first) symptom. of MS and sudden (acute) ON does usually improved substantially in about a month and often continues to improve for 12 to 18 months so that sight is usually mostly recovered. You seem to be on the right path. But there is usually some loss of colour vision and contrast and some resolution is lost so the patient can’t quite get as far down an optomertrist eye test chart as they could (even with glasses if usually needed). ON type symptoms can be caused by a number things but in ON the the immune system attacks the myelin so less signal gets from the light receptors in retina to the brain to be processed to become what we see.

Your other symptoms are possibly the result of the same type of immune attack in different parts of the central nervous system (CNS) messing up nerve signals to do with other parts of the body. From what I understand,of Multiple Sclerosis. Multiple, in that there is more than one, and sclerosis meaning scars on nerve tissue. The scars are also called lesions and placques (and there are probably more words that get used). The best tool we have to for finding lesions when they cannot be seen is MRI,hence the reliance on MRI scans in investigation in MS and similar conditions. Most nerves are well inside the body. The end the optic nerve leaving the back of the eye is probably the only bit of the nerve that can be seen directly (except my autopsy). Specialist devices to look at the back of the eye are needed to see the end of the optic nerve, even so. Even the hand held opthalmascopes aren’t usually good enogh.

When ON types symptoms (loss of vision) occurs by itself it is investigated by on othalmologist (eye specialist) who will look to find the reason for the loss, possibilities includes glaucoma (build up of pressure in the eye that causes damge), damage to the retina and inflammation of the optic nerve( demylination) among other things. The optic nerve can become inflamed where the nerves leave the back of the eye (the optic disc) or somewhere between the eye and the brain. When the optic disc is inflammed (swollen) it can be seen (as I’ve already written, sorry for the repetion) with the right equpiment used by opthalmogists and sometimes neurologists. A swollen optic disc is called papilitis. When the inflamation is between the eye and the brain it is called retro-bulbar (behind the eye ball) and isn’t visible. It can’t be seen by looking at the back of the eye. A detailed MRI scan ot he eye and back along the optic nerves can show lesions on that nerve. If the the disc is swollen an MRI scan is often not done (it wasn’t for me) but in your case they could be checking for lesions between the eye and brain. Another reason for an MRI scan at the time of ON could be to see if other parts of the CNS are demylinated too (to check for other signs of MS) but usual NHS practice is not to look for any other lesions if there are no other MS like symptoms. ON is often the only MS type symptom a patient has (about 50% of patients with ON will have no other symptoms).

MS, dymyelination of nerves of the CNS is within the expertise of neurologists (neuro ) and for investigations of nerve problems a neuro will take on the problem. A diagosis of MS can only made by a neurologist - within the NHS at least. You wrote that your other symptoms appeared while the opthalmologist was arranging an MRI scan and it sounds as if a neuro is not involved yet. I would check with you GP. It may well be that the MRI scan arranged by the othalmologist isn’t suitable for the neuro to use. So you may well have trip to a neuro and another MRI.

Your GP is the cordinator of your health care, the gateway (and gatekeeper) for access to specailists so I would ask you GP about referral to a neuro The GP has said that MS is a possibility and only a neuro can investigate. MS is rare, so GPs refer to specialists.

Specalists can refer patients to a more appropriate specailist so your opthamologist might refer you to a neuro (with the GP not having to do that) but your opthamologists don’t sound well co-ordinated at the moment.

I guess having the diagnosis of ON made at A&E may lead to some confusion. An emergency Dr rather than a full specialist. (Appropriate at the time in case it had been an emergency, e.g. a detached retina.) The second opthamologist was then picking up from the first so problably was confused. So I’d check with your GP. I think a neuro will have to co-ordinate the MS matters so your GP should refer you to one.

You appologised for writing a lot - and look how much I’ve written! I hope it helps and isn’t to long to get through. Other, more knowlegable, and experienced people will will probably answer later. (If they have’t while I’ve been writting)

And I’m sorry it takes MS type circumstances to join the forum but welcome! Have a look around on this site and the mstrust web site there is more information.

It is also very scary and does mean dealing with symptoms but it isn’t he end. People still manage to have good life with MS. I think your prognosis will probably be on the good side. With ON as the first symptom and you being female.

Good luck and I hope the Drs give you some answers soon.

