Yes, in Limbo

[mom 2 4 cats]

Hello everyone! I'm a preacher's wife from Southwest Missouri. Guess what? We have 4 cats!

April 29th I was at church, sitting in the kitchen and all of a sudden the vision in my right eye went blurry around the edges. At first I thought maybe a stroke since it was a sudden change in vision. Being an old nurse I quickly gave myself a neuro check and decided if it was a stroke it was mild.

Next day was a Monday so I went to optometrist. He told me it was an Ocular Migraine (!!) and it would be gone in a couple days. I had my doubts.

By Friday it had not improved and I now had just a black spot in the entire lower left corner of the right eye so I went to ER.

I couldn't have an MRI because I have a pacemaker so a CT scan was done. I was started on Plavix. When I saw neuro he said stroke and I had a CT angio (brain) and an echocardiogram. Both were negative. Now Neuro is sending me to neuro-opth. He says he doesn't want to do a LP because there is a risk on infection to my pacemaker.

LIMBO.... GAAHHHH!!!!

[Redwings]

Hi mom 2 4 cats:
Welcome! Since you had what sounds like a stroke (to a part of your eye if not to your brain), and since you were diagnosed with a stroke, and since you're being treated as if you had a stroke, what prompted you to come to an MS forum as someone in limbo for MS?

[mom 2 4 cats]

All imaging was negative for stroke. Cardiologist insists I did not have a stroke.

Vision has not improved and now Neurologist says no stroke and I have optic neuritis and it should have cleared by now. He tested for Myasthenia Gravis, it was negative.

I have spent 11 years sick with something that has made me extremely fatigued. When I was no longer able to sit upright for 2 hours I had to quit work. Sick Sinus Syndrome - Sino-Atrial nerve; not the ones in my face - was diagnosed.

Vertigo, fainting, extreme fatigue. Last time I fainted I fell down our staircase and broke both ankles plus 3 bones in my left foot.

Now comes the optic neuritis, and my neurologist saying he has ruled out everything except MS but he wants me to see the Neuro Opthamologist first.

If I'm not in Limbo, maybe someone can tell me otherwise?

[Turtlebay]

Welcome and so sorry that you are having these issues. Just my opinion but it sounds like limbo to me. I hope your doctors figure it out soon.

[mom 2 4 cats]

Update

Previous neuro refused to do a LP, says there is too much of a risk of an infection going to my heart because of my pacemaker.

Found new neurologist I like much better than original neuro. Bonus: He's much closer to my home! He orders Evoked Potential and finds disrupted neural pathway in right optic nerve.

Update: November 2013, visit with electrophysiologist = the insulation has been breached on one of my cardiac pacemaker leads. That lead is turned off and the decision is made to remove the pacemaker and leads. Local Dr. sends me to Kansas University Hospital Because the leads are 13 years old. July 15, 2014 they are removed.

Finally had brain MRI and a large mass of white matter was found in the right side of my brain and I was given a 3 day course of IV SoluMedrol. It didn't cure the blindness, at this point I wasn't looking for it to do that. But it certainly helped all the aches and pains I had going on. I had been in pain with my back and legs for 15 years and assumed fibromyalgia. What a miracle drug!

Last Wednesday I had an MRI of my brainstem that was clear of any white matter and I believe the next step will be a Lumbar Puncture. Dx ATM is Probable MS. Maybe I'm getting closer to the exit ramp of Limbo Land.