New Here!!

[precious_kiki87]

In 2007, I had fallen down the stairs and hit my head against the wall after that I had headaches for 2 months straight. Slowly everyday my eyesight started to get darker and darker. I went to every hospital around the area and all of them kept telling me that I was just having migraines, until one day I completely lost my eyesight. I was so terrified. I had this constant pressure behind my eyes. It was like that for 8 weeks. I had seen a neurologist that had done spinal taps to check the fluids in my spine. The neurologist said that I had something called optic neuropathy or optic neuritis which is inflammation or swelling behind the eyes. He gave me medicine and within a few days my eyesight was back but never really the same. The doctors never really found out why I lost my eyesight. Here it is 2013 and I'm having problems with my eyes again. Ive been wearing glasses on and off for the last few years but more so this last year. I'm having a hard time seeing from my bed to my TV which is just a few feet in front of me. If I don't have them on everything is a blur. I went to the neurologist last weds and he is going to be testing me for MS ( multiple sclerosis) I'm scared ******** that i might have this. I went to a ophthalmologist per the neurologists request and he told me that i have something called retrobulbar neuritis. Which retrobulbar neuritis is optic neuritis without the swelling. Which scares me even more. I have an MRI scheduled for Thursday at 12:45 PM. Everything I read about it keeps pointing me back to MS. I just want to know that I'm not alone that other people have dealt with this. And if so could you please share your story with me??

Thanks
Kellye

[precious_kiki87]

Lol no it wasnt over the end. Like i switched my head and feet spots. my feet were where my head were at and my head where my feet were suppose to be. it was done in the er

[SarahL2491]

ah were you hanging your head over the end or what?  never had that test!

[precious_kiki87]

I sometimes get numbness and tingling in my fingers and my fingers and toes. its not all the time but sometimes. I've gone to the ER quite a few times in the last few months. One test he had me do was lay at the end of the hospital bed and turn my head to the side and when i turned my head to the left i instatnly got sick to my stomach he said my eyes looked like they were going in circles. I had to sit up because i was so sick. that went away for a while, like a few months and now its back. I'm gonna look up those meds right now. My brain right now literally feels like its about to explode. I can't take much more of this. :-(

[Poppy7402]

Kellye

Your head pain sounds very similar to what I get.  Do you have nerve pain in your hands/feet as well?  I too can relate to the nausea, light sensitivity and vertigo.  My light sensitivity is particularly bad with fluoro lights and I'm very worried that its going to cost me my job as I have to work under them.  I look like a drunk at work!!  My nausea and vertigo put me in hospital last year but they gave me Cyclizine and Prochloperazine which helped immensely.  Maybe these would be something you could try.  I think you can buy the Prochloperazine over the counter whereas I think Cyclizine is prescription only.  
Good luck
Poppy

[precious_kiki87]

I don't know what its like to be pain free any more. Besides the stuff with my head and whatnot going on i have severe back pain all the time. 2 tore disks bone spurs degeneration some scoliosis throw in the possible Multiple Scleriosis and ya wonder why im always out of it. The dr i was seeing gave me something called Opana which i guess is Morphine pills which they really dont do anything for me but help me sleep after a while. I took 2 one time to see if it would do anything and it did something and that was make my heart race out of my chest it was like 130/110. So yeah I wont be doing that again. I want one day to be pain free from everything. And i think i will. Most of the pain from my head pain is behind my eyes and in the back part of my head left and right side and and in the front left and right sides. but sometimes its all over. so who knows. Sometimes they feel like migraines other times they don't because i get the light sensitivity, nauteousness, and all that other stuff. Hope to figure out.

[Poppy7402]

The head pain is a killer, any pain is a killer for that matter.  The constant pain is probably what got me down the most in the beginning.  I'm now on Amirol 30 mg at night which seems to help my nerve pain quite a bit.  I still get breakthrough pain towards the end of the day if I've been really busy. If its bad enough, I also take 30-60 mg of Coedine and two Paracetamol tablets as the two apparently work synergestically.    I can't believe how I used to take being pain free for granted.  In fact, pre-being sick I think I took a lot of things for granted!!