Jon (hugs).

Hi Kait, and welcome to the site

An inner ear infection causing double vision??? Well, that’s something I would never have guessed possible, lol!

Optic neuritis is certainly one of the classic early signs of MS, but it (and your other symptoms) can occur in other conditions too (including vitamin B12 deficiency, which can be treated) so try and keep an open mind about what’s going on.

The thing to do is to get a referral to a neurologist (preferably an MS specialist as they will know more about MS and MS mimics) and not wait for the MRI results and seeing the ophthalmologist again. You can get the name of a good MS specialist in your area by using the “Near me” function on this site - see the white boxes towards the top of the screen. GPs are not allowed to diagnose MS, so the sooner you get to see a neurologist, the sooner you will get some proper answers.

In the meantime, try and hold onto the fact that about 50% of people who have a single MS-like attack never have another one - so if this is one, you have a good chance of never having another.

Hang in there. Rest lots and be kind to yourself (no overdoing things, no stress(!), leave the housework, etc).

I hope you get some answers soon.

Karen x

Hi john, Thankyou for the information…its been very helpful since my doctor didnt offer any! I have a referal for a neurologist but the waiting list is very long so my appt isnt until october… In the meantime i have my mri tomorrow and two follow up appts with my opthamologist in early september, im hoping its something simple and gets sorted soon…i know it sounds selfish but im desperate to get back to how i was…i can no longer ride or handle my horses (my beautiful oap mare della and my very boistrous stallion ronnie) it may sound silly but they are my therapy of general life and not being able to do normal things with them is driving me mad! Its very fraustrating. But im thankful for this site…even if i dont have ms…this site is somewhat of a comfort at the moment. Kait x

MaHi karen, How long do ms like attacts last? Is there any set length of time or does it vary? Iv been resting alot but it makes me feel lazy and me and my partner are on the verge of splitting after numerous rows about day to day running of the house…he just doesnt understand/believe how tired i feel…he just thinks im lazy…and has even suggested its all in my head…but surely i couldnt imagine going blind ect…?! Hopefully tho i will soon get answers or atleast move forward towards an answer. Thankyou for your advice il keep u updated…my doctor said my mri results will take roughly ten days so il update when i get them, Kait x

First of all, point your husband in my direction so I can give him a slap! There is absolutely NO way that anyone can think their optic nerve into swelling. No way, no how, NEVER! (If you’re reading this, Kait’s husband, you really can believe me - I’m a neuroscientist who just happened to specialise in vision for her PhD.)

Second, probably the only non-meds things that do anyone any good while they are relapsing is lots and lots of rest as well as avoiding stress(!), NOT doing the housework (and not feeling guilty about it!), staying cool and well hydrated and doing anything else that will allow your body to have as much time and resources to focus on getting you better. Let the guilt go. Order take out. Hire a cleaner if you can, but otherwise learn to either ignore or love dust - it’s so not important. Attacks can last anything from a day to many months and pushing yourself will only make it last longer. So prioritise all your tasks, only do the absolutely essential things, pace yourself while you do them and stop to rest before you exhaust yourself.

Your husband may be in denial or he may simply not understand. It’s really hard to accept that loved ones are sick, but somehow or other you are going to have to get him to listen because you need his support. It is hard for people to understand a lot of neurological symptoms because they are invisible and almost impossible to imagine. For example, lots of people think our tiredness is like their tiredness, but it’s about as far removed from normal people’s tiredness as a Formula 1 racing car is from a Robin Reliant. Trying to get someone to understand that is horribly difficult though :frowning: Is there someone that your husband would listen to who you can enrol in explaining things to him perhaps? Could you get him to read this website? Can you get a friend to help out around the house while you can’t?

It’s a very stressful time for you both; I hope you can work something out so you can stop the arguments.

Karen x

I hope your MRI went well though I guess you won’t have results for a couple weeks.

I’m glad you have an apt for a neuro - but another blasted wait!

I hope it turns out to be something simple.It is hard not being able to do what you used to do. Epecially the enjoyable things, so it must be hard not being able to work with your horses. I used do working trials with my dog and though he’s now retired I was planning to start with a youngster - but that plan is now shelved. I certainly didn’t think myself into going blind in one eye, or fatigue and mobility problems either!

Best wishes,

Jon.