I am assuming these visual problems have occurred recently and after the work up you describe. Is this correct? If it is, you need an evaluation by an ophthalmologist ASAP. You are describing some significantly concerning symptoms that may be a problem with your optic nerve. Try to get it done immediately, or if your vision is deteriorating, go to the ER and they will get it done. When was your MRI? If it was more than 3 months ago, you may need another.
If I don't have the story quite right, would you post with more info on what happened when, and how long each symptom lasted.? Thanks, Quix
quix, thank you so much for your response.
I also feel that the symptoms are worrying but so far medics don't seem to be concerned. the visual symptoms started in September 2006 (and have been continuous ever since) after a few weeks of blurred vision and trouble focussing. i went to see my optician at the time but they could not find any problems and then in Dec I had the MRI and VEP tests done, which have both come back normal, as there was suggestion of MS by my consultant. I am seeing a rheumotologist as I was initially diagnosed with Chronic Fatigue Syndrome. To be honest there has been no deteroration at all in my general vision, just very weird phenomena. As all tests have come back clear I presume that there is nothing too untoward to worry about but in the back of mind i know that what is happening is far from normal.
I saw a neurologist last week, who said he had never heard of anything like it, he checked my eyes and said he couldn't see anything. in fact he told me that i was being over sensitive, and suggested that I was making a mountain out of a mole hill as i am worried about my health due to all the other symptoms I am experiencing. to be honest he didn't inspire much faith, he offered no explanation as to the cause of my symptoms apart from saying he didn't think I had MS. I think i have to wait for the LP now. Do you think that sufficient tests have been done to ascertain whether there is a problem with the optic nerve?
As for the rest of my symptoms they started in jan 2006 and slowly thoughout this last year and a half I keep getting new ones. or have weird symptom flares and new ones will appear for a short time and then disappear. I have read quite a lot about CFS and MS and some of my symptoms match both and some of symptoms match neither. I am confused but i think aware that science still doesn't have all the answers, maybe i am one of those who will never get an answer.
it really is very kind of you to respond to my post, and after posting last night I read some of the previous posts including your story and many of your responses. you are very compassionate and inspiring. i wish there were more medics out there who took as much time over patients concerns, instead of fobbing us off. I am sure you were an amazing pediatrician. wishing you strength with your MS.
sorry forgot to say. from blood tests done only problem was deficient in B12, no problem with intrinsic factor. i had three injections of b12 in oct 2006. just had another test done, it was normal but very low, 191 only. i have read about research from kings college that shows a large number of ms patients are B12 deficient. the neuro i saw last week said i have to have injections every three months. this seems weird to me if i have no problems with intrinsic. i eat a healthy balanced diet and take a daily multivitamin that has b12 in it. i am vegetarian but i eat dairy, eggs and foods with b12 added.
Would you mind listing your symptoms, how they came on, and how long they have lasted. Just to give a better overall idea of what you're going through. You refer to weird symptoms, but you don't describe them.
Also, in the US an "optician" is just someone who fits eyeglasses, just the frames not the vision prescriptions. They are rather like fashion consultants. They know very little about eye diseases. Then we have optometrists who measure eyesight (and who get to be called "doctor"!) who are trained in some eye diagnostics, but to whom I would never take an eye complaint! And then there are the MD's called ophthalmologists. Who did you see?
I would think that a normal fundoscopic exam by a neurologist and a normal VEP would rule out optic neuritis (the classic visual problem in MS), but I would only be happy hearing that you had a thorough ophthalmologic exam. It is possible that your visual symptoms are arrising from the visual cortex of your brain.
Do you mind my inquisitiveness? And, thank you for your kind comments. They do make me feel good about my time here. Quix
also forgot, since two months ago i have a vibrations thoughout my torso and legs. comes and goes but have it for days, then nothing for days.
Thank you so much for your response, its really kind of you and helps so much. I have had so many symptoms in the last year. It all started after the pneumonia /lung abcess / sceptecemia. Six weeks after the pneumonia I wasn't getting rid of the symptoms i'm going to describe and kept returning to my general DR every two weeks.
