Hi all. New here. This is my story.
 

Hi everyone. My name is Noah. I am 27 from Wisconsin.

Here is my story..

December 10th was my first doctor's appointment since I went to ER for double vision back on September 19th, 2012. My double vision was weird, as it only affected one eye when I looked to the right. The doctor said it was a sixth cranial nerve palsy, and that the nerve on the right side of my head was not pulling my right eye all the way over to the right side. This was causing each of my eyes to focus in different places when glancing to the right. The double vision was hardly noticable looking at me. Honestly.. I hardly noticed it because I started to turn my head when I needed to look the side. The ER doctor recommend I be admitted to the hospital for further tests. During my stay I had an MRI, CT and LP. The CT and LP came back normal. The MRI showed "spots". I was admitted to the hospital for four days. The last 3 days of my stay I had an IV dose of prednisone which took care of the double vision. The docs explained to me that they thought there was a very good chance that I have MS, but were also considering Lyme and Sarcoid. I was then discharged from the hospital.

Since my hospital visit I really have not had any problems. I have had muscle twitches all over (leg, arms, stomach, butt), and just recently symptoms that appear to be linked to cubital tunnel syndrome (stiff pinky in the mornings with slight "trigger finger" in right hand). Vision seems normal with regards to fine print that I look at from far away being a little blurry. I have attributed most of these things to stress and anxiety, because the possibility of any thing being seriously wrong has gotten me really scared and upset.

Fast forward to December 10, I met with my doctor at the hospital. He seems really unconcerned with everything, saying that hes not convinced that there is really anything wrong with me. He said the spots in my brain could be from bumping my head , playing hockey, bike racing or playing paintball as a kid. He believes starting a medication now would put me in a bad place down the road, as they may neutralize some of the newer and safer medications that are in the pipeline. We took a look at my MRI for the first time, and went through the report. The report listed 5-7 lesions. We went through and looked at each one and the only spot that was even remotely identifiable was a small spot in my corpus collosum, the other "spots" were either hardly visible or not visible to each of us...

I guess what I am asking is what should I do? I feel like I am railroaded in to seeing this doctor as I am prior military and depend solely on the VA for all my healthcare. He basically ended the appointment that any kind of testing would do more harm than good at this point becasue there seems to be nothing wrong with me. He stressed to me that I should live a normal life and relax about this stuff. He wants to see me in 4 months to talk, and then in about 10 months for a follow up MRI. The one thing he suggested was to take 2000 units of Vitamin D3 each day and skip the Omegas.

Does anyone have any suggestions or anything? What should I be doing? I look forward to talking with everyone.

Thanks,
Noah

Hi Noah, and welcome to the community!

Perhaps I missed it in your post, but was the doctor you saw a specialist? A neurologist? If at all possible, I would get a second opinion from an MS neurologist. There might STILL not be enough "evidence" for a definite diagnosis, but I'd want a specialist to say that.

There's something new coming out for information all the time, but I never heard of meds potentially neutralizing future meds. I'll have to do a little research on that, for my own satisfaction.

It IS quite common for an MS diagnosis to take a while since certain criteria have to be met for an official diagnosis. It took me a year and a half, and others have waited much longer. It's frustrating, but not unusual.

Vitamin D is recommended for those who do have MS from the literature I've seen, and I think there have been studies suggesting (I repeat, suggesting) that people low in Vitamin D might be more susceptible to MS. But I'm not up on the latest about that.

Noah,

To make a diagnosis of MS, lesions (those brain spots) need to be dispersed "in time and space." This means that you need to have symptoms in at least 2 areas of your body at 2 different times.

I'd keep the f/u appointment in 4 months w the same neuro ( if he was a neuro) that saw you this time.

There are MS specialists with in the VA system. However, your symptoms could represent many, many conditions. Unfortunately, the "wait and see" mode is necessary.

Best to you,
ANN

Welcome to your NeuroTalk MS forum. :)

So sorry as to what brings you here, but you have come to a good place for support and help along your diagnosis journey.

Blessings and Ann are right. It can take awhile before a Neuro will DX MS. Sometimes he/she will give you a maybe, but only after many tests of elimination for other Diseases.

I hope you get the answers and help to fight your disease/MS?:hug:

Hi Noah,
You are not railroaded into depending on VA for your healthcare! Unfortunately you might have to pay for a second opinion "on the outside" but imvho it would be well worth it.

Personally I believe the sooner we identify MS and start treating it the better and I do not understand your Dr.'s claim that starting a medication now might inhibit your body's future response to a better medication if something better becomes available. :confused:

In any event like the others said it often takes time to get a firm diagnosis but I would want to do whatever I could to advocate for answers for myself. Best of luck to you and I pray it isn't MS for you. Jules

Thank you for the responses.. I am extremely thankful.

I have pondered seeking a second opinion but unfortunately I do have insurance and I am currently unemployed. I was in school but since I had to drop out last semester because of the diplopia they are trying to stick me with a $6000 bill and will not let me take any more classes until I pay that back...

Really not sure what to do, this is why I feel like I am being railroaded to the VA doctor who I am not sure is a MS specialist. His profile online says hes a spine doctor.

hi noah and welcome to NT,
i would think that within the VA system you could seek out a 2nd opinion. even a good neurologist could give you that.

i also would get copies of the test results and the mri in case other drs you see will want to review it all. i'm a big proponent of starting your own medical file. down the road you will be glad you have it.

it does take some time to dx (diagnose) MS. it's also a process of elimination, eliminating other diseases. that mean labwork and serial mri's (mri checks down the road).

follow thru with this dr. at least he's willing to see you and do another mri.
in the meantime keep a sx (symptom) journal with the date and the sx you have. you might also consider seeing a neuro opthamologist if you have any more eye problems. opthamologist's have been able to dx MS IF they see certain eye changes.

hope to hear how you are.