So I had my brain MRI and the doc called me ASAP today so he said there are some nonspecific white spots on your brain so I cant so for sure MS. If it is it is it's in it's early stages. So he wants to treat my symptoms and talk to me about where we go from here.He said he is going to give me steroids- my right hand is now tingly on my fingertips. So we will see. I will post my results from my MRI- I still think its MS but I will wait to see what he says tomorrow.


IMPRESSION: There are couple of small nonspecific right frontal T2 FLAIR white matter hyperintensities. This is not typical or pathognomonic of MS but may be consistent with the possibility. Further clinical evaluation is suggested.

Thanks again I will keep posted tomorrow!! Just keep chugging along right?!?!

Thanks TJ.

I hope you get answers tomorrow but treating symptoms until the diagnosis reveals itself is reasonable.

Best to you,
ANN

Treating the symptoms is a good idea at this point. Has your dr. run any other testing for other things that may be causing this? You may have posted that and I missed it.

Lesions can be caused by many things beside MS including migraines (which can also cause neurological symptoms). I hope that they figure this out soon for you so that you have a name to go with your symptoms. Hang in there and let us know how you are doing!

TJ, thanks for letting us know. At least you Neuro is working on it and
not dismissing you, as if you're nuts.

Hi TJ, glad you are getting quick responses from your doc! One thing you might want to do if you have not already is to go read the McDonald Criteria for MS (http://en.wikipedia.org/wiki/McDonald_criteria).

When I had an episode of hearing loss and got an MRI, they found a couple of lesions. When I saw the neurologist, she told me that I didn't have enough lesions or the right kind of lesions for her to call it MS and ordered annual checkup visits with her and followup MRIs. After two years with no further symptoms or issues, I was pretty convinced that she had told me that what I had didn't look like MS. Then I got another MRI and there were more lesions. Suddenly she was telling me that now she could call it MS and started talking to me about starting on a disease modifying drug.

In hindsight and knowing what the McDonald Criteria are now, I can recognize that what she was doing was following that criteria, which required new lesions or new clinical symptoms separate from my original episode by at least 6 months. So when new lesions showed up 2 years later, it gave her what she needed to meet the criteria and justify the diagnosis. I am not saying your case is the same, but reading what the criteria are might help you better understand what the doctor is telling you so that you hopefully aren't taken by surprise the way I was.

Very good post TXBatman! I had lesions but was not dx until 3 years later. I didn't have clinical symptoms with the exception of what we now know as the hug and some tremors. The neuro didn't want to dx me at that time. She wanted to wait and see before making that dx. Once the other symptoms started happening, I still only received a benign MS dx. A few months later more symptoms and lesions showed up and I was officially dx. In the beginning, I did not fit the MacDonald criteria and even when I lost the ability to walk, I still didn't fit. Finally, between numbness, losing control of my bladder, having balance issues and walking issues again, etc. I fit the criteria and was dx.

Ditto Txbatman…
my neuro still wonders when looking at the MRIs…since they're not in typical MS places in the brain. But combined with the symptoms, he's sure of it.

Hope you get more info...

Let us know…we're a nosy bunch

So I'm back! So much to take in let me tell ya!!! So for starters he wants me to do iv steroids for 5 days ASAP to help with my cervical spine lesion- he thinks its a flair? The Iv steroids is scary to me as it was new and unfamiliar to me.

Onto the ms- well I only have 2 lesions on my brain and the one on my cervical spine- so he said he would need 7 lesions on my brain to dx with ms- BUT a big but he is concerned about the one my spine esp its the one giving me the symptons and the location. So even though I do not meet the criteria he would like to treat me as if I had ms and spinal puncture and keep watching to see if I get new lesions. He said he would rather treat and it not be ms but wouldn't feel comfortable not treating a cervical lesion and it be more.

So all in all I say I am pretty happy. Me being **** as I am I would like a definite yes you have this or no you don't- but I'm getting that this isn't going to happen soon.

Now onto research meds- from the little reading I have done copaxone seems to the one people like the most because of the lack of s/e- my doc suggested pill form tecfidera if insurance approves it.

Thanks so much for the support I appricate it all from the bottom of my heart- I needed a place for my crazy head to vent! So thank you!

TJ - I sort of want to say "congratulations?" Mostly because you have answers, treatment and a so good doc! That's a lot.

Sorry about the possible/probable MS.

Three to five days of IV steroids are the usual treatment for a flair in MS.

It seems you are in good hands - except for the Tecfidera part. I wouldn't want that but everyone is different.

ANN

Sounds like you have a good and proactive doc. Get ready, because the steroids can make you feel like crap all on their own. But they should help with the other problems by the time you finish them. As for the meds, I don't know much about tecfidera, but I was on Copaxone for several years. I had a good experience with it and didn't want to change, but I had an MRI show more lesions showing up, so doc recommended changing to Rebif. I have been fine on Rebif other than hating the fever and chills I get if I forget to take an advil with it.

One thing to note however is that most insurance companies are changing the way they treat Rebif because it is very expensive, even relative to the other MS meds that are expensive by themselves. My insurance company (United) is not only charging a 20% copay this year (which is common for most of the biological meds for MS), starting January 1st, they are making Rebif a tier 3 biological, which for me means a 25% copay, AND they won't accept direct payment using the manufacturer's copay assistance program. So I will be paying approximately $1125 out of pocket each month next year and then submitting that to the copay assistance program for reimbursement. The moral of my long-winded whining is that before you choose a med to try, make sure you understand how your insurance company classifies it and what they will charge you for a copay. Also be aware that most of the manufacturers do have a copay assistance program to help if you can't afford it. I hate the idea of making healthcare decisions based on some arbitrary cost guidelines from an insurance company, but it is what it is. FWIW, United is not treating Copaxone, Avonex, or Betaseron the same way...just Rebif for some reason.