Jan - July 2006 To begin the onset was extreme fatigue, sleeping alot but it didn't relieve it. I was also often very dizzy and disoriented, nauseous,sensitive to sirens, muscle aches, walking was extremely challening and difficult (now I still can only walk slowly but am more fluid, i have been walking almost everyday for a year) and at the time i told my Dr that i felt as though I was losing my intelligence. I speak three languages and i lost an awul lot of two of them. I was mentally exhausted. Headaches, short sharp pains mainly in the front but also all over skull. Slowly more symptoms began to appear and I started with really quite severe shooting pains in my legs, hands and feet, blurred vision. Also something very weird - lunging on the bus, by that i mean i cannot stop myself from being thrown forward by the braking of a bus. its almost always as if we have braked suddenly and i'm thrown forward. no one else on the bus moves, not even old people. that subsided for a while and then it started again and now its constant. i've never had an explanation for that either and i always ask, as its weird. i also had heart palpitations (still get them on and off but not as bad), which started three months before the onset of pneumonia. I've had and ECG which came back normal. immediately after the pneumonia all my muscles were much weaker, i was very strong before and have calf muscles to rival a footballers. I find it very difficult to push / pull heavy doors, and any gradient slows me down even further. If i go on an exercise bike, i struggle to keep it moving even on its lowest setting. This hasn't improved with all the walking I have done. During my "better times" I walk at least forty minutes a day. I also suffer from some joint pain, but was diagnosed with chrondomalchia in my knees age 12, and am not sure if its related. my muscles started twitching, my thighs, upper arms and back mainly. again i have this for days and then it will stop for a few then start again.
i stayed with these symptoms for a couple of months of varying degrees depending on the day / week / month. i read a lot about chronic fatigue and how to get over it and worked really hard at pacing, slowly and gently walking to keep my muscles from deconditioning and keeping a diary to see if i could find any triggers. i couldn't identify any.
August - September i had a very bad flare of symptoms and the fatigue was off the chart, drowsy all the time, bad blurred vision and the most horrible pains, it was as if someone was prickling me all over with needles. - legs, arms, hands, feet, face and breasts. it was horrid and lasted about a week. I now still get those pains daily, but not so severe. i also get them sometimes after a hot shower (and have had taht happen since i was a teenager but without other symptoms). i also had a severe cognitive issue and was unable to read. I could not process the information, i'd read and it just would not get through, after a couple of weeks it lessened but for more than six months I could only read very simple language. It took over a week to fill out a very simple form. I have taught English for eight years. vision problems started. i went to an opthamologist as requested by Dr, here in uk we call it the opticians, sorry. he referred me back to my Dr.
Nov - Dec not too bad but still fatigue, pain, some dizziness, nausea. had some of the "best" weeks all year. i started to pee a lot, going really often. i noted it once and i went 17 times in a day. it subsided for a while but now i'm pretty much going to the toilet a lot. it fluctuates but have bad periods. i started to get quite severe appetite loss, which never happens to me. i'm a comfort eater, the last time i lost weight before now was when i was 21, i'm now 35 and i have just slowly gained weight over the years. i have now lost 17 kilos (sorry don't know in pounds) since Nov, but no appetite loss or weight loss in the last two months.
jan - march. very bad flare again. extreme fatigue, dizziness, nausea, lost cognitive capability again and also a severe loss of equilibrium which lasted about a week. it came on very suddenly and i have never expereinced this before, as i put my foot down it was if the floor moved down too. i was also shaking quite severely maybe from the fright of the severity, i had to hold on to the walls to get up to bed - the fatigue was very very bad. everything looked weird and off kilter. i should have gone to Er but i was alone, didn't want to disturb my mum, so being the stupid coper that i am thought i'll just wait and see if it wears off. i had a dreadful night and hardly slept and had to keep getting up to pee, but so difficult to walk. by the morning it was little better but still not right. i called for an appointment to see my Dr couldn't get one for five days. it slowly improved, still weird but much better by the time i saw him. next time i will go straight to ER. i also developed electric shock pains on the bottom of my feet, hands and face, again i suffer from them daily. i also had the severe burning pain during this time. i always get very emotional during these flares.
the last couple of months have been okish just tired, pain, headaches and a little dizziness / nausea. at least i can function during these times and i really appreciate them when they come. i know there are so many people who don't get relief, and i think you're one of them. a wonderful saying " Courage is the little voice in the corner that says I will try again tomorrow, not the roaring lion. " i feel you have that spirit quix.
i have had loads of blood work done and everytime i go back to see my consultant they always take blood. so far nothing has been found apart from the B12 deficiency. i've found something very similar to my visual symptoms in the opthatmology pages here - its called visual snow and may be caused by autoimmune / amiltryptiline (bad spelling). i am on 25mg dosulepin at night for pain. i refused to take more because it makes you tired and that's the last thing i need. ( if your fatigue is anything like mine i feel for you, i find it one of the worst symptoms to deal with as it stops me from doing so much. ) someone on the forum describes also the blue lights that i see but most just have the "snow." there still seems to be very little understanding of it. i suppose i won't know if it is all part of parcel or a red herring. but i keep an eye on it and if anything gets worse then i shall go straight to ER.
sorry its so long but so much has happened in the last 18 months, i sometimes don't believe it has and do question it, luckily i kept a diary. take care and hope to hear from you when you are well enough to handle this major post.
thank you so much.