MS Symptoms, advice PLEASE!!!

Are you certain you had optic neuritis as a child? That would be pretty uncommon. At any rate, any opthamologist could examine your eyes and see if there is nerve damage there.

Have you told the doctor who is treating you for lupus about the hand clenching, eye problems, and restless legs at night?  Since those are new symptoms, they need to be reported to him. They do occur in some folks with MS, but they can occur for lots of other reasons, too.  Since your MRI's are old, it seems reasonable to request that they be repeated. Perhaps now that you have the new symptoms, the doctor will do that for you.  If not, you could always go to another doctor.

Hi ...You sure seem like you are having a rough time. Try seaching on of the search engines on the internet for nystagmus. It is a rapid eye movement and can vary from person to person. It can have many causes. I do understand the memory loss problem which again can have many causes, stress being just one of them. Chronic illness is a stressor in itself. I think you will find that although optic neuritis usually affects young adults and older people it can affeect young children in both eyes (usually) following a viral infection. Again check the internet for reliable sites looking in partricular for articles on optic neuritis in young children. And definitely go back and see your doctor and let him/her know that you are concerned about some of your symptoms. A new Mri is definitely in order. Good luck and we will all hope to hear back from you. Dale

Keepnitreel

I too am sorry u've felt the need to 'go off' on anyone here. We all do understand u'r sitaution...remember???...we're in the same boat. None of our members...moderators or not...are here for the pure pleasure of it all. Moderators volunteer their time...because we care about those who need answers. Our members are great...that includes u. We all need help and we all help each other as much as we can...but we are not doctors and we can't and won't tell u something we don't know. Sometimes asking questions is meant to get info that we don't have. U'r frustrations are heard and felt by the rest of us only because we share those frustrations. BUT...in telling and re-telling our stories we sometimes leave parts or pieces out due to our having told it so many times. It's an error of assumption or omission or whatever u want to call it...but the end result is that the only reason these questions were asked is to try to help u. We all have prior lives...we 'used to be' other things...now we're all ill and we're all struggling too. Please consider this when u feel u need to 'go off' on any member who is only here to help u. Best wishes to u and i sincerely hope u'll decide to rejoin our group as i feel u may have much to add to our stupid sympathy chats and pity parties.

Keepnitreel -

I didn't reply last night since I have not been dx'd with MS yet. It seems pretty evident it may happen, but haven't heard those words as of yet, but I guess I'll reply now.

I am blind in my right eye. Although my opthamologist (sp?) can't say it was from ON, my Optic Nerve is completely white and 'diseased looking' it was discovered when I was 3, after banging around on the walls and doorways of our home. I've got great pics of the docs trying to 'fix' me with a patch on my good eye, thinking that will strengthen the other eye to work.. Goodness Sakes! It is nice to know that you do have the dx of ON so the docs have something concrete to go back to.

Memory - Yes, I have that. I have worked with the same people for the last 6 years and I'm forgetting their names. I forgot my brothers name all Easter sunday. It was extremely aggravating. I kept calling the ham, meat because I knew what it was, but it kept coming out wrong, so I just stuck with meat. (Maybe that was subliminal... I really would have liked turkey) ;o) I drive the same way to work every day for the last 6 years and over the last year, I'm finding myself every once in a while 1/2 way home and not knowing where I am. I start to panic, pull over or keep driving until I see something that kicks the memory back in. This is just the tip of the iceberg of memory issues!

Hand locking up (clenching?)- I don't know if this is the same as what you are describing as hand clenching, but this, tremors and rt sided numbness is what I initially went to the neuro for. She didn't connect the hand locking up with MS since we had not rec'd my MRI results back yet and just told me I could get botox shots in them if I wanted. :o( My right hand locks up a couple times a month, but not for very long, since I'm not dx'd my neuro has not prescribed anything for it and it's only painful for a few minutes and then it's gone in my case. Over the last couple of months the aching and spasms in my legs, arms and chest have been getting worse and it may be time for me too to get on something. I hate meds, but it looks as though I may have to do something in the next couple of months.

Eyes flicking - I have nystagmus in my blind eye and oscillopsia in my good eye (basically the same thing as nystagmus only adult acute cases). Here's a link to explain the lovely things. http://www.nora.cc/patient_area/balance_illusions_movement.html . I am not on any meds for the oscillopsia, I didn't even think to ask. I don't know if this is the same thing as you describe, however in my case, my eye will start jumping ever so slightly. Just enough to drive you nuts when you are trying to read. I don't notice it as much when I'm not reading, but when it's happening, I can't read anything for a couple hours. I will last a couple days and then go away.

I hope you do come back and read the rest of the posts. I'm sorry you feel the way you do with the forum. I have enjoyed making the friends I have here, you do get sympathy, but along with that sympathy is quite a bit of knowledge and straight forward talk and not to mention everyone elses experiences that you can relate to. I think the sympathy comes from people knowing exactly what you are going through OR saying hey 'did you think of this?' I'm all for getting a dx of NOT MS, however I think all of us need others that are experiencing the same issues just so we know that 'we're not going crazy' like alot of our loved ones or friends think we are (and as you mentioned some doctors) and hope that we can find out what exactly is wrong with us. I too was an extremely healthy person 3 years ago and have been going downhill since... It's not fun, it's confusing on how one that takes good care of their body, physically and nutritionally and still have these types of issues.

Hope this makes sense and I'm not just rambling... Took me about 45 minutes to write, since my eye is jumping around today! :o)
Good Luck.

We are all here for you. I was previously diagnosed with PD and now they think its MS. So I came over to get some much needed info, and advice I really like this board. Thank you. Rye

I'm mad with frustration too. Have the hands clamping but eased greatly on PD drugs. Also vision difficulties. Oh, meant to refer to other things mention=ed and now I have forgotten em!
I too am having a hellova time trying to get doc to 'hear me'.
I have white specs on my brain seen a few years ago but put down to brain trauma such as Rubella as I am a rubella baby.
Ann