Hello, new here
 

Hello to everyone. I'm new around here and new to MS. I've been labeled as possible MS by my neurologist. My story started a couple years ago but I didn't really pay much attention then, I would wonder from time to time why I felt so tired and weak but I'd always tell myself I'd go see the doc "next week" but then I'd usually be feeling a bit better. Last summer tho things changed enough that I finally scheduled the appt. Extreme fatigue, muscle weakness, dizziness/vertigo, tingling (mostly my face and right limbs), memory problems, very uncoordinated... My pcp first said it must be migraines, but ordered some bloodwork and a brain mri after a followup appt. Then referred me to the neuro after the mri showed atleast 5-6 white matter lesions. Neuro exam was pretty uneventful as I was feeling better by the time I saw them, was told I have brisk reflexes and babinski reflex. Then came more bloodwork and a c spine mri and lumbar puncture, all was normal, which is good but also frustrating. Now the neuro wants to follow up with another mri in 6 months and referred me back to pcp... Sorry about the vent, just no one around here seems to be able to relate.

Azlin, I think you will find plenty of people here who can relate. Imagine what life was like before MRI's - we were all crazy.

Your symptoms do match MS but there are many, many things that mimic MS. It makes sense for a provider to want to see you again as you must have deficits over time and space. So, they need to follow you.

Do call if there is a new symptom or a worsening of old symptoms before your next appointment.

Glad to have you aboard.
ANN

Welcome Azlin.:)... And we do relate..:grouphug:

Sounds like a simular story I had, only it dragged out over a 12 year span! Keep a symptom journal everyday. Things can come and go and you will forget all about them unless you write them down. A six month follow up MRI is a good thing. It can be very frustrating and a bit frightening, but just hang in there. :hug:

Hi Azlin and welcome to NT! Sorry you have to be here, but under the circumstances it's a great place to be with all the friendly, informed people more than happy to answer questions you might have. Hang in there....we're here if you need us.....:):hug:

hello and welcome

Thank you everyone, it's nice to know I have a place I can come and talk with others who understand. Most of my family believes it's all in my head and I was beginning to believe them before I saw the neurologist. She of course agreed it's all in my head, but for different reasons than my family believes :)

My husband is starting to come around and understand more of what's going on which has been a big help. We've got 3 little ones and sometimes I just can't keep up with them and the house. :(

I was seeing my neurologist every 3 weeks, so I was caught off guard when she suddenly wanted to follow up in 6 months. I guess I felt like she had given up on me. But, I understand that we may be in the waiting game to see if anything changes.

A symptom journal is a good idea, I'm going to start that today. I was sometimes having trouble remembering what had happened over the 3 week span... 6 months would be very difficult to recall when I go back for the follow-up.

Thank you again to everyone for the warm, understanding welcome :hug:

Hi! Welcome to NT. :welcome_sign:

Those of you with small children to raise have my utmost respect and awe. I remember how difficult it was to raise my two boys in seemingly good health. I can't imagine trying to do that now.

I'm glad to hear you've got a good Neuro in your corner. It's a long process for most of us to get a diagnosis. Hang in there and keep coming here. Lots of fantastic folks who really do understand. :hug:

Azlin, it sounds like you have a great family with an understanding Hubby Even though he can't possibly know what you are going thru, it is admirable that he is there for you.

This is your new home away from home. Please abuse it.:D

Welcome Azlin! As others have mentioned, you will find lots of information and support here.

I'm sorry you are going through this. It sounds as if your neuro wants to wait and see if things change and/or if you have a flare up of more symptoms (MacDonald Criteria - space and time). Hang around and I hope all goes well for you.:hug:

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...:hug::hug:

:) 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 :D

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.

:grouphug:

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. :hug:

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. :hug::hug::hug:

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

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!" :Tip-Hat:

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...