went to neurologist...... got my diagnosis

[BusynMember]

Jena, sorry I'm late. As usual, I havent checked the WC for a few days.

Your attitude is fantastic. I worked with a woman who had MS. She had trouble walking on certain days and used a cane, but otherwise you would never have known. She explained that MS can go into remission for looooooooooong periods of time. Here's hoping yours does! by the way, there are support groups all over for people with MS. I went once because the doctor thought I may have it. The meeting was fun, upbeat, and people shared ideas and the good/bad doctors and the helpful treatments. It was not depressing at all. (((Hugs)))

 

[LittleDudesMom]

Jena,

MWM mentioned something great - a local support group would be of great benefit to you! They may even know about some drug companies who assist folks who can't pay for medications, know some of the cutting edge information on treatment, etc. When my sister was first diagnosis'd ten years ago, one of the first things her doctor did was give her the names of a coupe of his patients who had been living with MS for a little while. Apparently those folks had given permission to speak to newly diagnosis'd patients of the doctor. It was a great help to my sis and hooked her up with a support system. Also, my sister belongs to the MS society (not sure if that's the right name, but something like that), and she gets monthly newsletters with tons of great information.

Just for informational purposes - there is a much higher rate of vitamin B12 deficiency in folks with MS and that deficiency can exacerbate symptoms (make you feel worse).

Glad you finally got some answers and can now begin to treat your symptoms.

Sharon

 

[Jena]

thanks guys........ susie i hope you don't have it. ms is one of those difficult child illnesses lol i'd like to call it. difficult, defiant, doesn't make sense etc.

husband was ok, he's pretty strong. he came home last night and we sat and talked for a really long time about it, the medications, the cost. he said listen dont' worry we'll figure it out. i have to be honest it's nice knowing i don't have to panic about finances. i'm sure others out there have to. had this happened to me years ago when i was a single parent wow i would of been sunk.

he said babe we cant' go further down at this point: since we got married we've had......

difficult child get very sick, tried one hospital you had to leave live in new jersey a hotel,

you came home easy child was acting up, you have her your all.

inbetween my mother momentarily disowned me (shes' umm my mom and nuts lol)

than my dad passed away and my stepmom didn't tell me tons of pics showed up at my door.

my older stepdaugher kicked up something severe we had to handle that'

we had cps at our door

we had cops holding our dog due to easy child letting him free

second hospital for difficult child in portland as u know and i had to live there

easy child in trouble at home getting calls etc.

easy child arrested. court for easy child

his ex wife

easy child moving out........

now this.......... point is we have had our share of traumatic things, things we couldn't prevent and keep mutteling through.... it's been a bumpy rough year.

i said to him baby we got nowhere to go but up from here. we made it this far. if we can survive all of that and still want to be inthe same room with eachother we can survive and adapt to this. he just laughed!!

 

[rlsnights]

Hi Jena -

I'm sorry to hear your news. It must be scary even though it's a relief to finally have a diagnosis.

My brother in law has MS. He is enrolled in a clinical trial and has been on medications a long time. At least 10 years. His MS is completely in remission. He works full time on a road crew in the Sierra mountains - heavy work. Plus he hunts (bow and firearms) and fishes - as far as I can tell (and he will admit to) he is not modifying his lifestyle at all because of MS. He does say the day he does his medications (I don't know which one he's on but it's a weekly injection) he feels a little tired. That's it.

So I hope that you get into full remission and your symptoms go away completely.

Given your lack of health insurance - did the neurologist talk to you about enrolling in a clinical trial? We've done several clinical trials, some interventional where you get a particular medication, others observational that just track info. Clinical trials usually provide all condition-related medical care for free. So if it's something you'd consider talk to your doctor about it.

Here's a link to a list of open interventional clinical trials in New York.

If you want more info on being in a clinical trial just ask.

http://www.clinicaltrials.gov/ct2/r...tate2=&cntry2=&state3=&cntry3=&locn=&gndr=&ag

 

[Jena]

Thank you that is so thougthful of you. I must of missed this response.... i was on much today.

doctor and i didn't discuss the medication options yet, next appointment we will. husband and i havent made a firm decision how we will handle it. we're in an odd position. we make too much (due to the business) to get state run health insurance........ yet we dont' make enough to actually pay for private health insurance each month.

yet husband said to me well if we have to pay we'll pay. Honestly I can think of where to get 1K from each mos to put towards paying for private health insurance........ lol his ex wife's alimony that is still being paid and shouldnt' be. Yet that is another issue.

I'm glad to hear your brother in law is doing well and in full remission that's great! me, last hit left me with some permanent stuff. i usually clear up totally yet as of late I have not.

I'm not sure how i feel about it yet to be honest. husband and I were thinking it was ms for quite sometime yet we were hoping it was lyme disease. Which is also quite bad, yet there is a protocol of medications for it. its' all just settling in now for me, mentally. I'm the same me, i was before he said those words...... sounds funny yet i am. When you hear the official words being said it seems to change things...

anyway odd. thanks again for the links.