Poppy

[precious_kiki87]

Having a doctor that really cares really does make a difference. I have had no energy at all lately. All I've wanted to do lately is try and sleep because my head hurts so bad. Today my head is killing me. Like it feels like someone is squeezing my brains. It hurts so bad i feel like crying. I need to get this stuff figured out because my life has to go on. I can't let whatever I have control me. I have to live life for my baby girl and myself. I am bigger than whatever this is. I thank you all so much for being here for me. Hopefully this doctor figures something out and gets me on the right meds to help with whatever I have. Right now he has me on Topamax until he figures out what I have, which I haven't really noticed a difference yet. Have any of you taken this before? If so, has it worked for you?? I will keep you all informed. My MRI is tomorrow at 12:45 so as soon as I find out I will let everyone know!!


Kellye

[precious_kiki87]

Oh My Goodness. I wouldn't know what to do if I would of went deaf. Losing my eyesight was bad but to lose your hearing would suck also. I've recently been having problems with balance and my vertigo has been off really bad like sometimes i can't even stand up out of bed. I'll bump into people at walmart or even one time i was standing over my purse and literally fell down because I was so dizzy. I thought it was from the medicine I was taking for my back which was a high pain medicine which im no longer taking and im still having the dizzy and vertigo spells. As you said i want a label to soemthing that has been going on with me these last 7 years.

Kellye

[kwarendorf]

Hi Kellye-

It sounds like maybe the third time is the charm, doctor wise speakin'. Having a doctor that actually cares is huge!

None of this stuff is any fun. As Laura said though, MS is not a death sentence. Many of us with MS lead perfectly normal lives. I get up and go to work every day just like most folks :-) The advances in treatments available can make MS a very manageable disease.

I know it looks grim at the moment, but try and take a nice deep breath and relax. You'll get through this and we'll help!

Kyle

[Poppy7402]

Hi Kelleye
I'm in the same boat as you.  :-)  Looks like MS but no official diagnosis yet.  It absolutely *****!!  I didn't present with optic neuritis but instead went deaf temporarily in one ear, in the space of two hours and its been downhill from there.  However, I'm at the point (after six months) where I don't give a damn what I have, I just need a label so I can deal with it.  
Poppy

[precious_kiki87]

This will be the 3rd neurologist I've been to. The first one was when i lost my eye sight. the second was afterwards but all he really did was give me medicine for "tension headaches". He didn't believe me that it was something else other than a tension headache. Yes the medicines worked for a short period of time but eventually they stopped working. I was at the max amount of how much i could take and it wouldn't do anything but make my head hurt more and be more tired the next day. I stopped going to him and was at my daughters allergy doctor and asked her about headaches and told her about my past with what happened and she told me i should probably follow up with my old doctor or she could give me names of new ones which she did. I got into him within i want to say a week or less. The first thing he said was i want to test you for MS. BC of my past history of losing my eyesight and the problems I'm having right now. So hopefully this new neurologist can help me more than the old one i was seeing. I already like this one because he's doing 10x more than the other one did. Thanks so much. It's comforting to know I have people to talk to that are going through this or similar situations.

Kellye

[Lulu54]

Hi Kellye and welcome to a great spot to share your thoughts and worries.  I would guess just about everyone here was initially worried $#$%^% when they thought they might have MS.  

And then some calm settles in and you can begin to learn a bit more about MS.  Take time to research more about MS  and you will begin to understand that this is not a death sentence. Yes, having MS stinks but  with time you can learn to make peace with it.

It sounds like you have a good doctor working with you and going through all the tests in a methodical way.  

I hope the MRI goes well for you and you get answers soon -the worst part of all of this can be just waitng around to find out what you are facing.  Come back and ask all the questions you might have- that's what we're here for.

Laura