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Hello everyone. I have lurked for a couple of days and have seen a lot of positive and helpful information amongst posts. I have not been diagnosed with anything yet, but am seeking guidance in understanding things and finding the proper doctor. I definitely do no not like the neurologist that I have seen. I am 41 years old and have been in good health all of my life.

I was diagnosed with optic neuritis on 4/30. On 4/28 I woke up with blurry vision in my left eye. I attributed it to allergies. It was worse the next day (if I closed my right eye, I couldn't see anything with my left eye) and I made an appointment to see my optometrist. After a full exam, he thought I had a torn retina and sent me to a retina specialist. That doctor examined me and said that my retina was not torn and sent me to an eye nerve specialist. After examining me, he diagnosed me with optic neuritis and referred me to a neurologist to confirm the diagnosis. He explained that my vision would come back in 4 to 6 weeks and said that the neurologist may or may not put me on steroids. He didn't mention that the reason that I was seeing a neurologist was to rule out MS. Google told me that. If you type "optic neuritis," MS instantly follows.

Unfortunately I did not have insurance, so I had to hold off on the neurology appointment. I applied for a state insurance program on 5/4. I had preliminary coverage, but it only included hospital visits and visits to a general doctor. I was told it would take approximately 30 days for me to get full coverage.

On 5/11, my vision had become a lot worse and knew that I really needed to get in to see a neurologist. I called the insurance company and talked to the kindest and most helpful representative, Char. I told her my situation and she said that she was going to personally escalate this and would get back to me within 3 days. She called me on 5/13 and said that I was fully approved.

On 5/12, I went to the ER due to a severe headache. They gave me a CT scan, blood tests, urine test, and an MRI. The neurologist that was on call said that there were some white spots on the MRI where I might be getting headaches. He told the ER doctor to release me and come to his office the next day at noon.

On 5/13, I went to the neurologist's office. I am not usually picky with doctors, but this guy is a spaz. He made a comment about my state insurance (sorry, I don't have any time for judgment) and was just odd. He examined my reflexes and said that they were fine. He told me "if this is the type of MS that you have, and optic neuritis is your only symptom, you are lucky." WHAT?!?! I have no idea what that even means. He ordered a bunch of blood tests (I think they took like 10 vials!) and 3 different MRIs.

On 5/20, I had not heard back from the doctor's office about my blood tests. I called the office and the receptionist went over the results with me. She said that there was not one thing that was out of range. I was "hoping" that my thyroid was low. People with low thyroid often mimic MS symptoms. I have had a lot of hair falling out recently and a hoarse voice, which are signs of a low thyroid. My blood work was essentially perfect.

On 5/30, I had my MRIs. When I was done, the technician said that the radiologist was done reading my results and asked if I wanted a copy. "Sure, I want a copy." I totally regret getting this information, I have no idea what any of it means.

The MRA w/o contrast was fine. It said "Unremarkable intracranial MRA of the brain."

The MRI cervical spine w & w/o contrast just noted things about my spine, I don't think any of it is MS related. Ex: Marginal disc osteophyte complex

This is what my MRI w/ contrast said:
Clinical history: Optic neuritis, abnormal MRI

Comparison: 5/12/2015 MRI of the brain

Multisequence sagittal FLAIR, T1 pre-infusion and postinfusion axial and coronal T1-weighted imaging was performed through the brain.

There is a partial empty sella turica identified. The ventricles are of normal size and shape. No extra-axial fluid collections are identified. No contrast-enhancing lesions are seen. There are a few puncate areas of increased signal seen on FLAIR imaging within the left frontal lobe periventricular region and left cerebellum.

Impression: No contrast-enhancing lesions. Punctate peeriventricular and left cerebellum and left periventricular region suggestive of plaque formation in this patient with the history of optic neuritis. Nonspecific vasculitis cannot be excluded.

~~~~~~~
Nonspecific vasculitis? What the heck is that? No lesions sounds great. But then I read that plaque and lesions are the same thing. I am so confused.
My next appointment with my neurologist is 8/12. The nurse said that they will call me if there is anything abnormal with the MRI results.

I have been sleeping like it is my job. I don't know if it is from headaches, anxiety, fatigue or avoidance. In the past month I have slept more than I have in a year! I am only slightly exagerating because I have slept 18 hours straight on more than one occasion.

I know that MS is not a death sentence. I know that I need to concentrate on things like eating healthier, exercising and improving my general health. The not knowing is driving me nuts!

I want to be a good advocate for my own health. I want to be proactive in this progress. I feel like I am so overwhelmed and anxiety-ridden that I have just shut down. I am somewhat close with my family and have a ton of friends. I think they donít know what to say, so they donít say anything at all. I donít want my anxiety to turn into a full blown pity party.

Oh, and I want my eyesight to come back. Tomorrow will be 5 weeks since my first symptom. I have (gratefully!) seen slight improvement in my left eye, but it nowhere near perfect.

I appreciate any advice or suggestions.





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