Any ideas? Desperate for answers!

[annanorthman]

Hi, this is my first post and I'm posting in desperation! I'm 38 years old and have for the past 19 years been diagnosed with multiple conditions (over 20) and multiple conflicting diagnosis. It seems that every few months I get more symptoms and a new diagnosis of a new condition, and the current suspicion is that I may optic neuritis and possibly MS. Currently I have a swollen temporal artery which the neurologist tells me is Fibromyalgia (diagnosed 10 years ago), i have nystagmus, constant eye pain first in the left eye and now in the right also. I can't go into any kind of light without pain in my eyes,but bright light makes me fall to my knees in agony and my head feels like it's exploding.. I have snowy vision (quite bad) and if i look at anything white or light colored it fills in with snow vision and becomes grey. If I use my left eye only, then i lose my central vision completely for a few seconds and it switches between grey and black and my peripheral vision looks like black and rainbow sparkles . I have also had a sensation that my left eye is harder to control than my right and needs more effort to move it, I've also had a rubber band snapping sensation in my left eye. My eye glasses prescription has doubled in the past few months also. Does this sound like optic neuritis or any other condition to anyone? Any replies would be much appreciated, thanks.

[rendean]

Dear anna,

Below are two articles regarding your condition. The 2nd article states you should be seen and treated by an opthamalogist.

Your neuro's idea to take an aspirin has some validity in that in will help thin the blood and possibly prevent another mini stroke.

Let me know if these help. If not I will search further for you.
Ren



http://ezinearticles.com/?How-to-Differentiate-Polymyalgia-Rheumatica-From-Temporal-Arteritis-Or-Fibromyalgia&id=2574503

http://www.cidpusa.org/temporalarteritis.html

[annanorthman]

My family doctor said I had Temporal Arteritis, and I've also been diagnosed with a mini stroke before, but the neurologist didn't want to examine me and said that Fibromyalgia causes the temporal artery to swell! I've never heard this and can't seem to find any evidence to support this so I'm back to my family doctor on Monday morning. The neurologist also said that he disagreed that I'd had a mini stroke, even though his colleague said I had and the scan apparently showed evidence of something - although I'm not sure what. They've arranged for me to have an EEG but I have to wait four weeks for it, and I now have tunnel vision when I don't have loss of central vision (peripheral vision remains) I'm basically of the opinion that no doctor knows!!!! the neurologist also won't issue me with any medication and told me to go home and take an aspirin!!!

[rendean]

Hi, while reading your post, your symptoms reminded me of symptoms my father had. He was initially diagnosed with polymyalgia rheumatica then fibro. They did consider temporal or giant cell arteritis.

This usually occurs in older people but you have fibro so it may fit. My intent is not to frighten you  but to share an experience that I witnessed myself.

Below is a link from Medline on this:http://www.nlm.nih.gov/medlineplus/ency/article/000448.htm

Remember this is not an attempt to diagnose you, sharing a personal experience.

Please keep us updated!!

Ren

[maestro1959]

I am so sorry you are gong through this. I am afraid I can not give you any answers, as this is totally out the range of anything I have experienced with my MS.  That being said, I know you have come to the right place, though.

There are many on this forum that have the knowledge to help you find the information you are needing.  I know it is easy to feel totally desperate at times, especially when you have been going these things for an extended length of time.  Hold on, though.  Do not let whatever is attacking you physically defeat you.

You can find courage and strength in the sheer camaraderie of this forum.

Beth

[Lulu54]

Hi Annanorthman,  I have no personal experience with optic neuritis but there are others here who should be around later and able to help.  The time difference between here in the states and those of you in the UK often causes a lag in reply time.

I sure hope it isn't MS - keeps us in mind if you have other questions.

Lulu