Please help anyone?

[jtanner1]

I think I am a newbie, but I don't feel like one, but I do not know where I belong. I am just frustrated and feel like venting to see if anyone else has been through this...

I got optic neuritis 2 years ago. I never got my sight back and am legally blind in that eye. Last year, I began to lose my legs through numbness, spasticity, and clumbiness. I had to use a cane for awhile. I've had strange feelings like closing my eyes and feeling like my waist down is 2 feet to the left of my body. (Still no diagnosis)

These last month or two, I have been diagnosed with new narcolepsy and now I have severe hearing loss in one ear. I'm waiting on a hearing aid. On top of that, I have had the leg pains, the butt cheek pain, headaches, and bladder and bowel issues.

They finally started me on once a month IV steroids at 1000mg. THAT was brutal, and I still have no energy! I vomited and slept all weekend. I'm on 250mg Nuvigil and 10mg 2x a day Ridalin. The doctor said that he is considering chemo for me...but still no diagnosis?? I'm confused and scared! I have one eye and one ear left before I am beyond disabled! And when do I apply for disability?? This is hindering my job! Nothing has gotten better in 2 years, but has slowly gone down hill. Could they have stopped this 2 years ago with meds, or I am I now done? I was told that I am not getting my sight or hearing back...I only have one more body part to lose before I am completely out of a job.
Any advice?

[Echo2099]

I'm sorry to hear you are having such a terrible time. I can't imagine all the worry and stress you must be feeling.

Are you seeing a neurologist? The doctor that said he was considering chemo, did he tell you why? What is his speciality?

If you are not seeing a neurologist that specializes in MS, perhaps your PCP care give you a referral.

I hope you find some answers very soon, and please come by to let us know how you are doing. I know it's not easy, but hang in there!

[FourPaws]

You've gone through a pretty drastic change in a short amount of time. Unfortunately a lot of things are based on having that diagnosis or label but providing you have a supportive doctor you may be able to start working on applying for disability now. That said, they often turn people down the first time. The more stuff you can gather from specialists the better.

Hang in there. At least this is a good group of people and hopefully you can find support here. I wouldn't worry about wondering if you 'qualify' to be here - I've floated in and out of here for four years before I was finally diagnosed a few weeks ago.