New here (Waiting for Diagnosis for the second time)

[Jotunheim]

Hello there MS world,
I'm currently going through my second hospital visit and series of MS testing. Back 2½-3 years ago, I got an ON and was run through the full gamut of tests (MRI, Lumbar, and Evoked Potential) all of which came out clean. I've had some minor things since that my doctor has not really thought of as potential MS attacks.
This last monday, I then woke up unable to feel heat or cold in my left leg and the lower half of my left torso (Also one instance of a jolt of pain shooting from lower back down through the leg). I was pretty devastated, as I had hoped so dearly to escape the MS diagnosis.
I am both an illustrator and a muscician, and I'm pretty down about the prospect of losing the ability to do both of those things either through further optical nerve inflamations in my other eye, or through damage to my right arm/hand.
Due to the relative "mildness" of my symptoms (No reduced strength. Only very partial reduced general sensation in the area) the hospital has decided that they would prefer to do my tests in an ambulatory fashion, so that I have to wait a few weeks for my tests, but with my ON and now this leg thing, I just can't really think what else it would be other than MS. The doctors seem to kinda refuse saying "it's probably MS" on principle, but few of them have been able to offer an alternative potential diagnosis.
I know that treatment is better than it has ever been, and that some people manage to not get too horribly affected by their MS, but I'm still not sure what to do with myself. Half the time I feel kinda resigned that this'll just be my life, and half the time I'm a mess. I keep picturing myself as a vegitable, being unable to do anything, and being a burden on my loved ones. I'm just pretty lost right now.

Thanks for reading,
Lars.

[MSbrother]

It will not be easy but, Your Loved Ones Will Love You Back!

[MSbrother]

In the beginning there was some question about whether or not my brother had MS but his symptoms are exactly like what I'v ben reading about on this forum.

I hope you pull through this sadness your feeling.

[lavenderteawithme_33]

Lars,

wow....you have been through a lot and are very stressed out. I wanted to wish you peace during all your tests and to remember to take a deep breath. I will be thinking of you and sending a hug your way. Please keep us up to date with how you are.
Take care..........lavenderteawithme

[MarySunshine]

It may or may not be MS...but don't sweat it. MS has such a strong community, that you will always have support.

My cousin has MS, also, and retired a couple years ago from teaching (was a college music professor/conductor) and he was 70 when he retired. He is in a motorized chair, but has hand controls on everything & drives (drove me to a doctor's appt).

You can do anything, you just have to believe.

[Jotunheim]

I think my main problem is that I just don't know what else it could be. In my mind, it seems pretty definite, with the two instances of attack-like symptoms.

[MarySunshine]

I know it's hard to deal with doctors who can easily write it off. I've been diagnosed, then undiagnosed and now recently re-diagnosed (I think definitely this time). It took 9 years. MRI's showed some small areas, but I have mostly spinal lesions...and Steroids make me severely manic (i didn't know what that was when I was manic) and it made it difficult for docs to take me seriously. Plus, I found that when I've told docs that I was sure of something (like passing a kidney stone), they write it off, look somewhere else (personal) and then don't apologize when the CT shows kidney stones.

There are a ton of things that resemble MS, even ones that have ON. (Although, I've recently learned that my retina OCT pointed to MS and that's a good clue). But just because docs don't take your symptoms seriously, doesn't mean you are not suffering from something (they don't have to live with them and many don't have a clue what it's like to suffer medically and worry about what this means for one's future)...and you deserve answers. I found that expressing my desire to be back in the work force (and that I have depression due to being out so long) has helped move things along.

Have you gone to a neuro-opthamologist? Or had an OCT? Maybe that would help you convince someone to treat you for a CIS and give you relief that at least they are doing something for you. I know that I didn't type that well. I aologize. I'm coming off of steroids right now and I'm still very zoo-y.

[Jotunheim]

Don't appologize. I do appreciate the information. I'll try to sort out what an OCT is called in danish and then bring that up with the doctors as well. Back when I had my ON I was told that while it does link to ms and some other diseases (though primarily ms) some people also get an ON and then nothing else. That's what they thought had happened to be because my lumbar puncture and mri were clean. With what has happened to my leg now though, that just seems unlikely. It would be wonderful, but I just can't seem to find it in myself to believe it as a possibility.

[MSbrother]

I have heard the people go the Mayo Clinic for second opinions. Is that an option for you?

[Jotunheim]

I'm in Denmark, so most likely not, no. It's not that I don't trust doctors here.

[MarySunshine]

It's normal to grieve right now. Sometimes, it's harder to pull through when there are no answers or when the first diagnosis was wrong. I think that's what we're all trying to say. (Though, I can't speak for others).

[Jotunheim]

It feels odd to be grieving before even being told my whether I have ms or not, but yeah, I suppose that is kinda what is going on here.

[Pipes123]

OCT is Optical Coherence Tomography scan in English.