Eye Update and what’s next…

I went to see an Ophthalmologist last week. He had indicated that he did see some items relating to the nerve in the left eye.  Some irritation.  He didn’t get very specific.  He was also hesitant to call it optic neuritis due to the fact that I didn’t have other symptoms that typically go along with it.  Ultimately he wanted to wait to see what happens.  He also recommended that I see a Retina specialist as they have some laser tools that can do more specific imaging that he couldn’t do.  Although he said to do that in 6 weeks or so. 

The pain I was feeling appears to have subsided.  Last Saturday was the last day I recall feeling it.  So, that is good at least.  Still leaves a ? though. 

I also got a call from the MS Clinic at UT Southwestern this morning.  They are going to get me an appointment!  That was pretty quick also.  Only about 2 weeks or so.  It is scheduled for March 26th.  I’m really looking forward to that.  While I’m guessing I’ll still have unanswered questions, I have a more confidence in that center than my current doctors.  From what I’m told I’ll be in better hands regardless.

So, it looks like I have a month before any more real news…


Eye issues and UT Southwestern

Last Wednesday I started having some pain in my left eye.  It has happened in the past one and off, but never lasted more than a few hours.  By Friday it was a constant pain whenever I would move, or rub, my left eye.  Saturday was the same.  I couldn’t do much at that point because my neurologist is only open Mon-Fri.  The pain wasn’t really bad.  Felt more like soreness than anything else.

On Sunday, it felt like it did on Wednesday and Today it really hasn’t surfaced too much. 

I went to the neurologist today because he said to get back to him if something lasted over 24 hours. In all of 5 minutes, he heard what I had to say and then indicated I should just go see an eye doctor.  He mentioned that if it is only pain related it wouldn’t be neurological.  He was interested more in blurriness or lack of vision if it was optic neuritis.  That’s fine. Would have been nice of him to clarify that a week ago.

He had mentioned something about stroke and I reminded him that I had had an MRI in the ER back in December, but that’s all that was done.  He was looking for those reports, and I reminded him I had those reports and when he saw them in conjunction with the MRI he jumped to MS.  I know they made copies, but apparently he didn’t have them.

As I was checking out, he came up indicating to maybe get a CT Scan for something to check blood vessels.  At that point I mentioned that I had been asked why I hadn’t done an MRI with contrast.  He asked if I was sure they didn’t do it with Contrast and I said yes (mainly because I know they didn’t give me any contrast, but also because it was clearly written on the report).  He casually said we could get one.  Almost like an afterthought.

/sigh.  Needless to say I’m not overly happy with this doctor. 

On a different subject, I got the initial questionnaire for UT Southwestern Medical Clinic.  It was 21 pages that I had to fill out.  Took about an hour and was very inclusive.  Covered a whole lot of things that my current neurologist didn’t even touch.  They indicated they had everything from my and would review the items and get back to me.  We’ll see.  I’ve heard it can take a long time to get in and it may not even happen.  For now, I’m just going to wait for that.

The Results… or not…

Last Monday I went back to the doctor to get the results from the Spinal Tap and blood work.  It was a fairly quick consult.  He indicated that the Spinal Fluid looked clean and basically the result is inconclusive as they can’t say what it is.

At that point he started backing off of what he had told me back in December.  After reviewing his notes from the MRI, he indicated that it didn’t like look anything to worry about with that.  Also that my symptoms could be from a lot of different things and could have even just been a migraine without any pain.  Although I’m suspicious of that being that I had lingering symptoms for a month.  Needless to say it left a bad taste in my mouth.  He ended it saying that we would really need to wait for another attack to occur before he would recommend any kind of treatment.  Which, to be fair, if we aren’t sure that it is MS, I would rather not impact my immune system which could lead to other problems and MS not be the issue. So, essentially we don’t know.  It could be MS or it may not be.  We just need to wait. This does kinda jive with several things that I’ve read indicating that typically a diagnosis won’t be made until two recorded attacks have happened.

One comment he made was that if he can’t tell me what it is, that is pretty good news, as opposed to him giving me a firm diagnosis.  I guess, but now I’m back to not knowing what happened and if it will happen again.

A friend at work has a neurologist for a wife.  They had offered to answer questions I may want to bounce off of them.  I typically try to avoid, or at least limit, it unless it was something pretty serious.  My gut was telling me to go get a second opinion, but I was worried that I would go through that just to have them tell me the same thing.  So, I bounced that question off of them. Would it be worth getting a second opinion? 

The answer was yes.  She had recommended getting a second opinion at an academic institution with an MS specialist.

I posted on thisisms.com to see if anyone could recommend someone.  That came back with the UT Southwestern MS Clinic, which is in Dallas.  Another friend at work also suggested the same, and that her husband goes there.  Sounds like a winner to me!  Although a bit of a drive from my house – 32 miles.  But, it sounds like that would be a better diagnosis. 

From what I was told, I’ll probably be put through some more tests.  So, now it is the waiting game again.