hi azlin and welcome to NT.
i'm glad you found us.
i see you've already gotten some great advice.

i would start to get copies of your test results, a copy of your mri disc and a copy of the report. as time goes on it will be important for you to have your own records. plus, reading the md reports may be very informative.

make sure you ask for the mri to be with and without contrast. contrast can give the dr a better picture of things.

wow, 3 little kids. that's a handful. how old are they?
hope to hear more about you.
take care.

Welcome to NT, Azlin...sorry it's for this reason, tho...

There's a lot of info, support and laughs here (tears occasionally too). I love coming here...feel less alone, and always a huge amount of info when I have a question.

It took me 3 years after I first saw a neuro before I got a diagnosis of MS. I was first told it was migraines (which I never had). My lesions were in the "wrong" place...That neuro dropped my insurance, so I went to a specialist at Univ. of Chicago. She told me it was my fibromyalgia. Uh huh.

Then I went to a neuro nearby. He specialized in strokes, but I heard he was a good doc. He put me on a wait and see like you. A year later I had a new huge symptom, and new lesions on MRI put me in the "Yes you have MS" column. I see a different neuro now. He has told me my lesions are in different areas than he usually sees, but the symptoms totally are MS.

Definitely keep a symptom journal with dates of onset as well as when they go away. Also note if you are reacting to heat, stress, etc, as they can make symptoms worse.
I also keep a list of questions I want to ask the neuro, because I always forget them when I see him. I bring someone with me to all doc visits...helps me because I can't remember what he has said.

Get rest, eat good food, drink lots of water, and try to get some activity, even if it's a walk...and never give up...

Glad you found us...

This is definitely a great place to hang out. I've already found a wealth of information. I know you can all relate to how it feels to not know. It's been very difficult, I am very grateful that my husband is starting to understand more.

I have an 8 year old daughter and 4 and 5 year old sons. They keep me as busy as I can keep up with and they are my life

I've been getting copies of the reports from the MRI's and some of the bloodwork. I also got a copy of the lumbar puncture from Mayo Clinic. Even a copy of the report from the EEG my neuro seemed to think I needed (thank goodness for good insurance) but I don't have the disc's. I'll have to find out how to get those. I also don't have copies of her reports from office visits, although she usually does read them back to me at my next appt so I can remember what we talked about (my memory is really terrible these days).

My brain MRI was done with/without contrast, but the c spine MRI was only without contrast. On my follow up MRI next July I think I'm going to request she order it for cervical and thoracic spine along with the brain and make sure it's done both with and without.



Az

Welcome Azlin,

This is the best place for support and and information. Good luck and I hope it turns out to be something benign or easily treated.

Hi Azlin. Welcome to NT. I'm so sorry you have to be here. I got diagnosed with MS without having any O-bands (normal spinal tap). I also went to the Mayo Clinic. They have a watch and wait approach which is different from some other neurologists' suggestions (such as Elliot Frohman, MD) who advocate treating soon if the signs seem to point to MS. It sounds like you have a lot of symptoms due to heat (I.e. the summer). I hope your Mayo experience was good. I didn't wind up with a very nice doctor when I was there. All the above advice is excellent! Good luck.

Hi and welcome - you have found your place amongst friends who have 'been there, done that'

Fel free to vent, ask questions, find solace or a kick in the pants (whatever is needed); all toppped off with some fairrly offbeat humor.

as for the "all in your head" comments: just shoot back "You're right and I have the spots on my MRIs to back it up!"

Natalie,
My neuro did his residency at Mayo. He told me that he learned to treat disease there. Now, he feels blessed to be in a practice that treats patients...he believes in working to help the patient live as healthy a life as is possible, even with this stupid disease...