Feel like I am getting nowhere fast, I have been unwell for quite sometime. I started loosing my vision in my left eye over a yr ago, I was refered to eye specialist who after examing me siad it was a vascular problem and refered me on. I had tests done with them heart echo bloods and carotid doppler they found that I had narrowing of the arteries , he then was concerned and refered me to a neuro who also is carrying out tests and is saying I am suffering from migraines, I dont have headaches and he has tried me on 4 different medications which give me headaches and make me feel really ill. The neuro has now decided that he wants to do more tests field vision, veps and a lumbar puncture. My mri scan showed narrowing of the arteries in the neck and also said that they could not see the left side of brain clearly I just dont know what is going on the spells of loosing my vision happen about 4 times a day, I am tired all the time and have started getin pains in my joints too. When I lasted visited gp I asked him straight does the neuro think it might be ms he said he is looking towards that direction and that they are trying medication for migraine as a stop gap even though my symptoms are not typical of migraines…Why is it taking so long for it to be sorted, I think Id rather know now than being treated like a giny pig with all this medication. Can anyone give me some advice about what is happening to me.
Many thanks x
I’m really sorry things are taking so long, I suppose from there point of view they want to get things right, however for us it just feels like forever, I was DX 6yrs ago, after going through various tests for 6mths, which I thought was a long time, until I came on here, my sister is going through loads of tests, I think she’s got MS, but like you there taking her through everything, is hard to say whats going on, MS is a very varied condition, affecting everyone differently, hang in there, and take care, Jean x
So sorry to hear they’re taking so long to find out what’s going on, i was officially diagnosed in 2002, i had 2 common symptoms of MS before that,1st symptom was pain and loss of vision which they call optic neuritis basically sent home and rest eye for afew days, after about 1/2 week eye seemed back to normal. carried on with life working etc. then about 3/4 yrs later suffered extremely painful pains in head was 24/7 for six months before they did an MRI scan, they claimed inflamation of the brain and sent me home with betablockers, after few weeks all calmed down, never thought anything of it afterwards kept working 40/60 hrs a week had 2 children. Then in june 2002 my speech went and side paralysed went straight to drs who sent us to hospital. I was admitted in straight away blood tests done all that kind of stuff, then they cudn’t find MRI scans , anyway was in there 1 week and they decided lumber puncture and informed me it was MS another week later it was started to get some body function back and was released home. So annoyed they never told me there was a chance it was MS else i’d have not worked so many hrs and worked part time instead to avoid it if possible.
Hope you get some help and find out whats going on sooner than i did.
take care good luck 
So sorry to hear they’re taking so long to find out what’s going on, i was officially diagnosed in 2002, i had 2 common symptoms of MS before that,1st symptom was pain and loss of vision which they call optic neuritis basically sent home and rest eye for afew days, after about 1/2 week eye seemed back to normal. carried on with life working etc. then about 3/4 yrs later suffered extremely painful pains in head was 24/7 for six months before they did an MRI scan, they claimed inflamation of the brain and sent me home with betablockers, after few weeks all calmed down, never thought anything of it afterwards kept working 40/60 hrs a week had 2 children. Then in june 2002 my speech went and side paralysed went straight to drs who sent us to hospital. I was admitted in straight away blood tests done all that kind of stuff, then they cudn’t find MRI scans , anyway was in there 1 week and they decided lumber puncture and informed me it was MS another week later it was started to get some body function back and was released home. So annoyed they never told me there was a chance it was MS else i’d have not worked so many hrs and worked part time instead to avoid it if possible.
Hope you get some help and find out whats going on sooner than i did.
take care good luck
sorry posted twice hand threw wobbly.
I know it must be very frustrating, but I’m afraid it can take a long time to diagnose neurological conditions because there tend to be no simple tests that point towards one condition and many conditions have very similar symptoms. Basically there are only so many neurological symptoms one person can get, but there are literally hundreds of possible causes and only a small number of tests to try and work out which one it is.
So it’s actually good that this neuro is asking for lots of tests - the more info, the more likely an answer will be found and that it is the right one.
Try and keep an open mind about what’s going on. Your symptoms may be atypical of migraine (although there is a type called “migraine without headache”), but they are also atypical of MS - so it might be one of them, but it could also be neither and turn out to be something completely different. There are even vitamin deficiencies that can cause vision problems and joint pain!
Hang in there!
Karen x
Hi, I read with interest the letters you have and then realised 2 more people were diagnosed the same year as me 2002. Did something happen that year or what? When were you diagnosed?
jan
Hi - sorry if this doesn’t help[ but I have R/R MS and the only nugget of info that I can give you is that in my opinion it isn’t MS. The tests you’ve undergone, in the order you’ve undergone them doesn’t mirror my experiences at all. Mine were different and then quite clearly after 4m they diagnosed MS.
Sorry I can’t be any clearer. Hope you feel as good as can be
Nic xx