New- Being Tested

[JulieA]

Hi All,

I might have MS- not sure yet. Some thing is wrong though and I have been getting worse for about a year.

I just found out that my PCP didn't share with me that my Brain MRI last December was positive for lesions. I have been getting super tired and dizzy and having vision problems. I just told my NeuroSurgeon about this on Monday and with the Meylogram he scheduled yesterday he also had a CSF test done and a blood test- he is going to send me to a neurologist friend of his.

This week I started getting facial numbness on top of everything else. I have had two spine fusions in the last 3 years and due to a car accident this spring I am probably having a third. I am still working (I work from a home based office), but don't know how much longer I can manage. On top of the back pain and spine issues I have, I feel very sick.

I appreciate this site. I have been checking it out for a few days and decided to sign up. I will continue to keep reading.

Thanks,
Julie

[scaredihavems]

new/being tested

Julie:

I too am new here and in the middle of being tested. I don't know much about MS, but I can share with you some of the advice I have gotten on here.

I "sort of" had the same problem with my PCP. I had an MRI done 3 years ago (ordered by my PCP) because I was having horrible, frequent headaches, and I had two instances of temporary loss of vision in one eye. The MRI came back showing a "possible area of demeylinization" and it stated that "repeat MRI is highly recommended". My PCP did not share any of the findings with me. He said that the MRI was "fine" and referred me to a neurologist for management of my headaches and said "he/she may want to get another MRI if your headaches persist"

I only just saw the actual copy of my MRI report within the last week (yes almost 3 years later), and that was only because my headaches, blurry vision and other visual symptoms have become a daily issue so I made an appt with a new neurologist. This neurologist wanted an MRI and when I told him I had one 3 years ago, he wanted to see a copy of the report....hence, how I saw what the report actually said.

From what I have learned on here, it seems that matters like this are way beyond a PCP's knowledge. If your MRI showed lesions, your PCP should never have told you it was "fine'. Even if he was uncomfortable with discussing the results because it was out of the "norm" of what he usually deals with, then he should have referred you to a more appropriate person (i.e. a neurologist).

It sounds like your current neurologist is on the right track and at least performing the necessary tests to find out what is wrong. If he is referring you to a friend of his, then it is possible that his friend may be an MS specialist.

I have an LP coming up at the end of the month. I know the "not knowing/waiting" can be very frustrating. Having to deal with all these symptoms all the time makes it even worse. I understand what you are going through because I'm in the same boat.

I know I sort of went in a round about way of really only answering one of your questions, but I hope this helps. Just use your PCP for "sick visits" and leave the more complex issues up to your neurologist.

[KoKo]

Hello Julie

Welcome to MS World!

I just found out that my PCP didn't share with me that my Brain MRI last December was positive for lesions. I have been getting super tired and dizzy and having vision problems. I just told my NeuroSurgeon about this on Monday and with the Meylogram he scheduled yesterday he also had a CSF test done and a blood test- he is going to send me to a neurologist friend of his.

Gosh, that's not right that your doctor neglected to tell you the results of your brain MRI. Thank goodness that your neuro surgeon scheduled more testing, and that you are getting a referral to a neurologist.

Sorry for all that you've been going through. Hopefully the neurologist will be able to figure out what's going on with you and will help you.

I appreciate this site. I have been checking it out for a few days and decided to sign up. I will continue to keep reading.

We're glad you joined. Please feel free to ask questions, and we'll be glad to help if we can. Also, let us know what you find out from your tests and neuro appointment (if you want to!)

Take care,
KoKo